The Best Things in Life Aren't Things!!!

Miss P turns 3!

2011-09-07T23:30:00.000-07:00

3 years ago today my life changed in more ways imaginable – ways I never considered possible. Who would have thought that such changes, such inspiration and transformation could come bundled in a tiny 7 lb package with beautiful blue eyes, a small button nose, and such silky flawless skin? It wasn’t a news worthy event that took place, there wasn’t a huge announcement beyond the quiet walls around us, it wouldn’t be talked about by a nation, or a city or even beyond the people in my own life. But this night, will forever be a night burned in my memory, written on the blank and sacred pages of my soul as a night I changed forever. This revolution happened in a quiet hospital room as the silent anticipation to hold my new baby girl was quickly transformed into a fear I had never known before. Our little girl came with something extra –an extra chromosome - Down Syndrome. I felt so inadequate, so alone, so afraid of everything that lay ahead. At that time I felt as though I was suddenly thrust into a life I wasn’t prepared for, wasn’t capable of, a life I simply didn’t want. I would soon come to realize that often times, we may know what we WANT or don’t WANT, but rarely do we truly know what we NEED.

I never would have asked to be a mom educated in the medical field because of the needs of her child; a mom that knows first-hand what a PICC line is or how to work an oximeter. I never would have pictured life as a mom spending countless hours rocking my baby to sleep, keeping beat to the deafening sounds of monitors and machines in a dark and dismal hospital room- praying silently that my fragile little girl be given the strength to fight whatever is ailing her imperfect body, I never would have asked to become versed in the ‘special needs’ world – or know what it feels like to worry so much about every little and big milestone – will she ever eat on her own, will she ever make it out of this hospital, will she ever walk, will she talk, will she be accepted by her peers even though she is different? I would never have asked to fight all the battles that come with a special needs child – a battle for all the little things that I took for granted before I knew this world. I would never have asked to find out how truly strong I am fore the fear of the fight and test was always too overwhelming. I never would have asked for these things that now are a normal part of my everyday life. We are not the sum of these things – we are not defined by our struggles, our problems, our fears, our dark and dreary moments, or even our mistakes. But it is these things that at the end of each day can either separate you, or hold you together. If I was never handed these complex and often difficult things, I wouldn’t know hope, like I do now; that greets me each morning with a smile sweetly reminding me to pick myself up one more time and carry on …I wouldn’t know faith, as it stares me in the face every day, smiles warmly and wraps it’s gentle arms around me every time I feel like giving up. I wouldn’t know gratitude as I have continually thank God for this little girl, these challenges, and these pure joys. I wouldn’t know love, in its purest form, an amazing little girl with big blue eyes, honey colored hair, unconditional love and the spirit of a warrior. I wouldn’t know the sweetest and most valued things in this world, because I wouldn’t know anything beyond myself.

It is true that we never know how strong we really are, until being strong is the only choice we have. This day, the day I met my little girl, it was the only choice to make – to fight the battles, to pick myself up time and time again, even when all hope seemed loss and every road around me seemed dark and long, when my legs were heavy and my spirit broken…when determination was cloaked in fear and exhaustion had set in. The only thing I could do was to dive deep within myself to the parts I never knew existed – simply because I never trusted myself enough to look for them. It was a choice, inspired by the perfect eyes of a little angel to find the courage to walk on, to look for that small light of hope and hold on tight; to celebrate the small, simple, blissful moments I took for granted once before; to watch her in complete awe and adoration every day and realize she doesn’t have a thing to learn on this earth – it is the rest of us that have so much to learn from her.

This day three years ago, and every day since, I have been inspired, moved to be a better version of myself. There are times, many times, that I fall short; times I forget the things she has taught me. However, with every sweet smile, or simple little glance…with every struggle I watch her overcome and every determination I see radiate from her sweet little stature, I am graciously reminded who I should be, what I need to strive for and why. I am a better person because of her, I am stronger because of her, I am blessed because of her – my little princess, my perfect angel, my little girl – Preslie…who today we celebrate…everything about her, we celebrate! Happy 3^rd Birthday Princess P!

Here's a tribute to you:

bitter - sweet

2011-08-15T23:29:00.000-07:00

It was nearly 3 years ago I first looked into the eyes of a sweet little angel that would change my heart, my soul and my life forever. I remember so many nights holding that sweet bundle of joy in my arms and my head swirling with questions, worries, fears, anxiety, gratitude and everything in between. How long would we be blessed with this sweet perfection? Would all the medical issues get the best of our little angel? When would she walk? How would she look as a toddler and little girl? What would her personality be like when she was older? So many curiosities, so many unknowns. And of course so many months of milestones steadily and slowly reached, so many doctors appointments, tests, therapies and surgeries...sleepless nights, long days...nights stuck in the hospital, listening to monitors and machines and nights slowly rocking my baby girl back to sleep in the quiet of our home. There were moments of utter and overwhelming fear and so many moments of the most profound and incredible joy one could ever feel. Ive witnessed every incredible milestone and watched every struggle. I've held her hand through every blood draw and comforted her through every test and doctors appointment. Ive watched every illness take over her precious, delicate body and I've watched the soul of a warrior shine through and fight every infection. I have shared a million laughs and held her through a million tears. I've been there through every accomplishment, every set-back, every struggle, every miracle - I have battled through the dark days along side my angle and triumphed along with her through every victory.
I have been moved, changed, inspired and brought to my knees from one sweet little girl. I have cried a million tears and felt the most sincere joy because of one little girl. I try a little harder and fight a little longer, take one step further, all because of one little girl. My life will never be the same - my heart will never be the same and my soul will forever be changed because of one little girl.
Today I carried that one sweet little girl onto a big yellow school bus, buckled her in her car seat, handed over her back pack and waved 'good bye' for the first time. I watched my baby girl drive away into so many new unknowns trying to convince myself that not only is she ready, but her mama is as well. Almost 3 years to get to this moment, yet it was a moment too soon. Tears of fear, joy, concern and gratitude streamed down my face as I let her go, reluctantly, and proudly. I missed her every moment she was gone, but felt such gratitude for the little girl I was sending out to bless the world. I knew she would, in all her feisty, spunky, sweet glory, make someone smile today. I knew that although she might go through moments of apprehension and fear, that she would, as she always does, come through triumphant and as awe inspiring as ever.
My baby girl is growing up, my baby girl has come so far and fought so hard for where she is today. My baby girl is ready to spread her perfect little wings and fly....touching all in her path, inspiring those that get to know her and touching the hearts of those her grow to love her. It was a bitter-sweet day...so sweet that my princess is still here, still ours, still thriving, growing and learning. So sweet to watch that perfect angel go out into the world - even if it is only for a few hours a day and change lives. and yet bitter, bitter to let go, bitter knowing I am not there to hold her hand through every struggle or there to cheer her on through every milestone. Bitter to turn her over into someone else's hands and trust them completely with such beautiful perfection. Sometimes letting go takes time and take a toll on our heart.

I anxiously awaited her return and ran to the bus with open arms when I heard it pull up 4 hours later. As soon as I had her in my arms again and watched those radiant smiles flow, I knew she did just fine. I opened her backpack to find a notebook with her name on it and notes taken from the first day of school. She had them all laughing and loved exploring the room. She sat at a table and played with a friend and loved clapping and dancing at music time. She was all smiles and laughs...she was my Preslie. My heart was full, calm and at peace. I will once again, hand her over, although still a bit reluctant tomorrow morning and probably several mornings to follow, not too sure if I am totally ready to let my baby go, but so thankful for all the joy and happiness that she not only brings to my life and the lives around me, but to the world around her. Having her with me almost always for the last 3 years has been a gift I will forever be thankful for...she is a part of me and always will be. As the last chapter slowly closes, a new, unknown is opening...a bit overwhelming, a bit scary, but it's beautiful, just as she is...and we will write in it's pages daily, hopefully with more inspiring stories of triumphs and joys, laughter and milestones...one day at a time, one page at at time...as she impacts one life at a time.

A New Day!

2011-04-06T21:45:00.000-07:00

Diagnosis- Chronic Obstructive Pulmonary Disease, or as her Pulmonologist put it simply, 'She has Chronic Lung Disease.' We always knew that her lungs weren't the best, giving her problems the second she was born, but we were always told it was simply: asthma. The doctor brought in xrays of her lungs to show us the hyper-inflation and the damage that has been for the first part of her life: possible under developed lungs, breathing issues at birth, RSV and Pnemonia at 6 months old, aspiration for several months before we knew, refluxing into the lungs, etc....the list goes on. Fragile lungs stressed and strained. They didn't want to do any more testing in Texas since all of her doctors are back here and 2 of the tests require her to be healthy, so their primary concern was to just get her home safely, home to Phoenix. They also wanted to do an EKG to see if her heart has been strained to make of for the lack of lungs, but the EKG was cancelled because of how feisty and terrified she was. The hospital social worker worked very hard for us Wednesday morning to get enough oxygen from a company that would allow us to cross through 3 states. My dear mother had driven down from Utah the moment she heard we were being transferred - 16 hours in the car to help her daughter, and her grand daughter. Didn't even hear from a couple family members, yet my mother, always going to the ends of the earth for her children, never ceases to amaze me! I guess it's in those dark moments, the moments that you may not be yourself, you may have nothing left to give, the moments you arent' sure where to turn or which way to go...it's those moments the true friends, the angels of the earth step up and don't let you fall. By Wednesday morning my mother, Jaden, Preslie and I were ready to go back to Hobbs with Kurt for the night and get ready for the 10 hour drive the next day. Preslie, although happy to be out of the hospital, was still not herself, still not 'ok'. She was pale, she was tired, she was still very sick and still fighting fevers, coughing and fighting to breathe. But we got her through the night and although we didn't want to leave the support and love of Kurt, we hit the road home. It was a long drive, stopping several times to 'fix' things, help kids, bathroom, food breaks, but finally made our way home late that night. Bitter-sweet in so many ways...

I entered our home with a very heavy heart. I didn't know much about this new diagnosis, but I knew on a whole new level how very fragile my princess was. And once again cords and tubes...such a familiarity I was hoping to forget all together. But in the end, we were home, familiar sights sounds, a real bed, normal food, no nurses coming in every 2 hours, and reunited with my Ky bug. I couldn't have done that drive alone - so mother, from the bottom of my heart, I thank you!

Finally home, she took kys hat, life becoming back to normal! :)

Since being home, Ive had a few 'releases'...letting the fear, the exhaustiong, the uncertainty out, hoping to finally exhale and get it all out. We met with Pediatrician, pulmonology and cardiology shortly after arriving home. They all agree with the new diagnosis, they all agree she is very fragile. Cardiology was happy to report her heart is fine, so good to hear that, so good to be at peace in that sense. I left the Pulmonologist with an entirely different feeling. Preslie doesn't have a broken heart that can be repaired or an illness that with proper medication can keep it under control.....no, the lungs are different...Preslie has a chronic disease and we don't know what to expect, we don't know how many more hospital visits await us in the future, how many years we'll have oxygen tanks, machines and monitors floating through our house, how many nights will I have to see her struggle to breathe or cry in fear each time a doctor or nurse enters the room. We can give her steriod treatments daily in hopes to give some strength to her lungs, but reality is, we don't know what to expect tomorrow, next week....the next cold, the next bout of crop, or what will ultimately get the best of our baby girl. The Pulmonologist wants to do a bronchiol scope as well as redo her sleep apena test, but even so, if the results aren't good, there aren't many options - c-pap at best and we all know how much a 2 1/2 year old will love sleeping with a mask on her face...but it's better to know, better to understand all we are dealing with then place one foot in front of the other and move forward! The doctor left me with this: 'She is fragile, she doesn't have the reserves that other children do, so when she gets sick, it hits her ten times harder and will take ten times as long for her to get better... and in the end, there isn't much we can do.' I left with a very heavy, achy, heart...trying to keep the fear and worry under control and look for every reason to smile. Could it be worse - yes, do I still have my baby girl - yes, are we home and out of the hospital for now - yes...but the fear is still there; I cant deny that, the worry still creeps in from time to time, the longing to just make her all better has now become a permenent part of my soul, but I am trying to manage all of those emotions, just breathe and enjoy every second of my princess....She is a gorgeous angel that has enriched my life beyond measure. Her eyes radiant and pure, her smile infectious and healing and her soul perfect as can be and for now, for now she is still ours, ours to love, ours to learn from, ours to laugh with, love and enjoy with each breath we all take together!

Getting settled back into her routine at home...always loves the balls in therapy, but today J had to get in with her!

Just being beautiful waiting for her Pulmonologist!

Our new life unfolds....

2011-03-30T06:43:00.000-07:00

As we were preparing ourselves for the ambulance transfer on Monday, we all sat glued to her sat monitor as NICU parents do...watching the oxygen go up, go down, listening to the beeping and usually knowing how to work the monitor better then some of the nurses and techs! Not only were our eyes glued on the O2 numbers, but the heart rate as well. Preslie's resting heart rate was steadily getting faster...resting heart rate about 150 and hitting 203 at one point. When we first arrived at the hospital, we knew her lungs were going to be a concern - they always have been, much more so then her heart. Preslie was born with an ASD - a small hole between the two upper chambers of her heart, but the hole never really posed any problems for our angel and last May, at her last ultrasound with Cardiology, they had believed it was all but closed. Monday morning the pediatrician came into our room to look over Preslie and not only were her continually decreasing sats a worry, but the doctor said she could hear a murmur and the right atrium of her heart looked enlarged on the xray taken in the ER 2 nights before. Odd, I thought, the murmur shouldn't be there if the hole is closed....and even more disturbing, part of her heart is looking enlarged - NO ONE has ever used enlarged and Preslie's heart in the same sentence. The doctor shrugged her shoulders once again, adding to my anxiety over my daughter and my desire to get to the other hospital - NOW.

Resting in the long, boring ambulance ride to Texas

Two hours later after a very long, boring ride in the ambulance a real hospital awaited us - UNM- in Lubbock, Texas...the feeling was different in this place. Sure, all together, hospitals are not usually happy places, but they CAN be places of hope and progression...places of healing and peace....none of which we had felt in several days.

We got settled into our room late that night, O2 monitor in place, our suitcases piled in the corner, nurses and techs coming in to do all the traditional meet and greet and finally around 10 the pediatric team came to meet us and spend some time with our Miss Preslie. After reviewing her medical history, he attempted to do an exam, but Preslie was done with doctors, hospitals, monitors and the now feared 'white coat and stethescope' that she anything but cooperative. You could tell by his questions and facial expressions that he wondered all together why we were being admitted instead of just being sent home: 'We'll keep you tonight and hopefully if she's turned a corner, then it will be just for observation and you can probably go home in the morning.' I nodded in agreement, simply so kurt could start his 2 hour drive back to Hobbs and Jaden and I could try to get settled and maybe even catch a dream or two. But I knew deep down that a doctor he may be, no rarely do they know better then mothers! I knew something else was going on with my baby girl and I warned them the get the cannula's and oxygen ready! Similarly, then also nodded in agreement!

Sure enough, shortly after my sweet angel dozed off, her sat monitor was going crazy and she was straight down to 81. Thankfully the nurses didn't let it go any lower and they were surrounding her bed ready to place cannula's in a very tired, very confused, very scared little girl.

It has been 8 months since Preslie has had cannula's in her nose, so at first attempt she would rip them right out and start her relentless fight. I stepped back and let several nurses get the job done because I knew no matter how much she hated those tubes in her nose, it was those tubes that were going to save her, that were going to keep this from getting much worse. They finally had to tape her hands to little paddles so she couldn't grab at her face or the tubes, but since my little girl is 'delayed', she didn't understand that any better, and that sent her over the edge. For the next 2 hours she fought, me, the nurses and anyone that even tried to get close. She threw her head back, hit at her face and the sides of the crib....where was my little angel, what had all these tubes, hospitals and illnesses done to my sweet, precious baby. I held her, I rocked her, I left her alone, I put her in bed with me, I climbed in bed with her...but nothing would calm this terrified little girl. It was the hardest night of my life, to watch and truly understand how it must feel to not understand. She was so sick...her cries weak, her tears non-existent from lack of fluids...her fight strong, her determination unlike I have ever seen, and her trust in anyone and everyone gone! I had to stop her from hurting herself, from hurting me...I finally wrapped her blanket tight around her arms and held her tightly in mine, singing the song I have sung to her since birth - weeping in the dark, I held my baby girl, singing in her ear until we both fell asleep....

Miss P, confused and exhausted over these horrible paddles on her hands!

The day began just a few short hours later and not only did I awake exhausted, but broken as well...my spirit torn in two, having watched my little girl so scared the night before. My sweet Jaden was remarkable - sharing that pull out chair with, not only his mom, but his baby sister as well...listening to her cries and fighting, beeping monitors and nurses...realizing it was going to be a fight just to get some sleep. He was better then I ever expected him to be, stuck in a hospital 2 states away!

Jaden: my witty, strong, sweet, understanding little boy!

Tuesday was filled with more tests: more blood draws, xrays and attempted ECHO without sedation - ended before it even began when Preslie threw her bottle at the radiology tech. How on earth are you going to do an ECHO on a 2 1/2 year old that is sick, doesn't understand what you're doing, has been poked, prodded, transfered, been fighting high fevers and is hundreds of miles away from any sense of normalcy at all...but once again, I nodded and let the tech catch her bottle, then politely said 'I told ya so.' We were then wheeled back up to our room and spent the afternoon waiting - waiting for Kurt to get off work and come back and see his baby girl, waiting for Grandma to finish her 16 hour drive and join us in Lubbock, Texas, waiting for some answers, and now waiting on the pediatric Pulmonologist.

My sleeping beauty...finally resting!

Kurt arrived as quickly as he could after work and the 2 hour drive he had, Grandma was on her last leg of the drive and would be with us later that night - able to free Jaden of this prision he didn't choose, be a familiar face to the rest of us, be my 'mom' in my time of need...and the Pulmonologist finally made it to our room for a very long, very thorough visit....she came to our room with a whole new set of circumstances, new ideas, a NEW DIAGNOSIS for our Princess - yet again! :(

the unexpected....

2011-03-26T16:53:00.000-07:00

We watched sweet Miss P progressively get worse as the weekend grew near and the idea of traveling back 10 hours with a sick baby didn't exactly thrill me, so we decided to push driving back til Sunday if it ran its course like Jaden's did, then we'd be on the road Sunday morning with a baby girl on the mend. Saturday as we were out running errands before I started to pack up for the morning drive, we noticed Preslies breathing got very fast and labored...there were no doctor offices open that Saturday, so we gave in, and headed to the ER - germs, long wait, more germs, but it was a last minute decision that I am so thankful we made. We signed in and I quickly scanned the ER to see very few seats left open. My first thought was I am going to leave here so angry that we wasted 5 hours to be told she has a viral infection that needs to run its course as we hoped to dodge all the other germs floating around the same ER. Apparently Miss P didn't look good to anyone, because essentially they put us in front of everyone out there and just a few short min later, we were taken out of the private waiting room we were given and taken back to an exam room.

waiting patiently in the waiting room

When Miss P was checked in, she was on IBO, so her temp read normal, but I had explained she had been fighting a fairly low-grade fever off and on for 4 days. In the exam room they decided to do a test for Strep, Flu, RSV and a chest Xray. Chest xray showed some cloudiness in the lungs and definite Croup - narrowed airway-. From the time we were taken back to the time they decided to try to check a urine sample, I had noticed that Miss P was very warm and becoming very agitated - yes naturally the ER does that to you, but the warm temp had me concerned. The nurse rechecked and the forehead thermometer read 103.5, which was then verified by a rectal temp. They then threw her on a monitor for her saturation and gave her something for her fever. She finally snuggled up against me, and began to doze off, immediately her saturation's dropped below 88, and the assumption that some medicine and steroids should do the trip flew out the window. the nurse then entered again to inform us we weren't going anywhere....we were being admitted to Lea County Regional Med Center....yay! :(

Everything just hitting her at once...high fever, low sats...my baby is sick!

It was finally 11 that night that they showed us to our room on the 3rd floor of this very small, very archaic hospital. We got her settled in her crib, filled up the entire packet with Preslie's medial history and said goodbye to J-Bear and Kurt and sent them home. P and I settled in for the night and I closed my eyes hoping the observation period would end in the morning and we could - go home!

The 'croup' tent, which I find out soon after it's a huge waste of time!

The night was filled with the all to familiar alarm sounds that I became very used to after hearing them for 16 months straight. Preslie's saturation levels were staying low and her breathing very labored and worrisome. The Respiratory Therapist brought in a 'croup tent' at 5 the next morning and was doing breathing treatments every 3 hours as well as eye drops to her suddenly very infected eyes. Since it was Sunday and everything seems to be 'slower paced' in this town, the doctor didn't come to see us until well into the day. Preslie's saturation's while away were only a bit over 90, but her fever kept spiking the the doctor didn't feel good letting her go just yet. Observation period had now turned into a 'hospital stay'. Over the next several hours I realized that not only was I doing the job of the nurses, but that in most cases I knew more then they did. After arguing with several of the techs and nurses about how to take a proper, trusted temperature on a baby, Kurt and I decided we needed to get our child out of there. The tech would take an underarm temp that read 97.9, walking away confident in the fact that that was accurate until I stopped her and told her to take it properly because clearly she was NOT at 97.9....rectal temp verified my assumptions and read 102.7....several times this happened. Sunday night her saturation's were dropping into the 70's in her croup tent with O2 being pumped in as well. She wasn't getting better, the care was less then acceptable and I started to wonder how long it really would be before we actually got to see home again.

That face says it all...get me out of here, get me to a real hospital!

First thing Monday morning after seeing my babies heart rate reach 203 I demanded we be transferred only to hear the pediatrician there say 'I agree....'. The next several hours the pediatrician and apparently the hospital director fought with our insurance company to transfer her back to Phoenix. The insurance company felt that despite that was HOME, and all of Preslie's specialists were there, that it was too far and unnecessary to transfer her that far. She said that if we demanding Phoenix it could take 4-5 days to authorize! I had seen the despair too many times pouring from my babies' eyes that I asked to be transferred to the nearest large and reliable hospital so that night we were transported by ambulance 2 hours away to Lubbock, Texas - University Medical Center, part of Texas A&M. ....The second the doors opened, I knew we were finally in a 'real' hospital, with 'real' doctors, and 'real' nurses...

Expect the unexpected...

2011-03-26T12:07:00.000-07:00

I opened my eyes this morning and for a second thought i could feel the sheets of my own bed around me, familiar sounds of my home, and ready to start in on the usual tuesday morning activities - breakfast, kids to school, onto mom duties...it was after that brief second passed i remembered where i really was....Lubbock, tx, university medical center...small pull out chair bed that i wasnt even able to take advantage of the three inches of clearance on either side of me because i was sharing this small, uncomfotable space with my five year old. the familiar sounds werent my two sweet boys awake and playing in the house or preslie sweetly talking in her crib....no, these familiar sounds were reminders of so much oof the unexpected sounds we have been privy to the last two and a half years...sat monitors beeping, children crying in the rooms on either side of us, doors opening and closing as doctors start their rounds, and the heavy labored breathing of my sweet warrior princess in the hospital crib next to me. lubbock, tx....how on earth did life bring us here.
A week ago, Tuesday morning, the bags were packed and by the door -spring break was here and me and the kids were getting out of town with my best friend and her boys. I had jumped out of bed at 5am, anxious to get ready and on the road. Jaden hadn't quite been himself the night before, but in the back of my mind I kept thinking 'it was just a short lived moment' for him - nothing more. However, it was more then a short lived moment for Jaden - croupy cough, fever and a kid that would rather spend the day in bed then going to California. We called the doc early to get an appointment just to see what we were dealing with - nothing in particular - viral, but extremely contagious the doctor told us. NO California for us this week - I couldn't risk getting Jacky's two little one's sick. I was pretty much expecting the rest of us to be next. I sent Kyler off to Cali with is best friend and his parents - my baby is growing up and we accepted the fact spring break wont feel like a 'break' at all.
I talked to Kurt that night and he could sense the disappointment in my voice, so he suggested if Jaden was feeling better the next day to take a road trip to see him. It would be a while til he could see his kids again and we wouldn't be risking getting anyone elses kids sick...our bags were already packed, so Wednesday morning we headed out. During the 10 hr drive I could start to sense Miss P not quite feeling herself, but hoped it would be just a few day thing like Jaden and knew at least once we got there I would have Kurt's help. Preslie's low-grade fever and cough started that night at Kurt's place - Wednesday night. Our plans were to see the sights around Hobbs New mexico, see where he worked and meet his new friends of the last year, then to travel back to Arizona Saturday morning and pick up my Ky bug....oh how plans change!!!
(continued in part 2)

Sight seeing in Hobbs, NM doesn't take long as most of that 'oil' country looks like this!

A New Year...

2011-02-03T09:31:00.000-08:00

The start of the second month of 2011 and I am finally starting to breathe again after a busy couple of months. The first Christmas back home in Arizona, the first Christmas with family and friends down here, the first Christmas in our new house, the first Christmas with our new family dynamic...and of course, me being me, I wanted everything perfect for everyone, especially my children!

Christmas back in Arizona after nearly 12 years of being away left a whirlwind of emotions flying around me and through me. Christmas here, as a child, was always so special...Grandma and Grandpa just on the other side of our backyard - their home always warm, filled with happiness, joy and all the love the Christmas season has to offer, voices of laughter, family from near and far could always be found there. Memories and thoughts of so many years before...the Christmas tree in the front room that my mother spent countless hours decorating with such precision and perfection, the countless varieties of cookies and candies filling both our table and my grandmothers, despite the lack snow and the cold and the frosty white vision of winter that I got used to after years in Utah, the effort that so many residents of this great city go to to give this desert town a unique winter 'feel' as they cover every inch of their yard and home with lights, music, and decorations. It was as though I never left and yet at the same moment, such a surreal feeling to be back home this time of year.

Our dinner group for Thanksgiving - Family and New and Old friends!

As much as I missed enjoying a white and wintery Christmas this year, we tried our best to enjoy every part of Christmas in the desert. We took advantage of the lack of snow and actually, for the first time in years, got to put up Christmas lights in the yard. We even took a couple nights to drive through the city and admire all the houses that went above and beyond, covering every inch of their yard, their houses and in some cases even their driveways with lights and holiday decorations. We were able to branch out and spend Christmas Eve and Christmas Day with more then just family, but new friends, family of friends and opened our doors to anyone and everyone that didn't necessarily have family to go home to. I was able to relive my childhood a bit and introduce my children to my most favorite part of Christmas here in my old neighborhood - luminaries...Christmas eve day we were all outside filling paper bags with sand and candles, lining the road and sidewalks getting them ready to light that evening. And Christmas Day I was able to open my home to nearly 20, for the best Christmas feast ever! It was a house filled with laughter and joy, friendship and family. The kids were blessed to have their dad home and enjoy waking up with him Christmas morning. The moments were priceless and the effort for perfection I worked so hard for this holiday season was not put forth in vain...all of it reminded us how blessed we truly are.

Shortly after the wrapping paper was cleaned up, the dishes done time and time again, the house put back in order after most of the company had gone...it was time to say goodbye to 2010. I knew that this New Years Eve wouldn't be like any of the others...it would be a reflection of so much...almost too much that one year held for me, for my family. It was saying goodbye and accepting a lot of change, it was hope for peace and happiness in this New Year, it was even a little fear of what may be waiting for me around the corner. 2010 was probably the hardest year of my life, filled with so many changes that at times I wondered if I'd make it through. As I held back the tears as the clock struck twelve, I realized that I was still standing, I did make it through...my kids are happy, Miss P is healthy and cordless, I have great people around me, supporting me, helping me and making my life a little brighter each day. Its a New Year...New possibilities, New choices to make, New experiences, New challenges, New gifts and blessings. I start each morning with looking at a picture my mother sent me...it sits beside my bed...it is a picture of two roads in a forest and it reads 'You are always ONE choice away from changing your life.' How true that reads and what a great reminder each day how important each day is, each choice, each moment...I am hoping to live each moment, enjoy each moment and have the strength and courage each day to make the right choice, the right choice for me and my sweet children. So here's to a new year!

Kurt and his kids Christmas Eve

Preslie Christmas Morning

Me and My dad and Grandpa Christmas Eve

Me and my sweet kids Christmas Eve

Jaden,kyler and Miss P in their Christmas best

My boys

A season of thanks...

2010-12-03T20:37:00.000-08:00

In the midst of a season of change...a time when the temperatures change from cold to colder, the leaves change from green, to shades of gold, red, orange and yellow, having graced each branch with such beauty, swaying in the wind of the past year for all of us to enjoy, soon will all be layering the earth having served their purpose. The earth will change from a vibrant array of colors to blankets of white, blankets of stillness while mother earth takes her rest for a season. The skies change as each day the sun rises later and sets earlier, leaving even less time of daylight for all of us to accomplish all the things in our lives. Although change is inevitable in all our lives and not solely connected to this time of year, it is this time of year - the season of thanks, that we tend to reflect upon these changes, events, challenges, blessings and the all stories that took place over the last year.
This season, my time to reflect, stares boldly in my face reminding me that not only have a few changes taken place in my life, but that my life - completely different from this time last year, completely changed and rearranged still holds so many things to be very grateful for.
2010 for the Therklesens, for me, was a year of more changes then I thought, at many times, I could handle. This year, my babies and I find ourselves off the mountain and out of the snow of Utah, nestled in a quaint, quiet and very friendly cud-e-sac where we no longer find ourselves shoveling snow, de-icing the car, driving hours for Preslie's doctors appointments, worrying about oxygen tubes, snow days, ice melt, and the cold-& often times harsh reality of old man winter. Kurt is still building his career in New Mexico, working hard, succeeding, adjusting to all of his life's changes and bravely adjusting to life so far away from his sweet kids. Everywhere I look, every day reminds me of all the changes we've faced as a family. Although the adjustment period, for me, as been long, painful and even so dark and lonely at times that I found myself hiding from the rest of the world, trying to remain myself, whole, healthy and able to get out of bed each morning, I am able to look around my life, take a deep breath and smile. As the last side dishes of this traditional feast were completed I realized this Thanksgiving day, that despite the changes of surroundings, altitude, doctors, therapists, my family dynamic and even some friends, the core of my life still exists, still blesses my life everyday. The dinner table was surrounded by old friends, new friends, family and all the people that mean so much to me.
Even though so many changes took place - for me, for Kurt, for my children, my family and many friends, difficult decisions were made, loss and despair felt , quiet moments of acceptance and prayers experienced, challenges overcome, goodbyes said, tears shared, laughter enjoyed and all the rippling affects that come with the changes and developing chapters of life, I am ending another year with a thankful heart, and a blessed soul. At the end of the day, even though life may not be what I ever imagined, the things that matter most are still surrounding me...as I have climbed out of my lonely hole time and time again this year as I have taken time to overcome and process the feelings and decisions each chapter has held, I crawled out so thankful for all that still filled my life... family -arms opened, love and support offered... - my true and genuine friends, without conditions attached, ready to listen, ready to understand...an amazing father to my children, forever friend, forever a great support and someone I will always admire...my Kyler - the big man of the house:), a golden heart and the sweetest, purest kindness i have ever known...my Jaden - my joy, laughter on even the darkest of days, sweet songs in the morning and jokes in the afternoon....and my Princess - pure goodness, Gods grace wrapped up in a tiny pink bundle with pig tales and a radiant smile...Preslies therapists...all four with such devotion and determination to each milestone to each success, that keep her pushing for each new goal...and so many other amazing new pieces to my heart and joys in my life that offer strength and bring peace and hope.
Even though at the end of each new day, at the end of our changes, decisions, challenges, and with each new chapter of our lives, we sometimes need take a little extra time to adjust, to heal, to become ourselves again and push forward to all the possibilities of a new season, a new year. Sometimes it doesn't happen when you want it to, many times it happens gradually, many times all you can focus on each day is the one day ahead that you wont hurt anymore -that it will all somehow make sense, and with each step believing, hoping and praying that healing is possible and that you can in fact get your life back....it is then you have everything to be thankful for.

Preslie has worked so hard, she keeps fighting and today she almost crawled all by herself! Well done my princess!

Down Syndrome Awareness Month

2010-10-31T21:36:00.000-07:00

October, 2010...a month with so many reminders...a reminder that the holidays are just around the corner, another month closer to the end of yet another year, another day of our Indian summer with the hopes that cooler weather is soon to come and of course a month that holds so much meaning to me....Down Syndrome Awareness Month.
As a mother to a child with Trisomy 21 I feel in my heart that as part of my love for my daughter, it is my honor and privilege to bring awareness of Down Syndrome to all I can. Bring awareness not only about the facts and details of what it means to be born with Down Syndrome, as most of those can be found within the pages of a book or sites on the Internet. The awareness I hope to put out there goes much deeper then cell structure, eye sight, possible medical issues, and learning disabilities. I too wasn't aware of all the medical complications and worries that come with a child like Preslie....surgeries, tests, doctors, cancer, therapies, special need classes, clinics, support groups and so on....those are what I do from day to day, those things are what i worry about as I watch my little girl grow. But those things don't define my Preslie, they don't precede her, they don't show the world what she's made of...they are just part of our life now.

What I want people to think of when they hear the words Down Syndrome or Trisomy 21 is courage, love, overcoming, teacher, warrior, strength, purity , joy and perfection. Preslie has had a long, complex and often difficult 2 years. There have been many illnesses, countless doctors appointments, endless tests and several treatments and surgeries, and heaven knows the struggles Preslie have faced pale in comparison to so many others with the extra chromosome. We have prayed for many of our friends fighting heart complications, waring against other very serious illnesses, and even the tiniest of people, winning the fight against cancer. These things are part of the fear that entered into my heart the day Preslie was born and continue to creep in from time to time as we don't know all that we will face with our little princess. However, there are countless of other perfect little things about my little girl that supersede all of the fear and worry, all of the struggles, fight and illnesses.
Like the smile that shines from her dark room each morning I go in to take her out of her crib - even on the mornings after the most restless or sleepless of nights...the way her eyes sparkle every time she smiles...the curl of her bottom lip and the 'mwwahhh' sound she makes as she leans in for kisses, and how she dishes them out especially the moments I need them most. The determination she has when she cant figure out the milestones that I used to take for granted....the speed she has as she scoots through the house after her brothers and the sneaky little giggle that follows when she knows she's being chased. The way her body automatically bounces and moves as music reaches her ears, and then the biggest smile. The mischievous manner in which in a split second she'll scoot from my sight and find the nearest open bathroom and empty any and all cupboards she can open either into the garbage or tub in no time at all. the sweet way in which her arms curl out in hopes to be scooped up into my arms and then with the most sincere love, wraps her arms around my neck, nestles her head to my shoulder and gently pats my back with her tiny hand, if simply to say 'I love you'. The excitement she radiates at the simplest of things - bubbles being blown around her, twinkle lights within her sight, her brothers walking in the door after school, a water fountain that was stop to let her feel the water cascading down and run across her fingers, nightly bath time, and our morning walks to school...the way she takes every opportunity as the family dog passes by her to reach out and get one touch in, before he realizes he just got too close and hurries off and she does so with the biggest of smiles. The sweet way she gives hi-five and each time lets out the same sound effect of 'ahhhh' with a grin like she was just included in the most elite of clubs.
She may not talk, or walk, or even stand. She cannot interact with her siblings or the other people that love her like a normal 2 year old can, she hates to be in crawling position, and doesn't understand most of the things we say to her. She is behind by over a year on some of her development, she cries out of frustration because she cant communicate what she wants, but she is simply perfect in every way. She radiates a love and pure goodness every moment she's on this earth. She brightens every room and ever life that's around her. She makes me a better mom a better friend, a better person every day. I no longer take anything for granted, I no longer complain at all the little things that get me down from time to time. And every day I thank my Father in Heaven for the love and pure adoration I have for my little girl, for someone that people don't always understand, for someone that often time causes people to fear or worry because they haven't taken the time to get to know her, my Preslie, my angel girl.
That's what I want people to be more aware of this month...all the people around this world that were given an extra chromosome are some of the people that have ever or will ever walk this earth!

I am more aware in every way - not just in all the terms and lingo I wasn't used to before, but aware of all the sweet, simple things in this life I took for granted. I am more aware in my strength, in my weaknesses and everything in between. I am more aware of real struggles, and real triumphs. I am aware of what perfection looks like - blue eyes, honey colored hair, the sweetest of smiles....I am now aware how very blessed I am every single day because of my little girl. A blessing I never knew I wanted, but needed oh so much!

Nine.Seven.Zero-Eight!

2010-09-07T20:52:00.000-07:00

As I tucked my sweet princess in her crib last night, humidifier on, bottle full, blanket snuggled under her chin , a new baby doll in her arms, and the same beauty and peace in her eyes that i am blessed to see every night as I wish her goodnight and peaceful dreams, I was astounded by her pure, perfect blue eyes that were, on that day, one year older. It was this blessed day 9.07.10 - 2 years ago that our angel blessed us and changed our lives for the better - in ways I would have never imagined possible. I was reminded of all the uncertainty that came with the announcement 2 years ago that our baby girl was born with something extra special. It was in that moment, 9.07.08 that I began a significant transformation, a daily transformation. The impossible had suddenly become more then possible, but had become a reality. Me - a mom of a child with disabilities...and not only disabilities but months and months of ongoing medical mysteries, medical issues, medical hurdles and medical miracles, was no longer doubting that I could 'handle' such a experience, but embracing this new gift and grateful - every single day for it. The doubt and uncertainty I had always felt deep within myself began to become something beautiful, something magical. My heart changed, my eyes began to see differently, to understand more, to appreciate the beauty this world has to offer that seemed to pass me by before. My mind became more open, more understanding, more aware of the big, complicated, amazing, ever changing world swirling around me with these miraculous beings changing peoples lives every day, by simple acts, simple acts of just being themselves. Preslie doesn't do anything extraordinary every day, yet her presence leaves and extraordinary feeling with most people that allow her in. She doesn't walk, talk, or even understand much of the world around her, yet she gives us all hope, faith and the knowledge that God does exist and loves us so much. That simple, yet profound fact radiates out of her spirit every day without apprehension. She is the purest of God's creations, she is the most courageous of beings, the most lovely and perfect...she is an angel, a glimpse of eternal peace we all spend so much time hoping for and rarely see in our busy, hectic lives. She carries with her a spark every second of every day that electrifies everything around her, leaving it more alive, more beautiful...and all of this she does without knowing it. She smiles and in that moment the world is right again. She figures something out and in that moment I feel like the luckiest mom in the world. She laughs and I feel the presence of heaven all around me. My baby girl was not a gift I ever asked for myself, but something I always needed.

The last 2 years have been busy, often scary and uncertain, but every moment of fear, doubt, and exhaustion is always replaced with hundreds of moments of perfection, of heaven on earth. We are humbled by her, taught by her, guided by her, and filled with love, hope, gratitude from deep within her every single day she is part of our family. Our lives have changed so much over the last 2 years, new address, new dynamics of the Therklesen family, new jobs, new schools, new friends...but one thing remains constant through all of the uncertain times....the fact that we are better because of her, better because of her light, her spirit, her gift to us. As I closed her bedroom door that night and walked away slowly to take in the light she radiates so sweetly from her, I felt such Gratitude and love for my Father in Heaven for loving me enough to give me one of His best!

Happy 2nd Birthday my love, my angel, my light!

Reaching out...

2010-09-02T11:44:00.001-07:00

It has beyond amazed me since Miss P's birth the kind of families around us with children like Preslie. They are giving, kind, selfless, strong, courageous and some of the very best people I know. Many times, families that are expectedly and even unexpectedly blessed with a child with special needs find such joy in their journeys no matter how difficult they may be that they end up blessing their home with another child with disabilities. These families have a love and strength that speaks volumes of their character, their love and their heart. They often sacrifice more then any of us could truly realize to find, pay for and bring home another sweet child in need. One of my dear friends from Utah has 4 boys already, 2 with special needs, one has very critical needs, yet they are on a sweet journey to finally bring a baby girl into their home that also happens to have Down Syndrome. I have blogged about this family before and have always had so much love and respect for them as parents and friends. If you get a chance, check them out, give them any support you can, and pass it along.... they are sooo close!
http://www.bringmakaylamariehome.blogspot.com/

Time...

2010-08-30T12:43:00.000-07:00

Time marches on...the clock keeps ticking, even when you beg it to stop for just the day or the hour to take it all in. The sun rises and sets, even when you aren't sure you want tomorrow to come or are ready for today to be over. The seasons change, even when the warmth of the summer wasn't long enough, or the chill of winter just seems a bit too much to bare. The world doesn't ever seem to stop when your heart is breaking, your world is changing, or the existence you've always known is now unrecognizable. Time marches on when all you ask is for a moment to get your bearings straight, place your feet back firmly on the ground and feel right in the world again. Time marches on...

when all you want to do is rewind and do it all over just one more time, or go back and figure out why things are the way they are, or simply stop and enjoy all the precious, priceless moments just a little bit longer, before they fade with the passing time.

Time doesn't seem to wait for anyone, it marches on even when you feel so lost , so overwhelmed, so insecure in the changes around you...time wont wait and carry you through or help you move along. The world spins madly on no matter how many times you beg it to stop. The alarm still sounds at the same time each morning, breakfast is still the first meal of the day, bills still have their due dates, friends still need you, doctors appointments wont wait, and if you take too long realizing this, life will simply pass you by, friends will continue on, some leaving you behind, weeks and even months will fly past you leaving you in a fog almost feeling as though you didn't live a moment of it as yourself.

Time has marched around me, over me, past me and I haven't been ready for any of it these last few months. Change has come and come again, decisions have been made, regret has danced its way in and out of thoughts and through all the whirlwind of change, emotion and life, obligations and many important things have come second if they've even considered at all, while I have simply been treading water hoping for the shore to come soon. I know I have disappointed many, upset a few and left unanswered questions, assumptions and judgement in the heart of several. Unfortunately moments that pass cannot be gotten back, friends problems that I wasn't there for cannot be retrieved and there are no 'do-overs' with all the rest so all I can do is turn off sound each morning that reminds me its a new day, place my feet firmly on the ground, and head down the hall to start a new dawn with gratitude in my heart for what I am still blessed with each day,and a silent prayer for the friends Ive neglected, the children that have witnessed far too many tears and the family that I've left behind. I hold onto the fact that I am not alone, that their are still friends and loved ones that call or email knowing my distance and neglect wasn't intentional , that I have family that supports me and does understand all that we have gone through, and a Father in Heaven that knows I am doing my very best.

Financial worry finally has been replaced with a fresh start, new and wonderful opportunities, second chances have been given to me, to Kurt, to my Preslie, and now, on top of it all, the kids and I are enjoying a new zip code, new experiences, new challenges, and most of all new blessings. Following Preslie's Nissen surgery and moving to a much lower altitude she has enjoyed a tube free existence for the last month now, the boys are meeting new people and forming their own memories and experiences in the very same places I was at their ages and I, despite my fears, insecurities and the overwhelming changes that some days consume me, am finding new hope, peace and love from friends family and others that seem to carry me through this crazy life.

I am sorry I haven't been present where I should have been, I haven't been the friend that I should have been to many or taken he time the I should have to check on several, but all of you know, I gave what I could when I had anything to give. I am trying to find my place in my life again and be 'ok'. I am trying to be the single mom I need to be, the friend I should be and daughter, sister, and all in between that I haven't been.

Time marches is on and all I can hope for is that as I march with it I can find new hope, new love, new joys, new lessons, new memories and peace in my heart for each new day....

Me and My babies

The boys and their best friend Jackson standing out infront of my old elementary school - their new school in Phoenix

Miss P after the Nissen surgery in June - a new start ahead!

One step at a time...

2010-05-03T13:12:00.000-07:00

So much of our determination to get to where we are going all begins with small steps, one infront of the other, not looking too far ahead, but focusing on the next horizon, courage to just conquer that day the day before us, not worrying too much about tomorrow or the day after. And with our journeys comes change, adjustments, challenges, blessings and hope, all requiring us to constantly tweek our path, still moving forward but slight adjustmetns to the right or left to stay on course. To say that there has been a lot of tweeking lately would be an understatement, but in the same breath I can also say, although a tough road, we are very blessed. Life is changing for the Therklesens, life is very different for us today then it was only a few months ago, but the core remains the same, the heart and soul of the Therklesens still radiating strong, still hoping, still moving forward if only a few small steps accomplished each day, we move forward with hope.

Our Miss P still keeps up busy, keeps the joy and hope alive in our home. Almost 20 months old, I finally feel like we are getting to the bottom of her on-going health problems. Still fighting repiratory infections, currently in the middle of yet another one, she contiues to impress me with her courageous, flawless, smiling spirit. That even after a night of barely any rest, she opens her eyes with a smile and a joy that I can only hope to feel one day. At her last cardio appointment we were informed that a sweet little miracle was granted to our angel and her ASD has already closed. Her heart, for now, is whole, is working well and shouldn't be giving us any other problems (shouldn't the operative word). However in the midst of miracle and healing it has become very clear that our Miss P's lungs are in bad shape. Her GI doctor, a wonderful woman, ordered a pH probe to investigate the extent of her reflux and aspirating issues. So after a wonderful week long vacation south to Phoenix for spring break, the night after we returned, Miss P and I checked into the RTU at Primary's for a grueling 20 hours of the horrible reality we weren't quite aware of. The inserted a G-tube through her nose and into her stomach. In the tube were probes that would measure the acid ph in her stomach as well as quite a ways up her esophogus and the other end attached to a computer that collected data and recorded all the things going on in Miss P's little body. She was then only given unfiltered apple juice every 4 hours, which never quite filled her up but the only thing that was allowed. It was a long night, very restless and painted a very clear picture as to the pain she must be in every single day. In a 20 hour period Preslie refluxed 182 times. While laying down she had acid in her esophogus 20% of the time - NORMAL = less than 1%. Her score, based on several critera was a 66 - Normal: 0-16. In a nutshell, she failed miserably and surgery is a must. Miss P will go in on May 20th for a Nissen procedure: the will wrap the top of the stomach around the bottom of the esophogus to help keep things down. Another surgery in our midst but hopefully one that will finally fix my little girl. So many things makes sense now, after the clear results from this test - lack of sleep, constant respiratory infections, constant spitting up, horrible sounding lungs and cough....all makes perfect sense. Our warrior fights on, on cold, respiratory infection, one breath at a time. And she does it always looking like a little princess!

Hope, faith and glitter

2010-02-21T09:13:00.000-08:00

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. Helen Keller

There come many times in our lives where our character is tested. We reach a fork in the road, windows and doors are closing all around us, our journey changes, sometimes by choice, but many times without our consent, and certainly without us being prepared for such changes. We are hoping to see new doors opening and arrows or signs pointing us where to go, maps as to which path to take and a surety that the correct decisions are being made. However, many times all we can ask for is peace in our deicsions, hope in the confusion and light to guide the way, slow as it may be at times.

There have been many moments in my life as I am sure all of you have just thought of countless moments in your own lives that fit such a description. Especially over the last couple of years, where I have found doors slamming shut infront of me or large windows opening that I must go through that I wasn't prepared for...this time however, has brought with it a great test of character, a great test of who I am and what I am truly made of. Many doors and windows that I knew I must travel through, creating a new path that I wasn't ready for like my sweet Preslie, I soon realized, after only the first few steps that it was 100 times more a blessing then a struggle and that even on the hard days I would be eternally grateful for this journey for the path that now lights my way even through my darkest moments. Preslie was one of the first moments that I realized I was stronger then I ever gave myself credit for. In her I find such peace, strength, the glitter that turns everything beautiful.

It's only been lately, over the last couple of months that my faith has been low, and although each moment I spend with Preslie, with pure goodness and beauty, are perfect moments. Its all those times in between that have been dark, dreary and have brought a fear into my heart that I wasn't ready for.

As many of you know, our finances have been nothing short of a disaster for the last couple of years and even though we've closed our company, been laid off, had days and weeks of no work there was always a silver lining. Its only been in our latest challenges, our latest days of waiting and continuing to tread through this limbo without drowning, that fear has overcome hope. 7 months of preparing and hoping for our future, for a new life for our family came to a screeching hult a little over a month ago and the future held more uncertainty then it did hope or options. We've been waiting for our dreams to come true since the beginning of the year without the hopeful view through any new opening windows or doors. Many days as I am treading through the uncertain waters, I am only hoping to survive. The best of myself pushed aside and my will to simply make it through that day has taken over. I have become a cranky mom, a horrible friend and a less then wonderful wife. Yet a small number of my closest friends have been my beakon, bringing me back to port, offering help in the days my head is sinking...it is those friends, the phone calls, emails and hope they lend me that have been slowly bringing me back to life. Our future is still uncertain, but I can look to the lights around me, the friends that love me and know me, the family that is there to catch me when I fall, my children to lend a hand and lately a tissue to wipe the tears and my sweet Preslie, the glitter that makes everything beautiful again.The prayer that even though I may not understand, I will find peace in each day, strength to make it through and the will to find the best of myself once again. I hold onto all of those things and no matter what happens in the days and weeks to come, it will all work out and somehow we'll all be ok.

In the midst of our struggles, our sweet P has over come challenges of her own...although she cannot crawl yet, her determination to to get where she needed and wanted to go prevailed!

Climbing out of my hole... with updates...

2010-01-08T12:13:00.001-08:00

I've noticed lately that I have disappeared and neglected many of my dear friends... Emails coming in, phone calls, reminders that I have been away from 'blog world' and my friends for quite some time now. It's been a month of madness, chaos, and me trying to find my way once again...it seems as though, as we've been fighting our latest battles, I needed to 'disconnect' for a while, step back and just take one day at a time. So with that, here's a recap since my last 'blog' visit...

Preslie had her surgery December 4th. Recovery is pretty much over. She has had many good and bad days, but handled most everything with grace and sweetness as she usually does. She still is not sleeping very good, so we have a follow-up sleep study to schedule and an appointment with yet a new medical department - GI in February. They want to make sure she's not refluxing into her lungs. So we'll have a few tests done after we see the doctor, probably upper GI and PH test and hopefully find out just how yucky her lungs are. For now, I enjoy the nights she sleeps all night, but don't go to bed too confident as you just never know! I've been taking her in each month for her Synagis shot so thankfully this season we've avoided RSV so far. Although she's not close to crawling yet, she gets on her stomach and slides herself backwards all over the wood floor. She is doing much better on self feeding and we are hitting the sign language really hard in hopes to help her communicate her needs and frustrations much better.

Pre-surgery and Lortab, she'd take anything, after Lortab - nothings getting in!

Her new 'high chair' to join us at family meals...she loves it!

December 11th, we celebrated Jaden's FOURTH birthday. As the 'middle child' he's been affected the most by all the changes, doctors appointments, illnesses, hospital trips and all else that has come with his baby sister. It took him close to a year to get back to the 'Jaden' we knew after Miss P was born. So we wanted to make sure his birthday was very special this year and, despite our busy schedules, he knows just how priceless he is to all of us. We usually do a birthday dinner with friends and family for our kids at our house, but we decided to change it up for Jaden and went out. He was so excited he could hardly contain himself most of the night. Dinner, dessert, gifts, family, singing...it was what he needed. He certainly keeps the laughter alive in our home and reminds me each day to breathe and smile, despite the challenges.

Jaden at his birthday dinner, enjoying his Sundae!

Celebrating the big FOUR with family!

Kurt left for a week to Arizona to complete his certifications on a computer program for 'construction scheduling' that he's been training for since July. It was an intense week of classes, and the stomach flu (that we had all battled the week before), but he managed to survive it all and came home to chaos. During his absence, we enjoyed a huge storm of 2 feet of snow during which I got stranded, stuck, hiked home several times with kids in arms, dug my mother out of the snow, lost the heat in our house for a week and a half and decided I am liking winters less and less here in Utah! He came home about a week before Christmas at which time I finally realized Christmas was right around the corner and I hadn't done a thing. He also worked only a small handful of days during December which makes the load even heavier.

Despite the fact that our main source of heat was broken and space heaters just aren't the same, that Kurt was pretty much unemployed and that our stay in 'limbo' was becoming ridiculously long, our Christmas was peaceful and quiet, just as it should be. After experiencing such amazing generosity last Christmas, we decided with the boys that though we don't have much, we would sacrifice what we did have to make another families' Christmas just a little bit brighter. The kids agreed on 3 small gifts from us and the rest would go to help someone else. Christmas Eve morning Kyler and Jaden helped me wrap the gifts and drop them off where they needed to be with a peace in our heart that we needed. Christmas Eve some of my family came up and froze with us in our house as we enjoyed a wonderful Christmas Eve dinner and played games.

Preslie and Grandma Christmas Eve

Digesting after a nice dinner - Christmas Eve

Me and my princess - Christmas Eve

Grandma, me and my boys - boys all bathed and ready for bed, but far too excited to sleep!

Kurt and I

Christmas morning was quiet, peaceful and pretty close to perfect as the boys opened their couple of gifts never asking or complaining for more and me soaking up all the grateful smiles sweet, generous spirits of my boys! Preslie didn't know quite what to think except that wrapping paper is a lot of fun, the Christmas lights lend hours of entertainment and new gifts are just as good fully wrapped as they are unwrapped. My mother joined us a few hours later and spent the day watching movies, relaxing and enjoying left-overs. The day was perfect.

Grandma - trying to convince Miss P that gifts are much better unwrapped!

Since Christmas, we've been able to fix our pellet stove and restore heat, at least heat that doesn't leave a chill in your bones as space heaters do, patch Jaden's head up once again as he got in a fight with the end of a 'free weight' and lost terribly, get the kids back into a routine, and Kyler back to school, schedule Miss P's newest appointments and finally fill ourselves with hope, hope, hope as the start of yet another New Year, another perfect time for hope, for opportunity, for change, for growing, for learning, laughter and most of all, another chance, another year to get it all right!

Miss P's latest adventure...

2009-12-11T10:46:00.000-08:00

It is taking me a while, but I am slowly getting caught up on all the latest Therklesen news!

After 4 days of unpacking from our Thanksgiving trip, getting Jaden on the mend and cleaning up and disinfecting after his bouts of 'sickness', it was time to pack again. However this time the trip wouldn't be as far, or as long....Friday morning, December 4th we were to check in at Primary Children's at 9 am for Preslie's surgery - Tonsillectomy, Adnoidectomy and a bunch of scoping. Preslie woke Friday morning in her usual, happy, smiley, beautiful mood and didn't seem bothered by the fact we were loading her in the car before she had breakfast or anything to drink. The boys were taken care of, and off we went down the mountain to an 'all too familiar' place once again. We sat in the 'all too familiar' waiting room to hear our names called, then did the 'all too familiar' pre-op checklist. It was in the 2nd waiting room, waiting to meet the doctor and anestethiologist that Preslie's empty stomach became an issue. She was ready for breakfast, ready for something! After showering the little Miss with lots of kisses and handing her over, we walked the very long and 'all too familiar' hallway once again, tears in my eyes, thinking back years before to when I stood in that very same hallway crying while Kyler got his broken nose re-broke and set and I very adamantly commented 'I am such a wuss, crying over this...I am so glad we aren't one of 'those' parents who have a medically fragile child....I couldn't do it.' Now, 4 years later, we walked those halls to the waiting room as 'one of those parents'....parents of a medically fragile child, parents who have walked that hall now a few times as well as journeyed through many of the halls of PCMC. 3 surgeries, countless illnesses, PICC lines, countless blood draws (and the scars to prove it), ECHOs, sleep studies, xrays, 9 sedation's...all in only 15 months. But we walked those halls, not with our heads hanging in despair, but with our chins up, changed because of our medically fragile child, better because of our sweet miracle girl.

After a quick bite to eat and a few extra minutes spent in the surgery waiting room, her ENT came out to let us know that her surgery went well, the scoping showed nothing abnormal and that she would be ready for us soon. I sat in anticipation, relieved for a few more minutes before I was able to go back to the PACU. As I walked through the heavy double blue doors I could hear Preslie's faint and disoriented cries and went straight too her. A nurse was trying to console her in one of the rocking chairs, but she was fighting it with everything she had. Her eyes locked with mine and she started to cry harder, arms stretched out for some familiarity...her mother! for the next hour I held her in the rocking chair, trying to calm a very frightened, very confused little girl that just wouldn't settle. Not even 2 large doses of narcotics would calm her...she arched and pushed, cried and fought for over an hour while they tried to find us a room for the night. Kurt sat anxiously awaiting any sort of word in the waiting room, hoping nothing had gone wrong. Finally they found us a room on the 1st floor in the RTU for the night and escorted the 3 of us down. Preslie, still inconsolable had been so restless, she had kicked enough to make a complete bloody mess of her IV in her foot, which they cleaned up and re-bandaged once in her room. Kurt then got a call for work, so shortly after being in our room, he left for work, while I tried to get settled for a long afternoon. It seemed as thought the 1ml of Lortab just wasn't doing it's job so we waited for approval for a larger dose for a very unhappy little princess. Shortly after I got her to sleep in my arms, my savior for the day, a dear friend, Lacy showed up to give me some reprieve, some girl talk and a distraction from this quiet room, with lots of medical equipment and no windows! :) It wasn't until about 10 that night, and a triple dose of her pain meds that I got Miss P finally settled in the bed next to me, drinking her bottle and still.

The night was long as her sats were a bit lower then normal and in her 9 months on O2 has become an old pro at getting those cannula's out of her nose. It was a night of beeping, replacing cannula's, nurses, pain meds and the usual restless sleep you expect in a hospital room.

Kurt returned Saturday morning and we were finally able to take her home Saturday afternoon. We've had good days and bad days, rough nights and good nights, all that's expected with this type of surgery on such a little girl. Her Lortab was making her throw up, so we finally got that changed and even though she's not eating much, she's keeping hydrated and taking everything in stride as she usually does.

Unfortunately Kyler decided to add to the excitement and began his stomach bug that Friday night at Grandma's as well, (the night of her surgery) and then it was my turn, 5 days later. We're hoping now that the stomach bug passes Miss P completely as it is the last thing she needs now. Her sats have been a bit lower at night when she wins the fight with the cannula's which is to be expected. So, we continue on with her recovery, knowing we've taken the first of probably many steps to get her cordless once again. We'll next address the pulmonary hypertension that the doctors all think she has now, her reflux which might be aspirating into her lungs as well, and a follow-up sleep study. For now, we worry about Gatorade, jello, ice cream, and any other soft indulgence my sweet princess needs.

Thank you dear friends and family for all the texts and emails to check on our little girl and give your support!

Obviously a 'pre-surgery' photo...our happy little girl!

Pre-surgery...having way too much fun with the paper!

Post surgery - Post PACU in our room, calm, but not happy, yet!

Finally, with a triple dose of Lortab in her!

Saturday morning, getting out of our 'windowless' room!

A perfect Thanksgiving

2009-12-08T13:47:00.000-08:00

It was 8pm Wednesday night...the car was packed, the house locked up for the weekend, the boys snug in their jammies with pillows and blankets in hand, mom and all the rest was loaded into our car, the pies placed just perfectly so they wouldn't get ruined and we began our 10 hour journey south to the White Mountains of Arizona to spend this wonderful holiday with my mom's family...aunts, uncles, my grandmother, cousins and 2nd cousins...all anxious to finally meet the angel of the family...the sweet princess that has already brought them so much joy and worry and yet, after 14 months, none of them had yet met her. We arrived at my aunt and uncles 6 am Thanksgiving morning, crawled into bed to hopefully shut our eyes and drift off for any length of time to hopefully have enough energy to make it through the busy day. Of course Miss P had slept most of the drive, so she was ready to begin her day just as I was ending mine. Thankfully as the choas of Thanksgiving preparations began, sleep deprivation was replaced with excitement, hard work and the craving of all the best of Thanksgiving trimmings.

We had rented a church building for Thanksgiving, to better fit all the family members and not have to worry about everyone fitting and cooking in someone's home. We met at the church at 2, unloaded everyone's car, began the final preparations, then enjoyed a wonderful afternoon of food, laughter, basketball, and delicious dessert. Everyone finally got too meet our sweet little Miss and endulge in her beautiful and perfect spirit...something we are lucky and blessed enough to enjoy each day. I even worked off a few calories with a couple games of basketball with my uncles and cousins. And for anyone that really knows me, I certainly was NOT blessed with a natural talent when it comes to basketball! :) However, there were a lot of laughs, sore mucles days later and despite the lack of my skills my team won both games! The rest of the weekend was filled with shopping, relaxing, leftovers and late late nights with my family playing games. It reminded me more of how many wonderful things I am truly grateful for. A family that I only get to see every few years, where time and distance doesn't seem to matter, laughter and love always takes over. Jaden decided to end the trip with a bang and spent most of Saturday night throwing up, so our drive home was interesting and long. His illness lingered for several days after that, as he never really does things half way. But despite the extra challenge, the weekend was perfect, a great reminder of everything I have to be thankful for.

'SOME' of my mom's family - Thanksgiving 2009

Great Grandma was thrilled to meet and hold Preslie for the first time!

My Aunt Kathy meeting Miss P - something she's been looking forward to!

Me and my girl - Thanksgiving 2009

Aunt Gena and Miss P - They actually had a very strong bond from the first day!

Preslie completely 'at home' at my aunt and uncles house in Arizona!

Gratitude and Thanksgiving...

2009-11-25T06:33:00.000-08:00

The world has seemed to have succeeded in making this time of year more about rushing, chaos, traveling, shopping, stress, worry, making the right dish, cooking enough food (which I am not sure I know of anyone in the history of Thanksgiving that has actually run out of food), too many things to do, too many people to please and never a moment to just sit down and watch the time pass ,then it is about the simple things, like reflecting on all the wonderful gifts we have, all the amazing and sometimes miraculous blessings we are given each day and that no matter how chaotic, hard and dark our lives can become sometimes, there are always many blessings to count, many things to show gratitude for.

We, as a family, had started to allow ourselves back into the narrow, dark and dreary valley that we have spent so much time in in past years recently, allowing all the 'why not's,' and 'why us', and uncertainties plague our minds so much we had lost the strong focus, the clear perspective we were gaining. Mind you, in the last few weeks there have been several things that have hit our family hard and fast and have caused a great deal of reacting, uncertainty and fear all at once. Dealing with these issues one at a time may have caused more responding then reacting and may have not had such an impact on our emotions as it has coming all at once. But it is what it is, and a lesson has been learned:

For several weeks now I have had my own personal struggle that in the grand scheme of things is certainly small but it's something as a, now grown woman, has been hard for me to deal with. I have had issues with my skin since I was a teenager as so many of us do, but most people seem to grow out of it all as adolescence passes. Unfortunately, mine has seemed to have gotten worse and it's been something that affects my self-esteem greatly. I am sure that the stress I allow to take over only ads to the frustrating cycle I am in. So, with that, and the fact that Kurt and I don't have medical insurance right now, I had held off trying to get on some medication to clear up my skin until we could financially justify it. Finally the time had come and I couldn't take it any longer. I was able to get my old prescription I was on years ago, a medicine called Setpra. I picked up this medication 2 days after the cyst began on my neck and the day before I went to see the doctor. The doctor, after removing the cyst and the infection that had attacked it, put me on an additional antibiotic, Keflex, not knowing I was already on Septra, and decided to culture the infection. I asked the Pharmacist if taking both Septra (for my skin) and Keflex (for the infection) at the same time would be ok and he said sure. So I began both medications. I have since gone back to the doctor 3 times to get the hole checked, repacked and bandaged, get the results of the culture (which came back STAPH infection), finally seeing the doctor Monday for the last time. My neck seems to be healing and I am to finish all the Keflex to make sure we killed all the staph infection. A few hours after I returned home, I checked my messages only to hear a concerned nurse on the phone telling me to call their office immediately because they need to switch meds on me right away. When I called back the doctor's office, now worried and confused, I was informed that the final culture came back on my infection and not only was it staph, but MRSA (methicillin resistant Staph Aureous), a lot harder to kill and a lot more dangerous. I had been taking the wrong antibiotic since it was assumed it was a simple Staph. She said she'd be calling in a medicine called 'Setpra DS' right away. I shook my head in disbelief. Not only had I put off going to the doctor, for several reasons, but finally conceded to family pressure, but ironically enough began the medicine that I needed the day before I went to the doctor without even knowing it...a medicine that very well could have kept me from ending up in the hospital or even worse.

We are led and guided each day by great design. Many times those things causing stress, chaos, hardship and tears are given to us ultimately for our benefit, but how many times to we stop to say thanks for all the hard, complicated, painful moments? How many times do we show gratitude for the lessons we learn each day? How many times do we approach the next obstacle, trial or hardship with a smile, saying 'thank you, I am prepared to learn, exercise faith and become better?' I know I don't! It was Monday that I stopped my whining, stopped my worrying, stopped stressing, looked up and uttered a simple, 'thank you.' Every life is rich and blessed in it's own, miraculous way. We just have to take the time to look around and notice the simple miracles each day.

Enjoy your families, enjoy the shopping, enjoy the hustle and bustle of this glorious time of year. Enjoy the feast upon your tables, enjoy the traveling, enjoy the crazy moments with cousins, aunts uncles and friends. Just stop every once in a while in the midst of it all to say 'thank you'...not only for all those tangible things we touch, love, and get to enjoy every day, but for all the unseen miracles, for all the promptings, for all the invisible wings that carry us through. It's those things that make the rest of it - possible. I know I am thankful for the promptings I've received these last couple of weeks, for the wings that carry me through my trials, for the lessons I've learned that I didn't want to and for the hard moments that have brought me to where I am today. I am grateful!

My mom and her 3 of 4 kids!

Smooth Sailing...

2009-11-19T13:46:00.000-08:00

There is certainly something to be said about 'smooth sailing', enjoying the calm seas, uninterrupted travels, where each day has a purpose and as your destination is getting closer, the journey is being enjoyed and the calm waters are truly appreciated. The warm sun setting on the horizon, the strong vessel carrying you along gently rocking to and fro on life's uncertain seas, and peace and tranquility surrounding you and the thought of anything going awry is so far out of your mind because you've been enjoying the smooth sailing for so long now.
The buzzer sounds , I roll over to turn off the alarm clock, oximeter, concentrator and my feet hit the ground with a thud...smooth sailing over for at least 12 hours until my head hits the pillow again and I can escape back to the beautiful, and peaceful open waters!
Last Friday we were finally able to take Preslie into her Pediatrician for her very first Synagis shot (a anti-viral vaccine for RSV), a shot that we have fought very hard for and after losing the battle last year, consequently suffering the horrible Virus because of a prior denial. But this year we fought hard and won. We briefly met with her doctor and went over all the recent test results and what was to come with the plan at hand. He feels that Preslie is already suffering minor pulmonary hypertension due to her severe sleep apnea and decided to put her on a daily inhaled steroid to hopefully strengthen her poor functioning lungs that have been tortured for some time now due to her aspirating and illnesses. Inhaled steroid to be used once daily via nebulizer - CHECK. Next a prescription for a CBC to be done before her surgery to get blood counts, namely neutrophil counts, to determine if neupogen shots need to be given before surgery to raise those feisty numbers. Prescription in hand - CHECK. Finally, the necessary evil, Synagis shot, once in each leg...band aids, screaming, kicking, miserable baby girl, relieved big brother that his arms and legs dodged the needle - CHECK.
Possible side effects that can and may be expected with the Synagis shot (that we have to get once a month til April): nausea, vomiting, poor sleeping, congestion, runny nose, upper respiratory infection: check, check, check, check, check and check! Friday night sleep was something being enjoyed by the neighbors, our friends, family and my husband, but not by the princess or I. The congestion began Friday and has yet to clear. Blocked airway through the mouth from apnea + congested nose = NO sleep, EVER! Saturday she spent the morning spitting up food: crackers, cereal, water, which she has never done before and sleep is done in short intervals these days. Shot # 2 is only 25 days away...can't wait!
I figured since medically I have had 'smooth sailing' for quite some time now, why not shake things up!? Saturday night I noticed a very tender bump forming on my neck just to the left of my throat. It was very tender and grew quite rapidly. I had thought, living up in the 'sticks' it could have been some sort of spider bite. As Sunday and Monday came and went the pain increased so much that I was continually taking Tylenol or Ibuprofen to ease the discomfort and the bump was now the size of a large marble and bright red. Since Kurt and I were uninsured I was hoping that as I applied ointment and hydrogen peroxide , that it would mysteriously go away, saving me time at the doctors and the money. Unfortunately that wasn't the case and by Wednesday I couldn't handle the pain any longer so I made an appointment with a local physician. I was hoping for a simple spider bite diagnosis followed by a even simpler remedy and home we'd return. But as we know, life is rarely that simple. After a brief meeting with the nurse and doctor, it was explained that Surgical excision would be needed. Fortunately they could do it right there in the office, unfortunately its not fun nor painless. Nurses and office staff came to take Preslie and Jaden for the next 45 min while the doctor opened, drained and tried to remove the very infected cyst that had quickly invaded my neck! He sent the contents to the lab for culturing, etc. and then packed the opening and dressed it until Friday when I return to get the packing removed, sewed up and hopefully given a concrete answer as to what I am dealing with. I left the office almost shaking as the anesthetic wore off and the pain set in and nauseous, realizing the full effect of no health insurance! For now I am enjoying 4 doses a day of antibiotics, very helpful pain pills and a very sexy dressing of white bandages. At the Therklesen household, you never know what's next!!!

Tweaking my perspective...

2009-11-11T12:20:00.000-08:00

There are some days that as the darkness lightens throughout the house and morning is approaching, I awake with a feeling of power, gratitude, strength, determination, hope, a giving heart and a crystal clear perspective. I feel as though that since we've survived some very dark, uncertain moments, and even come out of them actually better people, that I can take on the world. That there is nothing else that can happen to us, to me, to my loved one's that I can't tackle head on and be an example of faith to everyone, even myself. Then there are days that as the sun is rising, the dreams of the night are coming to an end and reality is waiting for me, the day is meant just to survive. I walk a little heavier, the power is gone, I try to remind myself of the gratitude I have, my hope is dim and my perspective is cloudy as I just want to get through the day. My thoughts race as I try to motivate myself to do something good in the world, get things accomplished and be a great mom, wife, friend, etc., yet I find myself wondering how I ended up in the place I am standing, how the circumstances around me can change so fast and most of the time, the events that led to this feeling are so very unexpected. As I spend a couple days surviving, not thriving, but just getting through each moment, each hour, I begin to dig deep for that strength I always knew I had, but was somehow misplaced, I look around me and count my many blessings and I try my very hardest to bring my perspective once again into focus realizing that compared to so many, my issues, my demons, my problems are small, insignificant and really our greatest gift is how we chose to view the world around us. Once this happens, my mind slows it's pace a bit, I can concentrate on the tasks at hand, the knots in my stomach begin to untie themselves and I realize that we've always gotten through whatever mess we've been in, whatever obstacle has been in our way and whatever chaos fills this home and our hearts. It is then my gratitude increases, for the friends and support that seem to walk to my left and to my right, ready to pick me up as I fall, thankful for what I do have and not dwell on what I don't. I pick myself up, brush off the dust, my eyes are brighter, my heart isn't hurting so much and I realize I am blessed beyond measure and I am loved....that's all that matters. With that, I am then able to tackle things 'head-on', and realize so much of it is not up to me, so I will let it go, be faithful and smile. I did just that as I crawled out of bed yesterday morning and got myself, Jaden and Preslie ready for our drive down the mountain once again for her ENT appointment. We saw the same ENT that put Preslie's ear tubes in earlier this year, so I was confident that he would know what to do. Thankfully we left there with a plan, answers and a bit more peace. Her surgery for a tonsillectomy, adnoidectomy and bronchial scope, etc. is scheduled for Friday December 4th. He does like to wait for children to be 2 years of age before performing this, but also stated that sometimes waiting is just not the best option, as is the case with Miss P. His biggest concern is dehydration with little one's, so we'll stay the night and then wait and watch to see how she does. Of course he couldn't guarantee that this will solve all O2 problems and take us off the oxygen right away, but it's a good place to start as her tonsils are quite large. At this point I am not expecting a guarantee, but only a plan and to feel like I were getting closer to a solution.

With that said and done, we can now focus our energies on our other dilemmas in hopes for a solution there, look forward to the days and weeks ahead and what they might hold and most of all look forward to this time of year - thanksgiving. As I have so much to be Thankful for this year!

Sleep Study Results

2009-11-09T21:44:00.001-08:00

It began as a typical Monday, the alarm buzzing letting us know the day has begun, a new week ahead. I headed down stairs achy and still half asleep ready to tackle the day, mind racing with all the projects that needed to get done, all the worries that resurface when reality hits with each Monday morning running through my heart and my body fighting back as it just wanted a long bath and an even longer massage. My day was underway...Kyler was safely on the bus to school, Jaden was slipping nicely into his Monday routine of life without Kyler, Kurt was working, Preslie was fed and all smiles and I was surveying the house and the chores that needed to be completed. Apart from some issues with the computer and my usual Monday morning, not quite ready for the week, sluggish behavior, the day was underway without too many complications. Around 3, as my frustrations were building toward the computer and I was running out of solutions, the phone rang and I was hoping it was a much needed break from my daunting concentration. I noticed it was Primary Children's number and figured this was the call I had been waiting for. Sure enough, it was Preslie's pulmonologist with the results from her Sleep Study, finally, nearly 2 weeks later. He started the conversation with gratitude that the study was approved and we were able to get it done, which told me right from the start, they must have found something. 'Severe Obstructive Sleep Apnea' is what they found, which means something is obstructing her airway as she sleeps. He emphasized the 'severe' part and that they recommended 'intervention because of the severity'. I wasn't totally surprised as I had a feeling that she was suffering from some kind of apnea and it is extremely common in children with Down Syndrome. It was the following that began the stressful turn of events. His recommendation was to meet again with Preslie's ENT and see was his suggestion might be. A tonsillectomy and adnoidectomy are most definitely in her future, we are just not sure if it will be in her immediate future or wait until she's 2. If the later is the case, then Miss P will be on supplemental O2 for another YEAR. That broke my heart as I reflected back on March when we left the doctors office with her first cannula's in her nose and the O2 tank trailing behind us thinking, 'this is only temporary, we can handle this for just a few weeks. Here we are 8 months later, wondering when our baby will be 'cordless' once again and when will the new diagnoses stop. Will we ever get the answers we need? He also threw out the option of CPAP and possibly doing a scope on her upper airway to find out if its just the tonsils and such that are obstructing, or if there is even more going on. Thankfully CPAP doesn't look like a likely solution as with CPAP there is a higher tendency to aspirate and since she already has that problem, CPAP does seem like the best solution from his point of view. Not to mention the extreme opposition I am sure we would get from our princess! So in my flustered impatience, I called the ENT straight away and slipped into a cancellation tomorrow morning for some answers. I think at this point, I am beyond tired of waiting.

Only a short time later Kurt returned home early from work to inform me his work truck is no longer his and is now being used by the company down in Salt Lake, so as of tomorrow we no longer have a 2nd car and as of next Monday Kurt has no vehicle to take him his hour and 15 min drive to work each day. On a mission to find answers for Miss P and a 2nd vehicle so Kurt can continue working. Suddenly this Monday is no longer a typical day but one that is leaving my head spinning, my heart aching and my soul heavy and exhausted.

Several times tonight as I found myself staring out the window lost in my thoughts, I reminded myself that we always find a way, we always have. We always get through it, not matter how bleak the situation looks, or how exhausted we feel. And of course the simple truth that it could always be worse. Although my head knows these truths, it is my heart that enjoyed the few months of quiet normalcy this summer, it' s hard to slip back into the endless doctor's appointments, the continued worry about money and work and now a the lack of a vehicle. I am forced lately to moments of history, moments when the path was dark and the way was unclear. So as our untypical Monday comes to an end, my body is exhausted from the stress of the day, yet my mind is continually racing with worry of tomorrow keeping myself from the settled peace the proceeds sweet and pleasant dreams. Slow and steady wins the race as my dear friend reminds us all...one day at a time. Tomorrow, hopefully, will give us a plan, give us hope, give us something more then questions and quiet desperation.

enjoying a few hours as a cordless baby for family photos this past weekend!

Halloween 2009 and a look back

2009-11-02T14:29:00.000-08:00

October 2008 - things looked similar to what they look like now, this year. Mother nature rarely skips a beat and we usually know what to expect as the air turns cooler and the leaves that graced our earth with green beauty are now a different kind of beautiful and now gracing the earth around us leaving the trees bare, lonely and ready for the snow! Halloween last year we were not yet 2 months into our new journey with Preslie. Of those 7 weeks, 4 had been spent in hospitals and even though she was home for Halloween, she was only to be kept home and had medicine flowing through her veins via a PICC line every 7 hours round the clock. Halloween last year was not a family event that was celebrated together, showing off our newest addition and settling peacefully into bed after the festivities with sweets, ghots, gouls and costumes floating through our minds. For me, my mind was always racing, just trying to survive, just trying to get a grasp on the world around me and how it was so different now. That Halloween night we left Preslie home with Grandma and went trick or treating with our boys, our 2 boys whose world had been nothing but chaos since September 7th of that year. Our boys had seen their parents face their worse fears, struggles, emotions while trying to hold it all together all the while facing the reality that our lives were changed forever, our lives would be hard, different, but completely blessed! That night we graced the streets of our fellow neighbors and friends to give some normalcy back to our boys. We headed out as a family of 4, dressed to impress and forget our worries, cares, and tired minds for just a couple of hours. At that same time while Preslie was fighting a terrifying infection, our dear friend, Todd, was also continuing his 7 year battle with cancer and was missing his favorite holiday for a stem cell transplant within the all too familiar walls of the hospital. We spent the evening, not only collecting candy to settle our cravings, but missing Preslie and missing Todd, taking photos for the both of them.

12 months later, Halloween 2009, we left our house as a family of 5, Preslie in her first Halloween costume and the boys with their baby sister. We arrived at the usual spot, sun still shining, and quite warm for this time of year. It was perfect. We were greeted by many of our friends, and neighbors and got to enjoy Preslie's first taste of Halloween Utah style! We made our way up the street as transformers, Tinkerbell and Tigerlily, never once taking for granted each step we took, all FIVE of us. The boys got their candy, and the opportunity to see friends, dad got his fill of dinner and sugar, and I, mom, got my fill of photos as we made our way back down watching the sun tuck itself behind the hills allowing darkness to take over this Halloween night. We continued on our way to our final stop, our friends-with the doughnuts and the house where everyone passes through. There we visited for a while, enjoyed doughnuts and kept Preslie warm! Then to top off our night, our friend Todd and his family made their way into the home, a year later, continuing to win his battle against cancer. With smiles on our faces, we exchanged greetings and our joys to be here, to be out this Halloween night, this time all together as a family. The candy tasted a little sweeter that night for both our families, the pictures will be treasured a bit more, and the memories linger a bit longer for our first Halloween night as a family of 5!

Sleep Study

2009-10-29T15:02:00.000-07:00

The counter tops, walls and any other remotely flat surfaces throughout the house have been washed and washed again. Bed linens have been cleaned, toys disinfected and the smell of pinesol lingers throughout each room of the house. The boys are back to themselves, full of energy, full of life, now healthy, happy and back to their old routines. Thankfully my paranoia and cleaning paid off and Preslie's guardian angels were working overtime as Preslie has remained healthy and avoided the Flu and strep thus far.

During the H1N1 chaos, we got a call from the hospital to inform us that Preslie's insurance approved her sleep study. We were all ready for the following Sunday night when the boys got sick and there was simply no way I could get away nor did I know how all the germs would treat Preslie. So we cancelled and hadn't heard back until Monday afternoon when we got a call to reschedule. Either November sometime or that night were the options given. Since I have done enough waiting over the last year, the answer was simple. So I hung up the phone, got things in order- dinner made, dinner delivered to friends, bags packed, Preslie's bath given, and in the car headed down the mountain to Primary's. We checked in just before 8...Preslie was bathed, dressed in jammies and all smiles. I finished the packet of paperwork, and as they rolled the cart in filled with leads of every color, cords, glue and all manner of adhesive I knew the smiles would be long gone in no time.

At 8:20 the 2 nurses began putting on all the leads, about 9 on the head, 2 on the face, 3 on the chin and neck, several more on the chest, 2 bands around her stomach and chest, 2 monitors on her feet, and a nasal airflow sensor/cannula. For 40 min Preslie cried in hopeful desperation that I, mom, would be saving her from the endless lengths of colorful cords, tape, and glue. I finally was able to get her settled down as her sweet smiles for the 2 nurses turned into dirty looks and confusion. They left us for the night in our room, new bed, new sounds, new environment and all sorts of new cords. She was so exhausted but would fight sleep with every ounce of energy she could find for the next hour. Her eyes were heavy, closing for just a moment, then popping open with the reminder that she was not in her own bed and that things just did not feel right. I laid with her as long as I could then left her to adjust on her own, taking refuge in my own 'new bed' for the night. 10:30 she finally rested her head down, giving in to the night and the dreams that were calling for her. Needless to say it was a long night. She stirred a bit, waking a couple times then drifting back off to sleep. But the narrow, hard, pullout contraption that I was given for the night left me aching and restless and of course waking each time she moved, rolled or make a sound. Morning came quickly and they were back in our room, ready to free our Miss P from her tethered night. They took her blood to check levels there, then began unhooking, unsticking and un-attaching all the cords, glue and sensors. Miss P, as you can imagine, didn't quite get the peaceful nights rest she so desperately needed, but was completely relieved to be cordless for now. She was fast asleep again shortly after we found our way outside through the snow to our warm and familiar car. We survived the night and the newest of seemingly endless tests to, yes, you guessed it, wait again. We were told it could be as long as 2 weeks to get answers that have taken now 7 months to get. But we will do what we do best, wait. The following night she didn't fight at all as bedtime approached. She seemed to settle a bit easier that night into her own bed, with only 2 cords to deal with, she knew she was home. My little princess continually amazes me with how gracefully she adjusts to the endless tests, the endless doctors appointments and the new faces she's greeted with with each department of the hospital. She smiles beautifully with each change, draws people in with her eyes and no matter what is handed to her, she comes through those moments of doubt, fear and even tears with soft eyes, eyes of an angel!

all bathed, dressed and ready to head out for the drive to Primary's!

the 40 min is almost up and we got her to stop crying long enough for a photo!!!

Smiles are definitely gone for the night...who would want to smile with all this stuff on!?

Now that's my girl...the eyes and smile of an angel!

and rockin her new jammies from Heather!

The feelings of fall...

2009-10-15T22:01:00.000-07:00

Red, gold, yellow, and orange are now covering each mountainside. Kids are spending their days at school, studying, learning...the parks are a bit more quiet, the jackets are now out. The sun shows itself a bit later these days and the dark night is here far too early. There is this frosty chill in the air, the scent of snow is just around the corner and the word 'summer' and 'hot' are now words of the past! Fall is upon us, just as a season of colds, germs, quarantines, strict hospital rules and the very talked about flu! Our version of 'normal' certainly took on new characteristics a year ago. Normal for us, was a splinter in the hand, broken nose, stomach flu, and every bruise, scrape and cut you could think of. However normal carries a different tune now...oximeters, oncologists, cardiologist, infectious disease, cannula's, concentrators, therapy, aspirating, and now 'simply thick!' It was not only an adjustment to bring home a 'special needs' child, but then throughout the course of a long, cold winter, find out all the extra stuff that goes a long with the extra chromosome, and especially the stuff that necessarily doesn't! For 8 long months we dealt with hospitals, doctors, nurses, PICC lines, respiratory therapists, blood tests, waiting, fear, worrying, waiting some more, test results and every antibiotic known to man.

It seemed as though as the last of the snow melted this past spring, and life was growing again, our lives began again too. We were no longer stuck inside 24 hours a day, I could finally do my grocery shopping during normal hours and friends and family realized we actually do have a daughter named Preslie. Our lives began to feel the 'normal' kind of 'normal' again. We were able to go the movies, sit in the grass, play on the playgrounds, go out to dinner and although we were still working out the O2 kinks, the fear had subsided quite a bit and we could now focus on the milestones instead of the lab work, doctors appointments or upcoming tests.

Once again, it seems the chill of fall has brought with it the unnerving fears back to the Therklesen home. We were preparing to keep Miss P in again this winter: limited outings, no more church, lots of sanitizer and lots of precautions. Not even through October yet and the Tamiflu is in our fridge this night. This week has been filled with 'normal', busy mom activities..homework, baby showers, UDSF meetings...then topped off with, sore throats, high fevers, vomiting, more high fevers and today, a doctors visit. After a few tests, confirmed - one case of strep throat for Kyler and now one horrible case of H1N1 for Jaden. We've been fighting 103 fevers all day, trying to juggle 2 sick kids and one healthy, yet fragile child in a very small space. Tylenol, Ibuprofen, cold rags, and antiseptic cover the counters and dressers, and I feel myself being pulled back into a dark, long winter. The fears that seemed to sneak into every thought last winter have now found their way back in. The doctors ordered Tamiflu for Preslie as a precaution to do what they can to minimize this horrible illness if it does find it's way into her already tired and fragile body. Her lungs, already saturated from aspirating all those months are starting to heal and dry out...this is certainly the last thing she needs invading her precious body.

Once again, the prayers have changed to focus back to the health of my baby girl...sent back out to the guardian angels here to watch over her, that they will fight hard to keep this horrible flu out of her body and that she will be strong, she will fight and she will keep on smiling!

31 for 21 - day 7-our world, a bit more perfect!

2009-10-07T21:02:00.000-07:00

I think its obvious that I am not going to be able to post every single day this month. As the house quiets down each night I run through my head an appropriate post for the day that would adequately express my sentiments for this month and what it stands for, for me. I haven' t wanted to approach it casually, writing for writings sake. Therefore I have let the days pass without a blog until my heart is full and I have something worth sharing.

Lately,I have been noticing how we are received - usually Miss P and I (as we are pretty much 1 these days) when we are out and about in public. I am sure the canulas catch the eyes of many, in passing, and people wonder, why the tubes, what's going on, is she sick, oh how sad.....but then when the starring stretches beyond the 5 or 10 seconds, I think those fleeting curiosities run much deeper. I am not sure what goes through the minds of strangers as they pass our stroller slowly, eyes fixated on Preslie, no expression to lend any sort of clue as to where their mind is taking them, and then once they notice I am either staring back, or moving on, their eyes break free from her and they continue on with their day. It's hard to know what people think about her, about us, about who she is and why she is here. And frankly, I don't worry too much.

It's those moments, though, when I am introducing Miss P to a loved one, friend - old or new, family member, etc., that I like to record those moments in my mind forever. It is amazing to me, to watch people that have been a part of my life for many years meet Preslie for the first time...are in awe because they see what we see, what I wish the passing strangers would see - what I wish the parents that are debating ending their pregnancies would see. They are captivated, they are moved, they are changed. I remember wondering 'what is my father going to think of all of this' before I made that very difficult phone call the first morning after Preslie's arrival. We were still in complete shock, trying to make sense of it ourselves...I could only imagine what he would feel. And it's not something you necessarily discuss in family circles...'how would you feel if..." I simply had to trust that he would see in her the special light she was given to share with the world. And he did. He did not meet his grand-daughter until she was 3 months old. There was a great bond from the start...she smiled at him without reservation and when he had to part from her, you could see his heart breaking. That's when I first knew, she would help change the world.

I then had the opportunity to introduce her to one of my very best friends, Jacky, whom I have known since we were in grade school. She works with special needs children every day in Arizona, so I wasn't necessarily worried about how she would feel about my special needs daughter, I guess I was more curious what she would see since she is around children like Preslie quite often... and being a HUGE part of my life, I was hoping Jacky would see what I got to see everyday. Sure enough, Jacky fell in love with my daughter sincerely- immediately. Watching her with Preslie reminds me that P is not here for herself, she is here for the rest of us. In July, my old college roommate Emily, who is also one of my closest friends, (despite the fact she lives on the other side of the world:), came back to the US and Utah for a few days and we were able to spend an afternoon with her and introduce her to Miss P as well. I remember Emily holding her so tight...you could see the joy beaming from Em as she asked me all sorts of questions - 'how can I adopt a baby with down Syndrome', ' do you think I could make a stop on the way home and surprise Doug' and then simply stating 'I want one.' Preslie stared back and Emily with an equally penetrating stare...she knew Emily loved her. She knew her love was sincere, she knew Emily 'got it.' Watching that moment filled my heart with hope that we could change the hearts of many to not be so quick to give up on these wonderful spirits. I believe Emily returned home to Japan, changed. And finally, during my birthday weekend in Phoenix, my mom's best friend and her daughter (who happens to be my best friend)came to finally meet Preslie, as their plans to see her in October of 08 were changed with Preslies 2nd hospital stay. They both had been anxious for this meeting, so those moments had been long awaited for. Preslie was VERY tired by the end of the night, so her time with both Jody and Peggy was short, but lasting. I remember Peggy handing her back to me with tears in her eyes. She spoke softly - 'I could feel it Michelle. Her spirit is strong and amazing...I could feel it.' It's those moments that this world needs more of. It's those moments that make things all clear, this life and beyond. Its those moments, that make all the hard ones, all the scary ones more than worth it. I am more aware of Preslie's divine purpose here on this earth. It's not for her, it's not necessary for her salvation...it's necessary for ours, it's for my family and for my families' family. It's for our friends, our co-workers, our church members, even strangers. It's for friends from years ago and friends of tomorrow. It's for this world....to make it a little bit brighter, a little bit happier, a little bit more perfect.

'31 for 21' - Day 3

2009-10-03T20:46:00.000-07:00

I want people to become more aware of how siblings of angels with Down Syndrome are changed. We were blessed to have 2 wonderful boys. so different and so unique in their own way. Kyler, 7, is sweet, responsible, caring, aware, loving and golden. He certainly has a huge heart and loves to love. Jaden, 3, is full of life, laughter, and joy where ever he goes. He never does anything half way, whether it be in excitement, anger, fear, sadness or joy...it's 150% whatever it is. His world lights up at the simple things and he shares his light with the world. I know our boys were given to us first, to become the best big brothers to Miss P they could possibly be. They are kind to her, giving, loving and when I least expect it are there to make my life easier - helping their sister in any way they can. These sweet children not only change you as parents, they change their siblings. Kyler and Jaden are more understanding, more giving, more open to people that are different, more tolerant, more of everything good and pure. Our Preslie has changed everyone in this home!

Down Syndrome Awareness Month and '31 for 21'

2009-10-02T18:17:00.001-07:00

October 1st marks the first day for Down Syndrome Awareness month. Down Syndrome - Trisomy 21, it is our life in so many ways now. I guess there is no other way to look at it. My life is also still my boys, me and my husband, the whole Therklesen family, but being a parent of a child with Down Syndrome changes everything. I feel so blessed to be a part of this whole new world, and yet in the same breath feel quite lonely some days. No matter how you look at it, it makes me different, Preslie makes me different. My thoughts when I first wake up in the morning are different, my daily worries are different, my daily outtings are different, my prayers are different, my cares, concerns and worries are different, my perspective is different and my heart and soul are different. This month myself and fellow bloggers have been given a challenge - '31 for 21'. 31 posts to celebrate this great month for Trisomy 21. I hope I can live up to this challenge, to help people become more aware of things I am still learning and understanding each day.

I begin this month, though, with a bit of a heavy heart. It's been a long week with all the doctors, tests, changes in our lives once again, sleepless nights as I try to diagnose our little luv to avoid another doctor's office, and now our home filled with 'simply thick', no napping, and the feeling that this winter season, this cold and flu season is going to be a busy one. And then there was a 'facebook post' that completely broke my heart. A friend, another mother of a child with Down Syndrome posted the other night about a phone call she recently received from a Grandmother whose son and daughter-in-law chose abortion over having a child with DS after many miscarriages. Now, days after this post, my heart still breaks for that family. It breaks because they were not aware of the gift they were given. They were not aware of the joy their lives would hold if they would have just taken that leap of faith. And even if they couldn't, if they simply couldn't handle raising a special-needs child, they didn't understand enough to bring him/her into this life and give this gift to someone who would have cherished this child. It made me sick inside and filled with sadness to realize that there is still a great need for Down Syndrome Awareness. It seems as though so many people are not aware what a gift these children are...so many people are not aware how much they change you, how much they inspire you, how much they bless you. So many people aren't aware who these children are. I know that not everyone should have a child with Down Syndrome, but I believe each one of these children deserves to be born, to have their own journey, to be given a chance. This journey is NOT easy, some days it's really hard. But its the best kind of hard...the hard that makes each day worth living, makes each challenge worth fighting, makes each triumph that much sweeter.

I hope this month I can change one heart, help one person understand how special people with Down Syndrome are. Sure they are different, sure some things make take a little extra time, sure they struggle, sure their can be many health concerns and hurdles, but they are a version of perfection we are only so lucky to know, to learn from, and to love. They, people with that extra chromosome teach us everyday what it means to fight wars we simply couldn't handle, to try and try again, to walk the long, daunting path as their legs falter, yet they do it all with such grace, with such strength and courage.

People with Down Syndrome are simply better versions of the rest of us.

Buddy Walk and other updates...

2009-09-30T21:10:00.000-07:00

I could not think of a better and more appropriate way to celebrate our daughter's first year of life then to participate in our first UDSF Buddy Walk. Saturday, September 26th we joined the Utah County Buddy Walk as team 'Preslie's Passage' - her story, her journey, her path through her first year of this life. I wasn't sure how well Miss P would fair this day as she had been fighting a cold/sore throat for a couple days, but as always she outshined us all. Miss P and I were up with the sun, ready and headed down to Lehi (about an hours drive) to Wine's park to join in this years Buddy Walk. The sun, even though it has just made its first appearance for the day, was already warm, already bright, motivating and happy. It certainly added to the ambiance that was filling the park. My dear friend, Jenn joined Miss P and I that Saturday morning, us in our Buddy Walk attire, and Jen in her clown costume. She donated her time and talents as 'Soda Pop' the clown to paint faces and make balloon animals for all there that day. We were greeted by another dear friend, Lisa and Khloee, our neighbors in the Timp NICU for 3 weeks. What a gratifying feeling it is to see the 2 little girls, that were once so tiny, beginning their battles so long ago, now thriving, vibrant, sweet, strong one-year-olds. There were many faces painted that day, balloon animals made, friendships forged, and unforgettable memories made with friends, family, and even two very special nurses from Preslies 12 month journey. Not only were there many steps taken in our short walk around the park, but steps in this life-long journey as part of a team, a team of Preslie's Passage, of the UDSF, and as parents, family members and friends of angels with Down Syndrome. What a great morning to be surrounded by people just like us, people that have walked where we have, and people that are just a few steps behind us. The weather was perfect, the company was the best and the day was unforgettable. Thank you to everyone who took donated to Preslie's Passage and who took time out of this day, to celebrate Down Syndrome, to celebrate our Miss P!

not quite sure what it's all about, but enjoying the beautiful morning and 'people watching' from the conforts of her stroller!

P and I gathering our team, ready for our 'walk'

Two of our most favorite nurses and dear friends, always ready, willing and able to support and love us!

Me and my kiddos after the long, exhausting walk around the park! :)

Our team - people I love!

It's been a week and 1/2 since Preslies appointment with Pulmonology. It's amazing what can get done in a week and 1/2 and what can change in such a short time. Her chest x-ray didn't show anything alarming or unusual. Next step - overnight O2 study. We kept her off the O2 all night and recorded her stats during that time. Pulmonology received the info and concluded that it was in fact, abnormal - DUH! Her O2 sats were all over the place, but never above 92-93, as low as in the 70's, but danced more in the low 80's. And her heart rate fluctuated between 120-130, which on a medical chart, might not be so abnormal, however, when her O2 sats are good and stable, her sleeping heart-rate is between 90-100, so to me, this was a HUGE difference - by Preslie standards, this was abnormal. They are now ordering a full-blown sleep study on her and hoping that with the O2 study results Medicaid will pay for the sleep-study (we can only hope). Now we wait to see if they will and when it will be scheduled. In the meantime, they also ordered a swallow study, which was done today down at Primary Children's. When it was shared that Preslie went straight from Formal to solid foods, skipping baby foods because she choked on them, a swallow study was suggested. Preslie also seems to choke/cough on her water and milk from time to time. I am not really sure what I expected them to find, but I can say that I wasn't expecting so much to change so quickly. Preslie was sat in a chair with an x-ray machine right next to her taking continual photos of her mouth and throat as she ate various foods - baby food, flavored barium in a sippy cup and barium in her bottle. Thankfully we had withheld food from her for several hours before the test, so she was hungry and willing to eat everything placed in front of her mouth. Within a few moments the doctors shared with us what they were seeing on the TV screen. As she drinks from the bottle and especially the cup, she is, in fact, aspirating every few swallows. It was the barium she was aspirating so we can only imagine what is going on with something as thin as water. A few more variations of the liquids were made and pictures taken, then we were informed of some major changes that needed to be made. NO more sippy cups, at all. Everything she drinks will need to be taken by bottle and with the stage 1 nipple (0-3 month nipple) as well as every liquid she takes will now need to be thickened by 'simply thick' which we purchased from the hospital pharmacy. So we can plan on an added 1/2 hour to get her 6 oz bottle down, through that tiny hole. No popsicles, ice cream, jello (which we don't feed her anyway) until further notice, and we need to carry 'simply thick' with us everywhere. Hearing that she had pneumonia last March wasn't even remotely shocking to the doctor...it was more shocking that she only has had it once. So, how this all ties in to her O2 need, her heart, what to do next, what else needs to be done, is yet to be seen...but I will, once again, wait patiently to receive the doctor's call, remain thankful that bacterial pneumonia has avoided Preslie thus far and be grateful she is still drinking her milk and water even though it is the same consistency as my son's hair gel! And of course our little Princess was a trooper through it all, not flinching once at the yummy pink barium in her bottle or cup. Way to go sweet girl!

sitting in the xray room, waiting for the doctor and her food!

Prayers for a friend and a dear angel...

2009-09-24T21:49:00.000-07:00

Since our sweet baby girl was born over a year ago now, I have been very blessed to walk in new circles, talk with people like me, share notes and stories with people that truly understand how it feels to walk a path similar to mine. I have been blessed with an array of new friends, mostly through this amazing cyber world of blogging. Many I have never met and a few I have been fortunate enough to meet, embrace and spend many hours with. Most of these friends have children with Down Syndrome, and yet there are some that have faced a huge life-changing moment, felt pain deeper then they knew was possible, have mourned so deeply that it takes your breath away...those sweet people - we find solace in each other, hope in each other's stories and a common bond of change.
Even though I have grown to love many of these people I am calling on your prayers, your hope, your faith for one in particular this night. I met Lacey Rugg through a mutual friends blog and followed her story for months before we ever met. I would comment on her blog, and she would comment on mine. At times we would exchange emails and talk about a summer BBQ. It was finally this last July I finally had the pleasure of meeting the Rugg family. They only live a little over an hour away, which is next to nothing when you live where we do. This meeting, however, was unlike many others. It wasn't a simple encounter where names and stories are exchanged, where you talk the small talk, say you will 'do this again sometime' and go on your merry way to leave those things said as just that, things said. This was different on so many levels. Lacey and I had a very deep connection from the start, we felt very comfortable with one another and we knew at the end of the night when it was said that' we'll do it again sometime' it was said with complete sincerity. We also connected on another level, a deep, indescribable level that was spiritual and very emotional. That night I was able to meet their son with Down Syndrome, Jaxson Rugg, a 3 1/2 year old boy that has been to hell and back in his short life. I was not only able to meet this angel, but hold him, speak with him and connect with him. I knew the moment I had him in my arms that he was one of God's most amazing, strong and resilient spirits. He has overcome things we could never imagine or even want to endure. He had an accident some time ago, while in the hospital. This 'accident' has left him fighting to see each new dawn. He's been experiencing high levels of swelling in his chest and face, a lot of fluid in his lungs, clots throughout his circulatory system...all on top of the many other issues he deals with each day. Today he was admitted to Primary Children's for a cath lab procedure tomorrow. Today he had some ENT procedures done to check his airway and bronchial areas. It appears as though his tongue is swollen so much it is almost completely blocking his airway so the tentative plan is to trach him. Another hole put into this already fragile child. Another tube to deal with each day, another area that infection can enter this already compromised body, another procedure to cause fear in their already uneasy hearts.
I am sure tonight Lacey and Rays hearts are full - full of worry, full of fear, full of contemplation, full of so many questions, so many decisions to be made, so many unknowns ahead. I know my heart aches tonight for them, for the decisions that lay in their hands and for Jax - for his strong spirit and tired body. I ache for the tired mind Lacey is fighting, and for the dreams and desires of Rays soul for his sweet Jax. I pray that they find peace and solace in their hearts. I pray that clarity will fill their minds, will find a place amid the dark moments, amid the unanswered questions, amid the foggy and daunting thoughts. I pray that Jax will pull through this, that the Rugg family - all their boys will pull through this, be made stronger, be made whole - that the spirit will find them and bring to them peace and a bright hope. Please join me in these prayers. Please ask that the comforting angels will walk the halls with Lacey and Ray tonight and will rest next to Jax as a big day lay ahead. I love them very much, so please, please join me.

Answered Prayers...

2009-09-21T18:27:00.000-07:00

Friday, September 18th was our first visit to Pulmonology at Primary Childrens, a new doctor in a new department of the hospital we had yet to visit. But Friday wasn't just another visit to the hospital that holds so many memories and feelings, or a visit to a new doctor we didn't know yet, new tests, new labs, new faces, it was a day my prayers were answered.

First, though, I will update on what went on with our visit with Dr. U. of Pulmonolgy. Lacey, my dear friend, pretty much called it. It's unlikely that it is her lungs and not her heart, however, to do his part as a pulmonologist, he did the physical exam and then proceeded to order several tests to cover his end. First, an overnight oxygen study. Not exactly a sleep study, ONLY because Medicaid rarely pays for sleep studies, so oxygen study first. Bascially her oxygen and heart rate will be recorded tonight, as she sleeps WITH OUT oxygen. They want me to set it so I wont hear the alarms, however I know I will be sleeping with one eye opened imagining alarms going off each time she de-sats. Should be fun. If that comes back abnormal, then they can go to Medicaid and ask if they will pay for a sleep study. He said, even then, chances are slim. We'll see! We also had a chest x-ray done, and have a swallow study scheduled for next Wednesday. Sharing her history with him, the important and not so important has him questioning her airway, or more importantly the chance of her aspirating now or in the future. Apparently there may be something to the fact that she hates baby food and chokes on it. So that's what we have to look forward to on his end. In addition to the x-ray we also had 12 month labs drawn...CBC, thyroid, etc. I have not received those results yet.

It was a simple perscription for an xray that completely blew me away and left me speechless last Friday. Let me preface by saying that originally her appointment was supposed to be a couple of weeks from now, but because of my impatience and a nagging feeling I was receiving last Thursday I called Primary's to ask if we could be put on a 'cancelled appointment' list when I was told something had just opened up the next day (Friday). So there we were, Friday, September 18th in a very large childrens hospital in a relatively large city at about 10:30 on a beautiful morning. We had just seen Dr. U and the nurse walked us to radiology and got us set up with the xray and upcoming swallow study then left us to stand in line to check in. The waiting room in radiology was busy as it always is. There were about 4 people in line infront of us, one directly infront of us was a youngy boy holding the place for his mother who was visiting with a friend in the hall. When she returned to the line, she immediately commented on Preslie and asked if she had Down Syndrome. When I replied yes, with a smile as I usually do, she followed by telling me that she, too, has a son with Down Syndrome that is 8 years old. Immediately a connection was made, as it usually is when you find someone like you, someone walking our steps, someone in our world. After I checked in, I sat in the open seat next to her in hopes to continue our converstation. She shared his photo with me and we exchanged stories, medical history, laughter, etc. - so far a pretty normal conversation. She then mentioned that it was great to have a son with Down Syndrome because she also had a 52 year old uncle with Down Syndrome. Usually my response would be a nod, a smile and a comment how that was wonderful that there are two in her family, but that was not my response this day, during this conversation. Instead, I then asked if her uncle was local, for really no apparent reason (so I thought). She replied with 'well sort of, he's in Provo....'

My heart sunk, I shook my head, my eyes opened wide and I asked, 'who is your uncle?' You, my dear friends, might remember a post I did not so long ago called 'Preparing'. In this post I traveled back nearly 9 years ago to when I worked at a Sheltered workshop called CUE and met a man with Down Syndrome named J. He was very dear to me then, my buddy, my angel. I had thought of him from time to time after that job ended and I ventured into new places, experiences, new journey's, new parts of my life...it was only after Preslie was born that J's face would come to mind almost each day...when I would wonder if he was still alive, as he was in his 50's now, when I would wonder if he was OK, if he was still happy, and where his life had taken him. I had hoped and prayed that I could find him and had even looked up an old co-worker and sent out and email that I am still not sure even reached her, or heard back from.

Her reply, was 'My uncle is J. Jolley....do you know him?' I shook my head yes, trying to compose myself as tears were streaming down my face in that radiology waiting room. How could this be? How is it that on this very day, at this very moment, his neice decided to talk to me? I then proceeded to tell her my history with this beautiful person, the angel that introduced me into the world I am now blessed to be a part of. She smiled in delight and shook her head in disbelief. Her young son sitting next to her, starred in awe that I knew his great-uncle. He is STILL alive and the same sweet man I new so long ago. Our conversation was cut short as we both were being called back for our proceedures, but information was exchanged, I was even given J's dad's number as his mom passed away shortly after my job at CUE was finished. She embraced me before we parted and I walked away with a warming in my heart, knowing that God does answer prayers, He does listen, He knows our hearts and what is truly wanted and important to us. He loved me enough to bring J back into my life in such a miraclous string of events. Only He can move mountains to bring forth His work and to change lives, change circumstances, change appointments and answer silent prayers of the heart. What a blessing it is to know that J. is still here, sharing his love, sharing the beauty inside of him with so many and that 8 years later, his great-nephew was also born with Down Syndrome...someone like him, someone he knew before this crazy life began. In a way, it has all come full circle, and because of my dear Heavenly Father, I have the peace in my heart to know J is still an angel among men!

Preslie Tid-Bits...

2009-09-17T22:30:00.000-07:00

I am happy and anxious this night to announce a few little Preslie 'tid-bits'. Although she's been 98% there for a few weeks now, I am extremely elated to say that at 12 months old we can safely say that Miss P is finally sitting on her own. As a 'mom precaution' I still place a very cushioned bean bag behind to her to catch her fall if she looses her balance, or suddenly decides she doesn't want to sit any longer and fall back without hesitation; however, the incidences of that happening are definitely less frequent. She does not end up in sitting position by herself or her own free will, it is still a position picked out by mom or dad at random times throughout the day. And, even though she cannot deliberately change positions from sitting to laying on her back or stomach, she seems to enjoy the small amount of added freedom sitting on the floor gives as opposed to the limited range her bumbo gives her ! We are very proud!

She can now experience, more fully, the fun floor parties with grandma and her brothers!

I was able to kick off the upcoming month of 'check-ups' by moving her Pulmonology date up from October 8th to tomorrow morning. It's good to know my impatience does pay off from time to time. Apparently it's not as 'cut and dry' as the theory that Preslie's ASD (Atrial Septal Defect) in her heart in combination with our home being at 7000 feet above sea level that is causing her continual Oxygen need during sleep. Our Cardiologist is requiring that we meet with Pulmonology first to rule out any other related issues. So in addition to a ton of blood work (CBC w/manual Diff, TsH, T4, and BMP), we will be making a lengthy stop at Pulmonology tomorrow morning at primary's as this is one department we have yet to meet. Please take a moment in your morning prayers that someone can figure out a permanent solution to her O's, the stickies and the large machine that now sings me to sleep each night.

And finally, our little Miss hasn't been napping well, nor has she been completely herself these last couple of days. The reason is yet to be determined as to why normal naps in her crib seem so horrible lately, as she definitely is in great need of them. After attempting a morning nap and then daddy holding her another 30 min, and then being left alone with some music in the living room, our little Miss seems to prefer this then her comfy crib!

Our sweet Miss P - always keeps us on our toes!

Cake, gifts,sunshine...celebration

2009-09-15T08:24:00.000-07:00

The sunset over Heber Valley seemed a bit different Saturday night. The sun seemed to linger just a moment longer as if to look down on the beauty the valley holds, to lend it's warmth on all those gathered for the occasion of that special day. Its warmth seemed to wrap around all of those in one back yard, there for the same purpose, to kiss the sweet, innocent children that have all celebrated the day we were able to celebrate on Saturday. This evening, a perfect evening, brought people together from many different walks of life. Some have walked in similar shoes as ours, parents to a special needs child. Many had said the same prayers that we did, that our baby would be around just one more day. Many have walked the journey of this last year with us, either as our neighbors or as new found friends. And there were many that probably couldn't quite understand the significance of this first birthday, the sigh of relief that was shared on 9.7.09, or the sense of such accomplishment to finish only one year. Regardless of the ties that ran through us all, we were all there for one purpose, to celebrate a first year...a first year of so many things. It was indeed Preslie's first birthday, but so many firsts had been accomplished as well. She had overcome so much in only 12 months. Her first surgery, first sever infection, first PICC line, first MRI, first ECHO, first Sedation, first smile, first laugh, first trip to Disney Land, her first friends. And to us, her parents, it wasn't just a celebration of a first birthday, but a sense of accomplishment through many of our firsts as well as we fought by the side of our little girl, our warrior, our light. It was a moment to exhale, to relax, to not think about tomorrow, or worry about getting through the 2nd year, or wonder what the days ahead would hold, but a day to let the rest go, to let all the worry, concern and fear of the first year linger behind as we began a new chapter, a new year. It was a day to enjoy the sun, the clean air, the most perfect of friends and to smile. It was a day to count our many blessings, and to share all this year stood for, all our daughter stands for with all our loved ones and friends. It was a day of bliss...a day of laughter, of good food, perfect weather and bonds that will never be broken. It was a day to celebrate a sweet little girl who found a family a bit lost and unsure and restored faith, courage and strength. A day to celebrate a beacon of light and a pillar of hope, all found in her, our Preslie. 70 of our closest friends and family traveled up the mountain to share in this perfect celebration, this marvelous triumph of so much. Although Miss 'P' had no idea this was all for her, and even at times was so overwhelmed from all the faces and smiles, I am sure her spirit felt the joy and warmth we all felt and shared that day. A wonderful dinner was enjoyed by all, laughter from all the children, circled the rest of us as they played in the Gods beautiful country. Happy Birthday was sung to a tired and special little girl and birthday cake, another perk enjoyed by all this day. The sun finally fell behind the mountains and the light of the day dimmed, and gave way to the chill of the night...even then, friends and family still lingered to watch Preslie's eyes widen at all her new toys - the lights and sounds, to watch my excitement as we opened the new bows and pretty dresses - the wonderful joys of having a girl and to spend just that extra moment with one of God's sweet angels, one of His most perfect and valiant spirits. Our hearts are grateful for all those that joined us that night, for everyone's love and support over this last year. Our hearts were also hopeful....that next time, those that couldn't join us (you know who you are) would be there to celebrate the next one!

The beautiful setting of our celebration!

One of our first guests..Justin and his family...our eternal friends!

Some more of our party guests and good friends!

Some of our closest friends, the Ruggs and Quick family!

WE even had some of Preslie's 'medical staff'...our home health care nurse Kristen...

...and Preslie's two NICU nurses, Paula and Tamara (and Tamara's daughter)...Thank you 3 for taking such good care of our little girl!

Even as party host, I got some Jax time! My favorite time with my buddy!

My big Birthday Project - THE CAKE!!!

Making her first birthday wish!

opening gifts (Thanks Ray for the GREAT photos!!!)

Even after total 'over-stimulation', a verylong day, lots of people and no afternoon nap, she still is my happy girl!

the 'morning after'! Preslie's hair says it all!

playin in her birthday balloons!

Happy First Birthday baby!

2009-09-07T22:27:00.000-07:00

One year ago today, September 7, 2008 at this very moment I had given birth to a beautiful little girl - 7 lbs 7 oz 20inches long and I was in my hospital room waiting anxiously to meet and hold my baby girl who had all to quickly been whisked away from the OR. We had yet to name her and I did not know at this point that our future would be filled with so many unfamiliar unknowns, that we would work with a cardiologist, infectious disease, physical and occupational therapists, geneticist, Orthopedics, oncology...we did not know that there would be moments of incredible fear, moments of darkness where faith was the only thing left to hold onto, nor did we know that our daughter had Down Syndrome.

All I knew at that moment was that our first little girl was awaiting a quick visit from the on-call pediatrician because of her oxygen needs and soon I would get to hold my newest bundle of joy and my life would go on being 'normal', the 'normal' I had always been used to. It wouldn't be for another 3 hours that my life would be turned upside down, that my heart would sink, my mind would spin, the clocks would stop, the air would feel thick, my hands would shake a the most sincere prayer that what just happened was all a dream would be sent repeatedly into the night.

However today I don't want to focus on that moment, the moment that my most deepest fears were realized, the moment that my world began to spin uncontrollably in a direction that I was not prepared for. I don't want to focus on the few days that followed, when I would wake up from a few moments sleep, look around and pray that what I had been feeling was all a bad dream and that my 'normalcy' would be back. Unfortunately I didn't want this new reality at first. Unfortunately there were too many moments filled with tears.

I want to focus on this beautiful little angel who in only 12 short months has helped me, her mother, find herself. That day that Preslie was born was the day I began a journey to find myself, to find the person I always wanted to be, but was so far from.

Prior to Preslie's birth I had a great life...a husband who loved me and was/is very good to me, 2 great boys, parents who always took great care of me....I had a home, food on the table each night, and I knew I was a daughter of God. However, I was also a girl who was for far too long a product of her environment...a product of a once unhealthy environment and that's where it ended. The cup was always half-empty, the clouds were certain to find me, I would never be whole and I would always feel lost and insecure. I doubted way too much, feared most everything and ached to really know who I was. I honestly was an 'almost' girl...I almost finished college, I almost followed my dreams, I almost had the life I always dreamed, I almost felt like I could do anything and make a difference. I couldn't quite get a grasp on things. I questioned everything, worried about too much and made a big deal of even the smallest and insignificant of moments. I didn't truly understand how much I was loved, by not only the people around me, but the one who created me, the one I often turned to for solace, but never really knew if he was truly listening.

It was the day I met my daughter, the day I began my journey to a place that I belonged. She was given to me for a purpose, given to our family for a divine reason. She has made whole which wasn't, she has taken away the clouds and filled my life with so much sunshine and warmth. She erased all the 'almosts' and filled my life with purpose and meaning. She gives hope where there is only despair, faith when fear is all you can see, strength when weakness takes over and courage when you just can't fight any longer.

Some may say - how can she do all of that, how can one little girl make such a difference. I am not sure I can even fully explain with words how it has all happened. It is through her, that I feel God's love. Through her I feel the perfection, grace, kindness, and hope - all that God is. Her vessel may not be whole or perfect. The vessel in which she was given for this journey has many imperfections...a hole in her heart, a blood disorder, weak muscles, and even a slower brain...but her spirit is perfect, her mind is strong. All of Gods love, forgiveness, strength, purity and happiness was poured into her. And she was given to me to share all of that each day and remind me of my individual worth. Sure I still have along way to go, I still have many things I need to work on and improve, but I am a different woman today then I was just 12 months ago. At the end of the day and the end of our different experiences and adventures, most of which we spend so much time worrying over, never really does matter. My perspective has changed, my perception had changed, my mind has changed, my heart has changed, my soul has changed. I love and hope in ways I never thought possible. And although I have my moments where fear creeps in and I begin to doubt, once I hold onto that little girl and allow her eyes to speak to me and her smile to embrace me, I am once again at peace.

My Preslie has no idea of her perfection or divine worth. She has no idea the profound impact she has had on so many in only 12 short months. She has no idea that she saved her mother in so many ways. This moment is to honor her, my daughter, a perfect spirit entrusted to me forever. Preslie you are a miracle in so many ways, you are hope, joy and strength in it's purest form. You are an angel among us, a beacon of light to lend your light when the way is dark, to share your strength when there is none, you are a teacher, you are perfection. I hope with you for many more days, weeks, months and years to come. I hope for moments when I am made even stronger, moments in the sun with you, moments where I see clearly. I hope that one day you know in your heart and mind how truly special and amazing you are and I hope that each day with my and with your family that you feel loved beyond measure, that you know how cherished you are and you know that you are one of God's most special and perfect creations. I hope that we can continue to walk side-by-side together learning from each other and sharing our experiences with our old friends, new friends, and friends we have yet to meet. Happy Birthday my beautiful girl, my gift, my angel. May your dreams come true, may your day be perfect and may your soul know you are a choice daughter of God. Happy First Birthday baby!

I will forever be grateful to my Father in Heaven for loving me so much, for loving me enough to give me exactly what I needed!

You, Miss 'P' make me a better person each and every day!

A blessed day, a day of new beginnings, a birthday!

2009-09-07T07:48:00.000-07:00

As I begin this beautiful day, a day of celebration, joy, happiness and reflecting, I realize it's going to be more difficult than I thought putting into words all that I am feeling. I am sure this will be only ONE of the many posts I will put out today, posts to share with all that has walked this journey with us, with our Preslie, our angel. 12 months ago, September 7th, 2008 at 10:03 PM Preslie Ellen Therklesen joined our family and opened up our hearts, minds and lives to a completely new reality, a beautiful journey and a day that I found myself...here's the last year we've been blessed with... In the hospital at Timp a few days old! Our journey begins!

About 1 month old - back in the hospital (Primary Childrens) with a bad leg infection
Our sweet girl, finally home with her PICC line for 6 weeks!!!
November - a little over 2 months old in her blessing dress! Truly an angel! 3 months old - her first Christmas!
January 2009 a new year - 4 months old

5 months old and already a great sense of style!

Six months old - right before her horrible RSV and Pnemonia

7 months and her first Easter!

8 months old - finally able to leave the home with her so Cali is where we escaped to!

9 months old - our beautiful princess!

July - 10 months old and her first trip to Phoenix

11 months old...almost a year!

12 months full of learning and joy, obsticles and overcoming, fears and triumphs, faith, prayers, laughter, awe and wonder...ALL from one little girl!

Preparing:

2009-08-31T08:06:00.000-07:00

fix: make ready or suitable or equip in advance for a particular purpose or for some use, event, etc; educate for a future role or function.

As we are approaching Preslie's first birthday and I am overwhelmed with all sorts of emotions, I often reflect back to who I was years ago, even just a year ago and play out the events in my life that have brought me, us to today and to who I am today. Approximately a decade ago I went to a temp agency and they found me a job at a little place called Central Utah Enterprises. They rent out linens and such for events and parties...that makes them money to do what they really do. But what the really do has nothing to do with linens or parties or even making money.I thought it was just a job, just something to pay the bills, get me through college and keep me stable on my own.

However, they are so much more then someplace to rent linens, and it was so much more then just a job...Central Utah Enterprises is a 'sheltered workshop' for people with disabilities connected with the Provo School District. I was offered a permanent full-time job there as a secretary for the business side of things. I was only able to work part-time as college took up the first part of the day, but I spent each afternoon there, doing books, reports, filing, data entry...I had a great 'job.' As time went on and I felt more comfortable there in my 'role' as secretary, I was able to learn more about the program and as a result, meet those individuals that were part of the program, men and women, girls and boys with all sorts of 'special needs'. I hadn't really been around people, children, adults with disabilities or special needs until this time in my life.

There was one that caught my attention, one that stole my heart, one that I was intended to meet. A sweet man named J. Jolley, 42 at the time and had Down Syndrome. However he reminded me of a sweet little boy...so young at heart, so innocent, still learning the simplistic things of life that most children have since passed interest in at age 10...he was still there...still giggled like a little boy, still had real fears of thunder and the dark and still loved cartoons. J. Jolley would come find me each afternoon, sit in my office and tell me stories of the day, share with me little narratives of what home was like, who is mom and dad was and the lay his head on my shoulder and share with me a sweet grin. I looked forward to seeing all those sweet people each day. They touched my heart in ways I never imagined. J. would often get in trouble for coming to me when his day wasn't going right, or running into my office afraid during a thunderstorm, or disappearing from his work station just to say 'hi'. But I never thought twice about welcoming him into my office, listening to his stories, or letting him lay his head on my shoulder until the thunder passed. He was my buddy, he was an angel. One afternoon I drove to his home and met his parents and visited with them for quite some time. J. Jolley was still their little boy. I took J. with me for the afternoon. We went and picked up a pizza and a movie - animated, of course, and went back to my aparment and endulged in cheese, pepperoni, and cartoons with my sweet roommates. His tummy full, he laid his head on my shoulder once again and fell asleep to the sound of 'Disney' playing in the background.

That 'unfamiliar' world of 'special needs' and extra chromosomes was no longer unfamiliar to me. I still didn't know all the details about Down Syndrome and what medical needs and lifetime needs comes with it, but I knew that it wasn't strange to me or it didn't make me feel uncomfortable because I didn't understand. I understood that those people in that workshop were different...some had an extra chromosome, some had a wheelchair as a constant companion, some had other disabilities or special needs, but they ALL were beautiful. They ALL came to that workshop each day trying to learn something new, trying to make the best of each day they were given...they had feelings, fears, dreams, hopes and loves just the same. They were simply angels among us. Months later, circumstances in my life took me away from that job, and as that door closed behind me, other windows and doors opened up that ultimately brought me here, to this place, at this time, with Kurt by my side and our 3 children in our family. My mind would occassionally wonder back to that time at CUE and my experiences there with that 'job' and the sweet people I grew to love. I looked at it as a great expereince, a great moment of learning, and of opening my heart. It wasn't until the shock sunk in, until some of my fears subsided and my emotions calmed that I was able to look back on the events that led to Preslie's birth. Now, nearly a decade later I know it was not just a 'job' not just a great expereince, but a moment of learning, a moment of preparation for years later on a Sunday evening September 7th, 2008 when the doctor would enter my room at 2:30 am and tell me that my daughter was born with Down Syndrome. I wasn't being left alone in my new and unknown journey. I wasn't left to figure it all out on my own without any tools, knowledge or strength. I had begun preparation years earlier without even knowing or realizing. I was being shown a world I would one day be a part of for the rest of my life. I would one day know beyond a shadow of a doubt that my Father in Heaven loves me enough not only to give me a piece of perfection, but years prior introduce me into a world I would grow to love!

this is my world now...my reality, and I LOVE it!

August 22, 2008

2009-08-24T21:04:00.000-07:00

A year ago, 8.22.08 a journey began. A year ago I was in Salt Lake with my mother very pregnant, very large, very uncomfortable and getting 16 inches cut off my hair. I was ready for a change...little did i know, so much more then my hair would be changing. As we are closing in on my sweet daughter's 1st birthday I have spent many days and moments lately reflecting on 12 months ago, so much time has gone, yet feels like yesterday. I am reflecting on those moments preceding her birth, preceding this new and unknown journey. After the haircut, I began to drive my mother and I back up the long steep road of Parley's Canyon, noticing that my stomach was beginning to tighten and become quite painful about every 5 min. I dropped my mother off at her car in Park City, and noticed it was every 3 min I was in terrible pain. She followed close as she could tell something was happening a bit too early and by the time I pulled into Heber, I decided to drive myself to the local hospital just to check and see if I was indeed in labor several weeks early. Later that night I was taken by ambulance down Provo Canyon to Timpanogos Hospital, there I spent the night while allowing many horrid drugs to be pumped through my veins to stop my labor. Saturday, the big day of my baby shower, I was sent home and ordered on bed rest for the remainder of my pregnancy....wondering why our little girl was so anxious to get here. My baby shower was supposed to take place in the SL valley, but instead the shower came to me as I began my lazy stint in bed. I spent the night with family, catering to my every whim, opening beautiful gifts, pink, brown and frilly and enjoying a delicious ice cream cake ordered especially for me by my sweet mother. For the next 2 weeks I would go crazy spending my days in a vertical position, having women come in my house throughout the day to help clean, cook meals, potty train Jaden, and keep my crazy mind company. All I knew was I couldn't wait to see her and hoped she wouldn't get here too early because I couldn't imagine a newborn baby with tubes or on monitors...I couldn't handle it. Oh our hearts and minds never truly know what they can handle until they have to...until they are faced with the unthinkable and the sun rises and sets each day and you are forced to keep it together and move forward, one moment at a time. My true limits would soon be tested, and I had no idea!
As I count down the days to my angel's 1st birthday I am overcome with so many raw and indescribable emotions. And as I celebrate the day my daughter was born as well as the day I was truly born, I choose to celebrate her along with all the other amazing, perfect, wonderful children with Down Syndrome that I have grown to love and even those I have yet to meet. I celebrate by walking...I celebrate by starting a campaign to raise money with this walk, to raise money to help all those families out there walking a similar journey to mine. I celebrate by raising my voice, sharing my daughter's story, sharing my daughter's angelic eyes and infectious smile...I celebrate because after all we've been through, that's the only thing I desire to do...celebrate this wonderful world I was introduced to almost 12 months ago. Celebrate these children that inspire me daily. Celebrate my new family...a family of so many different people and families spread all over this country that I have grown to love so much. Celebrate my journey with perfection, my journey with the one thing I would have never asked for myself, but know now, it was the best thing for me, for my family. I celebrate Preslie Ellen Therklesen, the love of my life, my star, my hope, my angel...I celebrate her and all the good, pure souls that are like her. Help me celebrate this beautiful thing called Down Syndrome. Sure with those 2 words comes fear, unknown moments, chapters and experiences...cancer, seizures, tears, hospitals, doctors, therapy, oxygen, medications, prayers, pleading, anxiety, heart surgeries, and so many more unexpected and terrifying moments...but also those 2 words hold such hope, such courage, faith, strength, unconditional love, new perspectives, triumphant moments, appreciation for all the small things, love, light, miracles and the most perfect moments you can ever hope for.

If you're close by, walk with me on September 26th, or simply support the UDSF, support Preslie's Passage:

Passage: A journey...A movement from one place to another, as by going by, through, over, or across; transit or migration

Through this, we are hoping to share her journey, her story as she has changed so much and as she has changed us....created for us, a beautiful journey, a beautiful moment of change.

http://www.firstgiving.com/preslietherklesen

This is our chance to give back, to help in any way we can!

our new journey began...a life in the amazing world of Down Syndrome!

So much to walk for, so much to be thankful for

It's those quiet moments at night when I head off to bed and look at my princess one last time snuggled up on her tummy, putting cannula's back in again and realizing I am blessed beyond measure!

Family...

2009-08-20T08:15:00.000-07:00

Families are the compass that guide us. They are the inspiration to reach great heights, and our comfort when we occasionally falter.-- Brad Henry

Earlier this week my brother was up here helping us with some insurance (business issues). It was his first trip from an hour away in almost a year. And it was a trip regarding business. We were talking about the prior weeks experiences and happenings before business began. It wasn't just a normal 'summer' week with the 5 of us. For a week, we had a special house guest - Kurt's new step-sister from New Zealand. Kurt's mother had married her 'prince' a week before she passed away - his name is Angus and his daughter is Rachel. Rachel decided some months ago that she wanted to meet the rest of her new family as we weren't able to return with Kurt to New Zealand during his mother's wedding and passing. So she booked a ticket, sent us an email and hopped on a plane to meet new members of her family. It was a very foreign concept to my brother that someone that barely knew us would spend the time and money to come over to stay with people she barely knew, to make a sacrifice to travel thousands of miles to see people that earned the title of 'family' from a marriage certificate that was signed over a year ago. It was foreign to him that a family actually operates like that. We are not a very close-nit family as I have mentioned in previous posts. I am much closer with my other sibling, but I believe there is always room to become closer, to become that 'compass', the lighthouse directing, leading and giving comfort when needed. After several hours of visiting with my brother and completing our business I was sad that it seemed so odd to him that a family is that close, that a family sacrifice for one another, that a family acts like they care.

Then I reflected on the blessings of our family, the blessings that have been given to Kurt during this time in his life. kurt was part of a very special 'trio' growing up - his mother, his sister Sascha and himself. His father left when Kurt was very young and despite Kurt's willing heart and efforts, his father still has nothing to do with him or us. He has always been close to his mother and sister, but after his mother passed, I think deep down he longed for a bigger family, he longed for a father, or even a 'father-figure'. A week before mum passed, she gave Kurt what he had always hoped for...a larger family. He now has a step-father and 2 step-sisters as well as several nieces and nephews. They are not around the corner or in a town close by, but they are there, they are present in our lives, they are family.

Rachel arrived on the 11th. Kurt was in Oklahoma working, so the kids and I went to the airport to pick up our new sister-in-law and aunt. It was great to bring her home with us and watch her interact with my children as though she has known them forever. As she held Preslie and read bedtime stories to the boys you could sense a deep love for the kids, a sincere love for our family. Her daughter had sent sweet notes to each one of us, introducing herself as their newest cousin and our newest niece. Kurt came home 2 days after Rachel arrived and together, we introduced her into our lives here in Utah and our family. It was a wonderful week as we played games, shopped, cooked, explored, took afternoon drives and connected. She left Monday and as it was sad to see her go, we knew we would see her again, and the rest of her family. God works in mysterious ways, laying before us paths that will not only help strengthen us, or test us, but things that will allow peace, things that we had always hoped for. At times we seem to be getting things we certainly didn't want, like the death of a loved one, or illness and struggle of a child, but often times from those things comes great blessings, great 'new beginnings', amazing possibilities.

smiling at her new auntie

Jaden fought the stairs...and the stairs won

2009-08-12T07:41:00.000-07:00

Monday night...evening just about over, night approaching. The children had all been fed, toys cleaned up and had just finished getting their baths. Kyler was upstairs getting dressed, Jaden was on his way down with clothes, and I was on my way to the couch with a freshly cleaned little baby. As I sat Preslie down on the couch to begin the usual night time routine, I heard a loud thud, followed by several other load thus and then accompanied by screams of anguish. As I look up at the stair case I can see my sweet Jaden tumbling down a very hard, very steep set of stairs. It was as though he was falling in slow motion, head - feet - head - feet, landing very solidly - like a block on concrete, on his back across the first few steps. It wasn't the usual slip, tumble or slide, accompanied by a temporary moment of fear and tattered emotions, then off to the usual crazies that Jaden does so well. No, this was a tumble that consisted of his head hitting every few steps, following his feet. My heart sunk, then began racing as I called for Kyler to run down stairs, and watch Miss P still undressed from her bath laying on the couch, confused and beginning to fill with fear as she hears the wailing and screaming from all directions. Kyler races to Preslie while I race to Jaden, I pick him up to hold him tight as only a mother does, then notice his face all bloody. I laid him down on his bean bag to quickly survey the situation, check over the rest of his limbs, grab a cloth to help mop up some of the blood gushing from his terribly swollen nose and breathe deep as chaos #312 has just begun. I am alone with the kids this night, so I ring my mother who is next door and she races over to help me tend to all 3 at once. The kids all finally get dressed in their jammies and we notice Jaden's pupils are all different sizes, so I throw on shoes, grab insurance cards and off to the ER I go with my little Jaden. I call Kurt on the way, who happens to be working out of state, not even close enough to have the comfort that he'll be coming home any time soon, to inform him of the latest acrobatic stunt our little Jaden has just mastered. Jaden, you see, never does anything half way. Whether it be laughing, talking, singing, dancing, crying, arguing, or crying, he puts his heart and soul into everything!

Thankfully there was no serious damage done, and although I do not completely trust our small town hospital, we left a while later, head injury info in hand, pain meds ready to go and a long night ahead of us. I put Jaden in bed with me that night to check on him every couple hours as the doctor ordered...but he was restless enough that I didn't worry about him not waking. He's still a bit sore, nose still might be broken as one side is still puffy, so the jury is out on that one.

A deep breathe every few hours, insurance cards on hand and a large prayer to start the day...we get through it!

If we have no peace, it is because we have forgotten that we belong to each other. -mother Teresa

2009-08-10T08:52:00.000-07:00

“You can’t stop the waves, but you can learn to surf.”

I had to borrow this quote from a new and wonderful blog friend that has endured many waves...Shelly, thank you for teaching us all how to surf!

Friday night we returned to some familiar turf. A place we haven't been since February, a place that many people wish to NEVER find themselves, but a place that is real, it is full of fears, tears, hope and challenges. The halls of this place were a bit busier this time, more children playing, more babies crying, more young hearts and minds not knowing what lies ahead and exactly why they walk these halls each day. It was difficult to find people to join us that night as most like to live outside of that reality, sincerely believing that 'ignorance is bliss.' It is certainly a place that if you don't see, it's easier not to picture in your mind. The pictures I have left in my mind from that night are some I wish to remember and some I can never forget. Both keep me grounded, both keep me grateful, both keep things in perspective.

Friday night we headed back down to The Road Home Homeless Shelter, a place that houses all walks of life: families, single women, men, children, babies...all that have at least one thing in common - no where else to go! They all have their own stories, their own 'waves' that brought them to this place. They all have their own dreams and hopes for a better future, a brighter future for themselves and sometimes for those little feet that follow them through the halls each day. This time there were many more families staying there, a direct result of what is happening in this world...hard times for us all, harder times for some. There were many moments that I had to hold in the tears as we passed the families waiting in line to eat. A sweet mother, we met that night, in line holding one baby, only a few weeks old as her friend next to her held the babies' twin. The friend holding the twin, was also expecting twin boys within two weeks. There were several strollers being pushed around with sleeping babies of all ages, most under the age of 1. Sleeping and hopefully dreaming of a wonderful place, a place of their own, a place of dreams and acheivements, a safe place for them and their family. Many young children, faces dirty, hair unkept, tattered clothes, running around, smiles on their faces. Children - the face of innocence, the face that can easily hide the uncertainty lerking inside. Many parents hopeful, grateful, fearful...all wanting something more, all wanting peace in their hearts, all looking forward to a better tomorrow, but afraid it may never come. They are grateful people, kind people, they are too Gods children, our brothers and sisters on this earth just trying to get by.

We traveled the hour each way to feed these people once again....we spent over 2 hours with them, not just serving them food, or filling their plates, but trying in our own way to tell them that we do love them, we do care and we will give whatever we can. We weren't there to judge or to scorn, but to serve and to show kindness. It seems as though these days the line between a home or a homeless shelter is becoming thin and blurred.

We dished out lasagna, bread, salad and cookies to the single women and families of the shelter. We cleaned up, put the tables away, and filled up a HUGE yellow cart with leftovers to share with the men upstairs.

WE left a bit more humble, a bit more grounded and a lot more grateful...not only for what we have, but for what we have to give. The things we are blessed with in this life, are truly deserved when we chose to share them. Kurt and I don't have much these days...we don't have a big house, we don't have fancy cars or clothes or a substantial bank account. We fear for the future some days, often wonder what lies ahead and how we'll get there...we have felt many waves lately, waves of trials, waves of uncertainty and some days waves of fear, but we do have humble hearts, we do know what it feels like to be served as we had so many willing to help us since Preslie's birth, and we do know we have an obligation to give back what we can. We are slowly learning to surf.

It was a beautiful night, a night that left those halls quiet, bellies full and parents peaceful...at least for one night!

families in our church and community helped us with food by donating lasagnas, bread, salad and cookies

this was my car, full of food, ready to go!

An Eternal Bond...

2009-08-05T07:38:00.000-07:00

As I look at my sweet Preslie 11 months after her birth and after the realization that our family would be a bit different, I reflect on those overwhelming emotions I felt when we were told Preslie has Down Syndrome. Of course at the forefront was the paralyzing fear of the unknown, a new journey that I knew nothing about. I doubted my abilities, my strengths, my courage...I even doubted my faith. Now that raw emotion, that overwhelming fear has long since gone, even though there is so much unknown with Preslie, the faith has taken over, and with that courage increased and the love for her unmeasurable. Another fear I had, was the fear of being alone in this journey. Who will understand? Where will I turn? Who will I be able to relate to? A journey with a child with special needs and health issues does make you different. Certainly not different bad, or different strange, but different. Many old friends are are a huge part of my life, involved in Preslies struggles, triumphs, milestones and day to day experiences. However there are moments from time to time that I realize I am different now, I have a different perspective, a changed view on most everything. My day usually revolves around how Preslie is doing that day, what doctors appointments we have and if I got any sleep the night before. Our activities are focused around the same things and if we can take Oxygen with us. So at times I feel like I relate a little less to people in my immediate surroundings, but I certainly don't feel alone at the end of the day, when I take a step back and a moment to read blogs, catch up with fellow parents of our very special children. At the end of the day, I am ok with being different now, and feel completely blessed to be a part of such an amazing world, an amazing world of some of the most compassionate, selfless and courageous people I have ever known...now, dear, eternal friends of mine and my family!

Monday night I had the opportunity and privilege to meet some of these people for the very first time and catch up with some others that I have met before. Monday night we were invited to a BBQ in Salt Lake at the home of an amazing family. The family of Jaxson, a valiant warrior that has stolen my heart and teaches us all what it mean to have faith, what it means to fight and what it means to really focus on what's truly important. Lacy and her husband hosted about 8-9 families that night, all with children with special needs. Families that have spent many nights worrying about the health and future of the children, many nights in hospital rooms, many days at doctors appointments, physical and occupational therapy. Families that have refocused their concerns from the usual what's for dinner and what movie should we see this weekend, to what doctors need to be seen this week, what do we need to work on today for her Physical therapy goals, is my baby getting enough oxygen, what infection to do they have now, how will the heart surgery affect the months and years to come, when will the news come that my baby is fighting cancer...all to real and scary thoughts that these families entertain in their minds everyday. The bonds that you form with these families seem to go deeper then the occasional weekend BBQ or finding that you have something in common...these bonds usually start off very deep, very real and grow eternally from there. You tend to love their children as though they are your own...the fears that you see the family going through become your own and the prayers these family send out into heaven each night for the safety, protection and health of these children become your own. You cry for them, plead for them, and rejoice for them...you love them, sincerely, truly, without agenda or need for anything in return, you love them. Monday night I spent 4 hours with people I love, with people I am connected to forever, with people that are a bit different, like me!

Preslie and Ella meeting again! Preslie is not mad, this is her new photo look! :)

Emily holding Preslie. Wish I had more time with her sweet Justin!
Ellas mom, Denise having Preslie time!
Finally, my moments with Jax...he has a piece of my heart! A true warrior, a true piece of God's perfection!
Dear friends, for life!
Preslie, Justin and Ella
Preslie, enjoying an 'older boy'!

built in toy...

...and not just for her!

Hot temperatures, refreshing swimming pools, In and Out and a Birthday Cake...

2009-07-31T08:33:00.000-07:00

We had been debating to take that 10 hour drive down south to the land of extreme heat for my birthday for quite some time. Tuesday, July 21st was a tough day for both Kurt and I...a day that may drastically change our future forever. By the end of our meeting in downtown SL, I was exhausted, emotional, yet relieved that meeting was over with and things could be dealt with once and for all. At that moment, Kurt and I standing in the parking garage going over the prior moments and reminding each other 'we'll get through it', we finally decided Phoenix was just what we needed. A getaway before all the craziness and hard-work began. So Wednesday morning we loaded the car and headed south.
Phoenix is a place I love to visit. I spent 15 years there, it's where I grew up...it's where I grew to love shopping, eating and of course, swimming. My dad and grandfather as well as 2 of my very best friends still live and they all still put in quite the effort to get me to move back! A family friend was going out of town that same weekend, but offered his house and pool to us. Mom and the boys pretty much camped out there all week, while Kurt, P and I spent our time about 10 min away at my best friends house. While I was dreading spending the week in such horrible, Phoenix summer heat - the kind that makes you feel like you are standing in an oven at 450 degrees - it was quite refreshing to return to my childhood and swim, swim, swim. Most of the time was spent in the pool, watching my boys carefully navigate through fairly unfamiliar territory, and laughing at our mountainous-pasty white bodies shed clothes into our swimsuits. The boys may have just swam all night, or until they passed out desperately trying to last just 5 more min in the refreshing water. It felt great to be in the water again - completely unfamiliar scenery these days...no mountains, no bunnies or deer or moose, no snow, no sweatshirts needed in the middle of the summer, no dirt roads - just one big city... lots of concrete, lots of people, lots of heat and lots of water!
Friday night my father, with the help of a couple of my dear friends, threw me a great birthday party. A night of yummy food, friends I hadn't seen in a year or so and friends I hadn't seen in 14 years...laughter, pictures, cake, tired kids and introducing our princess to great-grandpa and very dear friends. It was the perfect way to start this new chapter, new year, with the people I love the most. My sweet grandmother passed away a little over a year ago, before she new we were having a girl, before she got to hold sweet Preslie, before I got to say goodbye, so watching my grandfather with Preslie triggered quite a few emotions. I think it laid to rest concerns and worries about the unknown for him, and reassured him that she is a blessing and nothing to worry about. It was great to share a piece of my heart with very important people.
Saturday morning, Kurt, Preslie and I went to brunch with my dad, his girl friend Loriana and my grandpa at a small airport nearby. After brunch, we all visited my grandma's grave. Another sweet moment with my family, to feel so close to Grandma. I am sure she is with me more than I realize and the cemetery isn't her, isn't who she is or where she is to be found. But there is something to be said about a quiet moment spent at a loved one's final resting place. There is a sweet spirit there, lots of memories, lots of tears shed, lots of hope! A very special way to end our trip. We indulged in a couple more of my favorite Phoenix treats, then Sunday morning headed back north, home. I came home with a new sense of energy, ready to tackle this week and all it has held, ready to face the future as unknown as it might be and so grateful for the people I love and that love me. Each day is much easier to tackle when you know you are not alone.

loving the water

daddy and P enjoying the water!

our Jaden, being Jaden!

Grandma and Kyler jumping in!

Preslie in another pool, this time with her own little floaty!

My best friend Jacky and lil P - a very special bond!

Me and my boys celebrating my big bday!

Grandpa and his sweet grandkids...at least one is smiling! :)

Dad, me and Preslie - 3 generations!

My 'best friend', Jody, meeting a very tired little girl!

Friends for life...mom's and daughters!

Jacky, Me, Krysten, Anna (2 friends I haven't seen for almost 14 years)

Me and my sweet man!

3 peas in a pod, going out for a drive!

grandma playing with her grandsons!

Loving the pool!

Finding my way...

2009-07-28T21:23:00.000-07:00

"Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others."
Joseph B. Wirthlin

It seems as though our family has set out on uneasy seas once again. We had been tossed back and forth and had endured raging storms these last few months as well as begun new journeys without much of a compass or map to show us the way at times. We kept on forward, slow and steady as my dear friend reminds me often...

The scare with Jaden a couple of weeks ago happened in the middle of some family turmoil...just when you think the winds of change have died down, the seas are calm and there just might be smooth sailing for a while, you notice the clouds rolling in, the air feels different and it is once again, time to prepare for the next chapter in this journey called life.

First off, Jaden is alright...doing well! His blood tests did show low iron levels so for now we have this really yummy medicine and vitamins we are giving him each day. The hardest part was finding something to his liking and strong enough to hide the taste of the medication. Sunny D won out and secretly carries the medicine each day. Hopefully with his iron levels up, the episodes will become less frequent and less severe. If not, then cardiology will get to meet yet another Therklesen!

When Preslie came to us almost 1 year ago, we were already in the midst of fear, anxiety, and heading down an unknown path with our company in the middle of this horrible economy. Our company, an excavation company, unfortunately, is solely economy based. We had been wearing ourselves very thin trying to pay all of our corporate obligations that we often sacrificed our own personal finances. We did the best we could fighting an uphill battle until a friend of ours gave wise counsel one day and we let all those obligations go that we had been imprisoned by for so long. December of 2008 we closed down our excavation company and Kurt began a new career path in hopes for some peace, a steady paycheck and the comfort of a job he enjoyed. Thankfully he is there now...a great job we are very grateful for, but unfortunately those financial ghosts we were hoping would fade into the past came back and it's now time to deal with them. The last couple of weeks have been a whirlwind of information, notices, decisions, questions, concerns, worry regarding future and as I look forward, seeing a future that is more unclear then it has ever been.

Last Tuesday was a really difficult day for Kurt and I. We realized that the financial backlash of owning a company in a really tough economy was inevitable, but the pain and the fear is really unknown until it comes full force. So Wednesday morning Kurt took the kids and I down to Phoenix (home) to see friends and family and for my birthday weekend and before reality became all too real and all too overwhelming.

We returned late Sunday night and I have slowly been sliding back into the harsh reality we are in the midst of.

In my heart of hearts I know we will be OK...I know we have guardian angels watching over, carrying us through, offering comfort during those times of fear and distress. I know God is near...I feel his presence now more then any of our financial struggles in past years. I have allowed myself to feel Him, allowed myself to give to him the things I truly have no control over, the things I would normally fight to control with all my might. With that, I find strength in my marriage, I find courage in the eyes of my husband and hope in the smiles of my children. I know that this is just another stepping stone to something great, something better then us all, something eternal, something perfect.

Slow and steady, one day at a time, one issue at a time. We watch Jaden carefully each day, hoping its a day that is 'episode free'...We cherish Kyler for his willing and able heart, his help, his kindness, his love. We are changing Preslie's formula yet again as she's not been herself, not been sleeping...in hopes it's as simple as her food. We forge on, we step forward in blind faith...hand in hand with each other, feeling the love of our Father in heaven, the support of our friends and the prayers and devotion of family. We fight on...

my beams of light...

...and pillars of hope!

A 'not so typical' Wednesday

2009-07-16T12:10:00.000-07:00

Usually Wednesdays are very uneventful, boring, middle of the week days....not quite excited for the weekend as we are on Friday's, not sad and depressed that the weekend is over and another week is staring us in the face like we are on Mondays. Wednesdays usually come and go without any mention of them or what that day holds. However, this Wednesday ended unlike any other...

A beautiful day ends....a day of sunshine and warmth...an afternoon at the park with one of my favorite old friends/roommates from college. Kids playing, picnic lunch, Preslie soaking up the afternoon breeze and sun, happy as can be as my friend and I catch up on old times and the years in between. Jaden is happy and silly as he usually is...Kyler is busy and active as he usually is. The evening approaches and we head down the road to a neighbors house for dinner and the usual family fun. Dinner finishes, our bellies filled with yummy, fresh from the oven pizza, then topped off with peanutbutter and chocolate brownies, and we are enjoying conversation in the living room as the kids entertain themselves in and out of the house. Preslie is finally coming out of the worst of it and surviving the last diagnosis of Roseola and her latest rash (Yes, a rash appeared about 2 days ago after the fever disappeared), happily enjoying her bumbo as the evening wears on.

Kyler and Jaden are behind the couch where we are seated arguing over a coloring book. They are performing to the best of their quarreling abilities. Kyler pushes Jaden, he starts crying, I insist Kyler report to time-out and then the air grows oddly silent. For those of you that may know Jaden...very rarely does the air go silent when he is upset until he had completed his bare minimum of 15 min of crying and then retaliating against his brother. So this silence was very odd, very unusual. I turn to Kurt as Jaden is out of my eyesight and ask if Jaden is breathing. Kurt looks to Jaden and immediately notices Jaden isn't breathing...Jaden, laying on the wood floor is unconscious and blue. The chaos begins...

You may ask, why would you automatically ask if Jaden is breathing?? Unfortunately this is not the first time Jaden has stopped breathing when he gets upset or hurt. However, this time the scene, the playback in my mind is worse then it's ever been and I am haunted as a mother at the sight of my child blue and lifeless.

As all of us jump off the couch and rush over, Kurt immediately picks Jadens very limp body up and blows in his blue face ready to begin CPR. Jaden finally comes to, begins breathing again and the tears of fear and the horrible disorienting feeling takes over. As those terrifying feelings overwhelm him, the most horrific feelings a mother can have fill my body once again for the umpteenth time this year and I scoop him up and take him to the couch in my lap, checking him from head to toe, praying that my J-Bear is OK. A mother can only take so many of these 'gut wrenching' 'is my child going to die' feelings so many times in a lifetime and I believe I have now hit my quota, fore my heart cannot take much more of that fear.... that dark, debilitating, overwhelming fear.

He finally calms down, complains that he can't breath, but is pink once again, is coherent and seemingly himself.

So today, back to the Pediatrician we go for the 2nd time this week. 'Breath-holding spells' is what the doctor and the Internet by way of 'Google' call it. Occurring in about 5% of children, this frightening and unnerving behavior can occur for several reasons. It may be as simple as anemia or as complex as cardio or seizure related. So now its Jadens turn for the tests. We started today with a CBC and complete Iron blood work up. When those results come back, we either have our answer - Anemia - or we do a cardiology work-up to make sure it is not something more serious then a horrific child-hood episode that hopefully he'll grow out of. In the mean time, we watch him closely, especially around water or dangerous terrain and carry a squirt bottle with me at all times (doctors orders). Apparently the water can help them come out of it quicker and begin breathing. Thankfully this was only about the 5th or 6th time it has occurred, but each time the outcome has been more terrifying and more serious.

We are back to the forefront of waiting, the place that I think I just need to get used to. We will wait for answers on his blood work, hope that I can get that horrible memory of last night out of my mind, and pray we can give the docs a break from the Therklesen family as well as my heart a break from worry and fear!

Our afternoon at the park - Anna, my old roommate from college, our first time together in years and of course little 'P'.

Anna finally gets to meet Preslie

Jaden (mine) and Keziah (Anna's), only a few days apart...2 peas in a pod!

My sweet Jaden...definitely does not look good in any shade of 'blue'!

A smile to end a not so happy blog post...an adorable moment caught...my little Princess 'P'

Our little Miss Piggy...

2009-07-14T13:31:00.000-07:00

People who say they sleep like a baby usually don't have one. ~Leo J. Burke

My bed...a sanctuary away from the reality of worry, decisions, paying bills, cooking for very indecisive children, laundry, dishes and doctors...however, my bed has been something I dread each night lately. Lately it hasn't been a peaceful haven where I can escape the day and get lost in my dreams . Lately sleep usually consists of tossing and turning, pushing buttons to silence the oximeter alarm, making bottles to send Preslie back to sleep, watching the minutes pass by on the clock as Miss P tosses to and fro, fighting my allergies with a forests worth of tissues, cuddling with my baby in hopes she'll let her exhaustion take over and welcome the quiet night, and then realizing its once again morning and can't remember if I even dreampt at all! Miss P was sleeping through the night well before 3 months old. These days, if she has a 4-5 hour stretch my body rejoices in the abundant rest it has just been privy too! Friday night she was up about a hour and 1/2 after I found my way to bed, then just about every hour after and at 6:30 was full of energy and despite the yawning and dark circles under both our eyes there was no way she was giving in to the bed this time. 12 hours later, after a group effort of myself, my mother and my husband, I finally rocked her to sleep and there she stayed for about 45 min. By Saturday night I was at the end of my rope, exhausted, worried, emotional...feeling lost in my own home not knowing what more I could do for our little girl, or why she has not been herself for so long.

12 hours to get our little one to this point...so peaceful, so sweet...only lasted 45 min!

Yesterday we got her into see the doctor again! After the list of symptoms all solidified with my own dark circles, he checked her from head to toe all the while with a perplexed look on his face. Her bowels haven't moved for days and days even after a number of laxitives and sorts. Slight fever, pale face, no sleep...after upping all her reflux med doses, off to the hospital for an abdominal xray. No apparent obstruction or anything too concerning, but she is extremely backed up with nothing moving at all. So, with Milk of Magnesia in my hand, we tackle yet another day, another battle with the bed, another long night, another nappless day...hoping our little Miss gets back to her sweet self and sleep wins us all over.

For now....if there is no napping going on, then we do things my way...we play with hair, we paint toes, then we pray for sleep...sometime in the near future!

We are going on a 7 hour - no sleep stretch today, so with that we gave her her very first set of piggies! Almost makes the sleep deprivation worth it...almost! ;)

Finally, enough hair to do piggies...love them!

She makes all the tough days worth it and all the good days even better!

Although she's not herself and the circles under the eyes are obvious, she's always beautiful!

The sweetest sounds...

2009-07-12T07:45:00.000-07:00

As recommended by our Pediatrician we attempted to feed Preslie baby food at 6 months old. Not much luck with the feeding (still working on it) but we were able to capture some of the most precious moments of our happy little girl. Finally after 4 months of fighting with my computer to get this thing uploaded, I have conquered Windows Media Player and here is our little Pat 6 months old....the sweetest sounds in the world!

The Therklesens and the 4th of July...

2009-07-08T08:30:00.000-07:00

BBQ's, picnics, the park, the lake, vacations, hot dogs, hamburgers, sparklers, family outings, fireworks and matching red-white-blue outfits...all the joys and festivities of the 4th of July. A beautiful summer day to get out and celebrate, eat endlessly, gather with friends and family and enjoy the beautiful explosion of gunpowder in the sky. Unfortunately, we do things a bit backwards in our neck of the woods and the 4th of July was nothing of the sort for the Therklesen family...

Our 4th started off this way...

Preslie exhausted from keeping me up from 2-5 then catnapping until the sun came up. By 6:30 I had her up, down stairs in her saucer so I could make good use of the sleep deprivation I was experiencing and get my house clean for the days festivities. We had plans to go to the park and join in all the fun, finish the day with a yummy BBQ, friends over and then back into town for fireworks...Instead the day began way earlier then I and most sane people intended with cleaning, organizing and doing anything so I wouldn't stop in my tracks and fall asleep. 11 am rolled around and I came back into the living room to find Miss 'P' fast asleep in her saucer. I scooped her up and carefully placed her in bed praying she would finally let her body and mind rest. That she did! By the time she woke up it was late afternoon and our 4th of July fun filled options were dwindling fast. We loaded everyone in the car, grandma included and headed about 45 min away to Provo mall. There we let the kids play on the giant tree and took advantage of all the 'hard core', devoted 4th of July BBQ-ers that left the mall empty and quiet. After enjoying a few great sales, we headed to California Pizza Kitchen for dinner, yet another empty place as most families were enjoying BBQ'd chicken, hamburgers and hotdogs...home cooked delight. Again we enjoyed the quiet restaurant with just 5 of us...no dishes, no running all over to cooks, mix, and stir everything to perfection.

After a delicious dinner that I didn't have to cook and watching Jaden enjoy the butter way too much, we all came to the conclusion of 'who needs fireworks when you have the Transformers?' We all then spent the next few ours in a dark theater watching Transformers. Unfortunately, I was a bit disappointed in the fact that Hollywood had to make a movie that would appeal to children of all ages (especially the young one's) a PG-13 movie and do as Hollywood does, add sex to everything they are trying to sell. The kids laughed and were completely entertained for 2 hours and Preslie successfully survived her first action film in a theater. We traveled back up the canyon watching fireworks explode out the windows on all sides of the car, tuckered out from our busy day doing everything BUT the usualy Independence Day Activities.

A BIG THANKS...

2009-07-03T06:25:00.000-07:00

We are brought to this earth with a complicated journey set before us. We are given a family we don't choose and as we grow older begin wondering through our trials hoping we are not just left alone...hoping there is one other person out there that might understand how we are feeling. Sometimes its our families that leave us feeling most lonely, that leave us questioning this whole earthly plan. Thankfully some of my family is very great, very supportive and is always there when I need them. Unfortunately there is also some that simply don't care. Ten months ago I had no idea I would be taking a huge journey into unknown territory...that although I had some of my family, I would certainly need other's to help me through those hard moments, to tell me they understand, to know what I am feeling and to allow me to share in their journey as well.

As I look around at the people I call friends, and even some that have become family, I realize that God's plan is so perfect, so intricate and put in place to help us get through. My heart has been filled with gratitude since the moment Preslie was born and I began reaching out. So many out there, I have never met and fighting some issues much greater then mine, still reach out to lift a weary heart, or calm a worried soul...thank you...

Two nights ago my dear friend Lisa, a sweet spirit I was blessed to meet in the NICU with Preslie had ordered pizza for my family so I wouldn't have to worry about dinner for one night with a sick baby. It just so happened that that night Kurt worked 14 hours, so this simple act of kindness gave great relief to me and instant gratification to 2 very hungry boys. Thank you my sweet and dear friends, Lisa and Davy for your love and kindness.

Although its about 10 days after the onset of symptoms for Miss 'P', her symptoms are still taking over, which makes getting anything done above and beyond the bare essentials nearly impossible. Our ped informed us that with Preslie, these symptoms could last over 2 weeks.So I guess we brace ourselves for the 'extended version' of this wonderful flu and hope that soon Preslie will win this fight...the irritibility will be replaced once again with her endearing personality, the sore throat will subside and feeding will be a peaceful moment free of discomfort and tears and that she will find solace in dream land and that her dreams will last more then a fleeting moment and her naps will leave her refreshed and smiling.

This is a 'pre-flu' photo...hanging out on our back patio

Half way through...

2009-06-29T12:18:00.001-07:00

After word that this wonderful Flu is making its way through the neighborhood and our church was cancelled for the first time, EVER...we are now half way through the yummy Tamiflu meds for both Preslie and Jaden. Shockingly enough, Preslie will take anything...any medication ever given to her, whether it sends me plugging my nose or wanting to gag on her behalf, she takes it, always has. We finally found ONE that not only Jaden hates, but Preslie has a really hard time getting down too...TAMIFLU. It must be some nasty stuff, because they both cry everytime they see the white suringe coming!

Jaden seems to be fairing things pretty well. Certianly not himself...very whiny (even for a 3 year old) and coughing still, but nothing too serious to worry about with him.

Preslie on the otherhand...what goes on beyond those sweet blue eyes is often a mystery to most. She's not eating much, only about 12 oz of formula yesterday; which, for her, (shown in many rolls of her arms and legs), is not that much. She is VERY figity and aggitated when she tries to eat, which, must be the sore throat. She is quite congested, not sleeping well at all, pale and very quiet. Our sweet girl is also plagued by a yucky eye infection...yet again. Her left eye seems to get infected every couple of weeks...very red, very wheepy, swollen and painful. And finally she almost got her first fever ever...almost. In 9 1/2 months, Preslie, amid all of her many many infections has NEVER had a fever. The doctors mostly shrug their shoulders and change the subject when that fact is brought up. We are not sure why she never fevers, but she never has. She actually runs a bit cooler most of the time. Yesterday she reached 99.6, which for her, is HUGE. So we've kept her on Ibuprofin to keep fever-ish down and pain bearable. Her ped should be calling later for an update, so we'll see what magic he has for us and an answer for her sweet eye. For now, she is finally napping and I am exhausted...

She's just not looking like herself these last few days...

Tamiflu here we come...

2009-06-26T16:39:00.000-07:00

Stuffy noses, yucky cough, cranky baby, feeding issues, sleeping issues and 1 phone call = possible H1N1 (Swine Flu) infection! Normally I am not the type of mom that freaks out over the small stuff, especially after this last year...cold, strep, ear infections, cough...that = normal around here. But with our lil' P - compromised immune system and ALL is a different story.

the 1 phone call that send me into 'worry - WHAT IF ' mode came yesterday afternoon. A phone call to tell me that Jaden's Primary teacher that he spent 2 hours with on Sunday has now been confirmed to have the H1N1(Swine Flu). That gut wrenching feeling had returned...a feeling I spent 8 months being held captive by. The flu is just the flu, but simple things like ear infections, strep throat and RSV have reeked havoc on my sweet baby girl too many times already. I was not ready for this one.
After hearing Jaden coughing all morning today and for the 3rd day in a row waking up to a very cranky baby, I realized that being optimistic and covering my house in disinfectant and sanitizer might already be in vain. Ironically enough, Preslie had her 9 month check-up and Kyler had his 7 year check-up at two today...by 8:30 I had also schedule Jaden in at the same time.

That look in Preslie's eyes today reminded me of this winter we were grateful to survive. The purple circles underlying those eyes that speak misery and discomfort, and the fight just to get her to eat or give into the desperate need to sleep has got me tied in knots. You think warmer weather means no more illnesses...we'll be infection/disease free for at least another 3 months...right?? WRONG.

So after a couple hours at the doc checking all 3 kids from head to toe, we are sent home with a mountain of prescriptions and precautions. Both 'P' and Jay are on Tamiflu to get a head start on the already mounting and miserable symptoms as well as a few others that I am not even sure what they do. Preslie's throat is all red which explains the misery at meal and bed time and with our little 'fever-less' P its hard to tell what else might be causing the discomfort. Jaden's cough progressively got worse and a fever began early Friday evening. By night fall I had changed my clothes 3 times as I wore pretty much everything I attempted to give Preslie. It's almost midnight...'P' is asleep, mom took Jaden to help out and I wonder how this next battle will turn out. I am exhausted by the 'what-if's and the fear running through my mind. Truth is, no matter how you try to talk yourself out of walking that path of fear, if you stop long enough to think, you realize you are smack dab in the middle of it. Which explains my snapping, bad mood, miserable mom day. Trying to swim the surface...keep my head above water, treading as fast as I can, trying to stay strong; when underneath it all, I am a big mess. It's just the Flu...right? It's just the flu...We shall see what tomorrow brings. Please remember my kiddos in your prayers...pray that's all it will amount too...just the Flu!

The phone call we've been waiting for...

2009-06-22T21:53:00.000-07:00

Limbo: imaginary place for lost or neglected things

11 days after Preslie's sedated ECHO and numerous calls to Primary Childrens, we finally hear from Preslie's Cardiologist. 4 hours at the hospital, another IV, another sedation, time, money, and another hard day for our princess all to find out we have at least 2 more months of O2, 2 more months of worrying about her oxygen levels, 2 more months of trailing her tubes behind her...2 more months of wondering what's going to happen next...will she get through this, will this just go away, will there be heart surgery at her 1st birthday. The doctor said that they would like to wait until the 6 month mark after the RSV and Pnemonia to make sure everything is healed before they do anything to fix the issue. Good news: her heart hasn't gotten any worse, but she is still on O2 when she sleeps, still de-satting, still risking injury to her brain everytime she stays low for more then 5 min...and once again we are in the midst of the ever frusterating, ever hazy, LIMBO.

This state of uneasiness, this overwhelming state of being that has been haunting me now for quite some time has even gotten harder to deal with. Kurt and I had plans to move a couple of years ago, had plans for our future, for his career...our future was laid out. All of those plans unraveled within a few months and we found ourselves giving into 'that power' some of us spend so much time fighting against. We did feel in our hearts that there was a reason none of our plans worked out. That reason was our princess. We were exactly where we needed to be when she came...we had the support group we needed, the love, the kindness, the service...the entire package. But floating around, still, in the back of our minds was an unsettled feeling as though this would not be our 'home' for the long term.

California wasn't just a trip for our family...wasn't as simple as a family getaway, a needed relief, but the start of something more. That trip stirred emotions, raised questions, gave answers and pointed out something very poingnat to us...the altitude is too much for our baby girl. That one realization has thrown us smack dab into the middle of a crazy LIMBO. Knowing she did so much better in California, knowing our 'home'...our 'safe haven' isn't safe for her...isn't good for her little heart. It now has us spinning, questioning everything that has happened to us in the last 6 months, sorting through 'coincidence' and 'signs', sorting through emotions and opinions of others. Not only is this a state of confusion and questions for 2 people, but an entire family. Trying to discern the promptings of 'heaven' and our own desires and wishes is one of the hardest things I have had to learn. All of those challenges are now starring Kurt and I directly in the face. Decisions need to be made, careers need to be changed, lives need to be moved and a new start is calling. But which direction do we go? And how do we get there?

Do I take today's call from the doctor as a sure sign that it is time for a drastic change, that it is my dear Heavenly Father's way of pushing us forward, when I feel like some days I am only spinning circles.

So many questions, so many emotions, so many answers, but which one's are mine? For now, I wake up each day and kiss my little princess with a promise that her and her brother's come first...that her health is at the top of our priority, then I get out of bed, feet planted solidly on shaky ground and I move forward...I do the laundry, I pay the bills, I pray with my kids, I hold my head high and trust my gut, trust our answer will come, I trust the only thing I know...my Father in Heaven to guide us safely through the rough seas, through the course that didn't come with a map, I trust we will end up happy, in better circumstances, and that we will all be better for it. I end this tonight fighting my frusterations of the unknown that lies ahead...the unknown that surrounds every part of my life, but I focus on the hope, the sure knowledge that we will be OK, the hope that a greater power that sees so much more clearly then I am able to, loves me and is there as an invisible hand guiding me and my family to higher ground, a safe harbor where we can dwell in peace...

the heart and soul of my HOPE!

One final stop...

2009-06-19T12:36:00.000-07:00

Thursday morning I tried my best to get us another nights stay at the condo, but being Memorial Weekend there was a slim chance that anything would be avaliable anywhere in San Diego for a decent price, so even though we hated to say good-bye to one of my most favorite places on earth, we headed north on the 15 back toward the 'high-country'.

However about 6 hours into the drive a quaint little town stopped us in our tracks...LAS VEGAS!! Sascha, Kurt's sister from New Zealand, had never been to Las Vegas, so we figured, why not!? None of us were quite ready to return to reality anyway, so we got a condo there for the night and I do have to say, the nicest one yet! It was 4 miles south of the strip so we didn't have to worry about our children peering out the window and the Vegas night life and being corrupted at such a young age. 2 bedroom, 2 bath and 5 pools was good enough for the lot of us! We got settled late that evening, changed, cleaned up and my mother, Kurt and Sasha headed out for some sight-seeing. I opted to stay back, shielding my children from 'sin city' until they are at least 10 and I don't have to attempt to give answers to the 'what are they doing mom' questions! I bathed Preslie, snuggled with her a bit and she was off to sleep. Ky, Jaden and I ordered pizza at 10 at night, delivered at 11. Utah pizza places have been closed for hours by that time of night. Vegged out in the living room, we enjoyed our pizza and a movie.

Preslie in our condo and still lovin the NO O2!

Friday was one of the best days yet and something that my children haven't experienced much of...an entire day playing at the pool! My children have snowboarded, skiied, hiked to waterfalls, been 10 feet away from deer, moose, and every vermit imaginable (all in our backyard mind you) but never spent a day at the pool. I was able to watch my boys smile, laugh, scream, splash and giggle for nearly 7 hours while playing in all the pools. It was as though they had 8 months of built up energy that needed to be spent. Jaden never missed a beat pushing Kyler into the pool and Kyler, gills and all, only left the pool to use the restroom and nibble on lunch. They were happy, laughing as little boys should. Even Preslie found hours of entertainment splashing in one of the smaller and warmer pools. Her curiousity was at it's peak playing around in this liquid splendor. However, her energy wasn't endless...after a couple of hours in the cozy water, she finally gave into the exhaustion and fell fast asleep on my shoulder. No fight, no whining, no argument...the days sun and warm water got the best of her as well. We left the pool exhausted...just as we should on vacation. The children as tired as they could be, permanent grins imprinted on their soggy, red faces.

Playin with my girl in the pool!

daddy and Ky

finally a good photo of our J-bear

Lil' P and Grandma

sweet kisses

our little fish - with Grandma

daddy and his princess

loving the water

We checked into a different hotel for the night as ours was booked for the holiday weekend, got showered and dressed and after a yummy dinner, my sweet husband dropped mom, Sascha and I off on the strip and took the kids back to the hotel for bed. For the next 4-5 hours mom and I took Sascha on a LV tour. We walked most of the strip, watched the water show at the Bellagio, strolled through the Forum Shops watching women and men spend way too much on the fun accessories of our lives and slowly made our way back up the strip to our hotel. About 2 am we allowed our tired legs and feet a break and quietly climbed into bed for one last time before we were homeward bound.

one of her new tricks learned on vacation!

The next morning after some breakfast and a little shopping, we headed north on I-15 back home, none of us quite ready for the adventure to be over...but knew we were going home a bit different. We were refreshed, relaxed and filled with laughter, souveniers and countless memories to last us all a lifetime or at least until we heed again to 'vacations call.' I will never forget the magic we experienced that week...never forget the joy I felt as a mom being able to take my kids out of the moutains, leaving the sticks for another world. Watching the joy radiate from thier faces, their legs so excited to carry them to the next new adventure, watching their eyes open in wonder, taking in everything and anything in their presence. Watching Kurt not have to worry about work, or being laid-off. Not thinking about 'how he was feeling' or 'how he was healing' but too getting lost in his childrens joy. Taking my mom away from 2 jobs, from stress, from the daunting day to day responsibilities and allowing her to experience this adventure with not only her child, but her grand children. And of course having my dear sis-in-law travel so far to enrich us even more...to get to know us all a bit better to and to leave us with part of herself. It was a week I am so grateful for, a week I wasnt' sure really would be able to happen and a week I will never forget. My tan has faded, some of the souveniers have broken, but my memory is clear as day and I have pictures that will last even longer then what I have carried with me!

Our adventures coming to an end...

2009-06-18T10:05:00.000-07:00

Two days at Disney Land, one on the beach, one at sea world and the opportunity to meet TWO very special families: Needhams and Vollmers...what more could one vacation hold to make it feel any more complete or any more memorable?! Our last day in California was bitter-sweet. WE had so much to be thankful for...our time together as family, our time out of the house, our time away from home, our time away from doctors and time spent as family at the most magical places on earth. We felt truly blessed. Thursday morning there was one more thing I wanted to do in San Diego and that was to take everyone to Sea Port Village by down town San Diego. I had spent a lot of time there with my family growing up, so why not pass on that tradition and share a piece of me with those I love the most. There are no big rides there, no Disney characters or large attractions, but there is a different feel there then any place back home. A quaint little shopping village with souvenier shops and stores of all kind as well as great little cafes. Nothing spectacular. But all of this sits on the bay, looking out into the ocean...a soft ocean breeze whisks through there, you can smell the ocean water and life is pretty much care free. After such a long winter of cold, snow and fireplaces, it was nice to be amist the total opposite. With Preslie in the stroller, we spent the morning walking around there, taking pictures and enjoying the perfect weather, then stopped to get a bite to eat. We walked out on the peer for a bit, taking in the ocean and all it's splendour one last time before we headed miles away from the coast. I believe a big part of my heart is with the ocean, a big part of my soul desires to be by the beach. It was a perfect way to bid farewell to California, at least for now...'The Girls' at Sea Port Village

Priceless!
Me and my best friend-our last day in SD
Grandma and Jaden takin a walk
My boys

She's takin it all in and loving the no O2

Ky and I at Sea Port Village

Kurt and Ky
He refused the whole trip to get his picture taken, but I have my ways!

Our adventure wasn't over yet...we still had to pass through Vegas...

Yes, Still Cali...

2009-06-16T09:00:00.000-07:00

I've been home for 3 weeks and still haven't finished posting about our trip. Lots of changes and decisions have come since our return, so I have been overwhelmed with all of that...but I am here, and I will hopefully finish posting from our trip this week! 'Hopefully'!

Wednesday morning we awoke well rested in our cozy condo in San Diego, ready for our next adventure...Sea World. As long as I can remember, Jaden has been facinated with ocean animals. I am sure it all began with Finding Nemo but continues still with Shark Week on Discovery channel, plastic fish and sharks for the bath tub and his overactive imagination about the ocean. I was so excited to see the boys faces with each new show and display at Sea World. We got there shortly after it opened and was disappointed to find out that the 'Shark Encounter' was closed, but knew we'd have a great time anyway. We started things off with the Dolphin show...what a great way to start the day. Just being in a place where you are surrounded by some of Gods most beautiful and magnificent creations is wonderful enough. I watched Kyler closely during the dolphin show. You could see his eyes opened in wonder and awe and his mind racing, trying to comprehend how incredible these creatures are. Jaden was thrilled to see the jumping and splashing, and wondering why we couldn't have one of these at home!

We made our way through the park, flamingos, starfish, rays, fresh fish tanks, rides, lunch and then to the Shamu tank! Each stop being better then the last and the kids truly enjoying each moment. No worry about snow, winter, being cold, going to school, going to the doctor, mom and dad taking Preslie to the hospital. Finally the boys minds were clear, free and able to enjoy themselves and everything around them without a shred of worry. What a blessing to be able to witness that and experience that with your children. They have had far too many worries for their sweet, innocent minds this last year. It was time for them to run free, laughing, smiling, stuffing their faces full of sugar and being kids once again.

The day was made complete when we met another wonderful new blog friend. Denise, and her girls came from Temecula to meet us spend a few hours with us at Sea World. We met by the 'Journey to Atlantis' ride where Kyler and the girls found themselves completely happy! I finally got to meet sweet Ella who is only bout 6 months older then Preslie and not only do they share that gift of the extra chromosome, but they could be sisters. We continued to walk the park, everyone running from ride to ride, but I found myself completely content visiting with Denise and Ella. Ella and Preslie had their bone-marrow biopsy on the very same day and have had many visits dealing with blood issues to their doctor and hospital. Yet another great frienship foreged, one that will last a life-time.

We all got to enjoy the final big show of the day...'Believe' the Shamu show. The moments during the show were perfect moments, moments that will forever be burned in memory. My husband by my side, boys starring in awe and excitement, Preslie on my lap, Mom and Sascha behind us taking in all the splendor themselves and our dear new friends right next to us. All of us, happy, healthy, enjoing the beauty, the strength, the power and the gentleness of these amazing animals. All of us away from reality if only for a few moments...away from work, from chores, from paying bills, from the economy, from the hospital...away from all of that that can be daunting and wear on us each day.

To top it all off we all headed back over to the 'Journey to Atlantis' ride and took one last plunge, one last splash...let out one last scream, and let the laughter flow as we all got wet!

We said our goodbyes to our new friends...knowing it wasn't a goodbye for too long and grateful we were able to meet and they were able to take the time to come see us. With souveniers and the last of our 'theme park' sweets in hand, we left Sea World with smiles on our faces wishing we didn't ever have to go home!

9 months in the making...

2009-06-15T07:27:00.000-07:00

Nine months ago our whole world was changed...nine months ago was just the beginning of hospitals and doctors, of new friends, new challenges, new bonds, and new adventures. It all began in a hospital about an hour from my home...a hospital that still stirs some very strong emotions when I pass by. Just a couple of minutes after Preslie was born she was whisked away to a room where she would spend the next 3 weeks of her life. This room, decorated in cheerful baby colors and patterns was rarely a cheerful place. This small room held not only machines of all shapes and sizes, the sounds of beeps and alarms resonating from every corner and every wall, nurses of every background giving love and care 24 hours a day, diapers, bottles, medicine, IV's, and warmers...it held within those walls prayers of every kind from mothers and fathers, friends and even of doctors and nurses...that room heard the pleas from every mother in the wee hours of the morning and the silent whispers of faith and courage to the new spirits. This room saw tears of every kind fall from the eyes of the new and exhausted parents, watched sad, disappointed faces go and the eyes of hope enter each day. This room also saw friendships forged, bonds made over hope and worry...the worry and love of our children. Friendships that began with a 'hello' as mothers passed in and out, but grew over countless hours of rocking babies, talking to nurses, and kissing our little one's goodbye for the night. For 3 weeks I sat near Khloe's bed....for 3 weeks I would look in on her as I entered the NICU/Special Care....for 3 weeks I would count on Khloe's mom, Lisa, to take my mind off the moment I had to walk out of there each night without my Preslie. The 3 weeks came and went and we both got to take our girls home about the same time, lives now seperated by much more then 10 feet and an incubator or crib, but the bonds would now last a life time. 9 months passed...9 months of growing, changing, milestones and for us a bit more...but 9 months passed and we were finally able to get together with Lisa, Davy, Khloe and Porter and not have to worry about nurses working around us, beeping machines, or parting from our children at the end of the day, leaving our heart's behind.

Saturday, we spent an afternoon BBQ-ing, talking, laughing, sharing and of course, in awe at our strong little girls that brought us together. Khloe and Preslie sat with each other and smiled as though they have known each other far longer then 9 months...the even interacted at times as long-time friends. It was a perfect afternoon!

Thank you McArthurs for opening your home, and your hearts to us. Thank you for all those long talks, hugs and prayers not only for those 3 weeks in the hospital, but for the last 9 months. We love you and cannot wait until next time!

And she sleeps....again...

2009-06-12T08:43:00.000-07:00

It's amazing how just a few hours down and Primary Childrens can take it out of you! But yesterday was an easier one compared to some, simply because the weather this time worked for us (the constant rain) and Kurt was given the day off. This time I wasn't alone and the hospital, this time...he was right there with me. My sweet cousin offered to take my boys yesterday, so after we dropped them off, we raced down to Salt Lake for Preslies sedated ECHO. She was in a very good mood, which made the 'fasting' thing much easier to handle. When we took her into the 'dark' room and started hooking up monitors, her senses kicked in and she new 'something' was going to happen. Her eyes got bigger, and that sweet chin started to quiver. I helped the nurses get her all set up and tried to hold her hand and talk to her as they placed the IV. I then was able to hold her in my lap as the sedation nurse sedated her once again...I believe this is #7 or 8 in 9 months. And of course our lil' P fought it the whole time, fought the sleep, fought succombing to the medicine, fought giving in....finally after the entire dose, she could no longer fight and off to sleep she went. I placed her on the bed and they begun their work. I noticed Kurt standing in the door way, fighting the tears, fighting the emotion, fighting all that was whirling within him. Me, I have been there, done that....cried the tears, even at a simple sedation, fought the pain, even at a simple blood draw...and now after doing 'this' for 9 months have become what I never thought possible, tough, autopilot takes over and I do what needs to be done. Daddy on the other hand, hasn't had those countless appointments with her, hasn't done the blood draws, sedations, so this process is just beginning for him. Oh the love that he has for his little girl is overwhelming and a beautiful thing to witness.

We left them to it as we were starving and went to the cafe to eat, talk and breathe. Even at a simple proceedure, a simple sedation, it is still hard to see, especially wondering where it might lead to.

After lunch we went back to the ECHO room and watched them finish up. She started to stir, started to kick and move, and whine as we moved her upto 2nd floor recovery, then after the long ride upstairs and some warm blankets were placed on her, back to that deep sleep she returned. And there she stayed, not flinching once for a long long time. After a couple of hours I finally decided I needed to help the process along or we would be there into the wee hours of the evening. About a 1/2 hour later after the IV was removed, she had taken some pedialyte and her cords disconnected, we loaded her up and left PCMC once again. This time though, our sweet nurse gave us the blanket they had first layed her on in the ECHO room. An adorable jungle blanket to remind us how tough our 'lil' P is! She slept most of the rest of the afternoon and evening, woke up smiling and back to our sweet girl. Now we wait...wait for results, wait for a plan...we wait!

Quick 'P' Update...

2009-06-08T16:52:00.000-07:00

We scheduled Preslie's sedated ECHO today for this THURSDAY, JUNE 11th at 1pm. I am very anxious to get this done and get some answers!

Thanks for the prayers and well wishes! We can use them all as we feel mighty changes ahead!

This is our sweet girl in Vegas on our way home...she is wearing a gift from the Needhams (this awesome onsie). Of course I had to find a Target in SD to get some shorts so she could wear it, but thankfully already had a matching flower! :) WE love it and thank them very much!

A view from the back...isn't it the cutest??

Our adventure continues...

2009-06-05T08:06:00.000-07:00

Tuesday morning we awoke early, the spendor and sweetness of the magic kingdom still lingering, apprehensive about leaving a magical place, but anxious for the next adventure. The 7 of us piled into the car after methodically packing all of our luggage and new treaures and headed south on the 5 to San Diego.

Luckily we were able to check into the condo early, which left the rest of the day open for anything. We unpacked, got settled, changed and headed to one of my favorite places....Mission Beach. Growing up in Phoenix, I would often travel to San Diego/Mission beach for summer getaways as well as for spring break. It is here, the soft sand, rolling waves, cool breeze, that my heart is!

We parked the stroller on the sand, made a great sand seat for little 'P', layed out our towels, and sat in silence....listening and watched. Kyler immediately headed for the water and that is where he stayed until it was time to go. Jaden was back and forth not quite sure if he wanted to throw sand or get wet. Sascha slept...I slept...Preslie slept...taken to our dreams by the sound of waves and the cool breeze.

Jaden had sand in all places imaginable, Kyler was soaked, and we had had our fill of being lazy on the beach. We got dinner, did a bit of shopping, and headed back to the condo for showers, then mom and I spent the rest of the evening at the 2-story Target that caught our eye on the way in. Nothing like some great shopping to end an already perfect day!

Kyler enjoy the waves

Jaden...avoiding waves and photos...little does he know...

Kurt introducing Preslie to the ocean

Me and my princess walking the beach

Preslie's 'sand chair'

An afternoon nap on the beach

Jaden playing in the sand, or the sand playing on him....not sure!

Preslie's Cardio Appointment...

2009-06-03T07:16:00.000-07:00

Not only are we back to reality, back to the mountains, but back to the oxygen machines and oximeters! Our vacation was not only an escape from the daunting reality that has been our lives for the last 8 months, but an escape from all the machines, the beeps, the canualas and the rest for our sweet Preslie. In California she didn't need oxygen at all, she was perfect, she was happy, she was cordless!!!

Now, back in Utah, Preslie is de-sating again when she sleeps just like before, no better, no worse...low 80's and 70's like before. We have had an appointment scheduled with her cardiologist for some time now just 'incase' Preslie was still on O2 so they could make sure it isn't her heart....

Well common sense tells me that if she doesn't need O2 at a lower elevation, but needs it at home, then it is no longer her lungs, but her heart giving her troubles.

After the usual EKG (which, mind you, Preslie now LOVES because she is now able to grab the leeds, pull them off and eat them...and since there are about 15 of them, it is play time heaven!), a intern came in to talk to me, which I have to say wasn't very knowledgeable as he told me it was probably her lungs, heart and the altitude combined and that she should probably just 'grow out of it' as her lungs continue to heal.

Thankfully a short time later our cardiologist came in and bascially squashed that theory, confirmed my suspicions and said it has nothing to do with her lungs, but it is 100% her heart...the altitude is just too much for it. Which wasn't much of a suprise, but nice to hear a definitive statement by a professional that we trust.

So.....what next...

Primary Childrens will be calling me to schedule a sedated ECHO to look at the hole, the heart, the tissues, measure and hopefully tell us if we can fix it. Then if everything looks 'right', we will schedule her surgery. A bit daunting and nerve-racking, but if it gets my baby healthy and off O2, then its the best option right now. We will know a lot more after the ECHO. The sedation and Echo I am not so worried about as Preslie is almost a 'veteran' at this sedation stuff...so we will just take it as it comes, continue our prayers, hope, faith and God will do the rest!

And finally...

2009-06-01T12:01:00.000-07:00

My sweet sister-in-law is on her way back home, to New Zealand and I, consequently am back to reality...no more 'girl shopping' trips, or ice cream indulgences...at least for a while. Now comes the spring cleaning, updating blogs, photos, answering emails, mail, paying bills and trying to find summer projects for Ky and Jaden to keep the 'brotherly love' (aka fighting) to a minimum!

For now, though, I'd like to go back to 'THE Magic Kingdom'...even if it is through blogging and photos! The day after we met the sweet Needhams, we again returned to LA to pick up Kurt's sister Sascha from LAX, then back south for the afternoon at.....yes, you guessed it Disney Land.

It had been nearly 20 years since I have been (about the same for my mother) and a first for Sascha, Kurt, Kyler, Jaden and of course, sweet Preslie. There is something about castles, flowers, huge rollercoasters, Disney characters, Star Wars and the delectable 'churro' that can melt away any worry, stress or 8 long months of quarantine, doctors, hospitals and infections. It truly is the Happiest Place on Earth! We were able to spend a day and 1/2 wondering through the park, trying to make it on every ride we could and I think we just about succeeded. Thankfully Jaden was just tall enough to ride EVERYTHING, yet still young enough to not quite understand what we were getting him into. Each line, he would happily stand in, having no idea what lay ahead. Since there were 4 adults we were able to take turns sitting out with Preslie on the 'big' rides.

The weather was perfect, the lines were never too bad and the smell that lingered through the park of sugar and other tasty pleasures was priceless!

Our sweet Preslie was...perfect. Enjoying sights and sounds for the very first time, she was usually content taking it all in from the comfort of her stroller and when Daddy needed his 'princess' fill, he would opt to carry miss 'P' and give her a bit different point of view, from a few feet higher, nestled on his shoulders or cuddling his chest. She would sleep when she would get tired, eat when hungry and not once did we need the O2. Her sats were the best they have been in months.

Monday night as we left the park for the last time, we all looked back with tired eyes and souvenirs in hand a bit happier, a lot more grateful and extremely tired! Memories that will never be forgotten, expressions of joy and wonder will forever be burned in memory and the desire to 'go back' is already burning within each of us. What more can you ask for from the Magic Kingdom.

*kyler infront of 'its a small world', *Auntie Sascha and her nephews with Winnie the Pooh, *Daddy with 'P' on 'its a small world', *Jaden on the Finding Nemo ride...his expression says it all, *me and my princess enjoying DisneyLand, *I think Pirates of the Carribean were a bit too much for Ma and Sash, *Sascha, P and I on Pirates before the earth quake...yes, earthquake, *Jaden and his Buzz gun, *how can you not love the tea-cups, * and KYLER our entertainment!

kindred spirits...

2009-05-25T11:29:00.000-07:00

We have once again returned to reality...the bags and their contents are littered all throughout the house, the washing machine is running 24/7, the car has been emptied and Preslie's cannula's are back in. There is so much to share about our week away, but it will have to be done in increments as time is not that abundant. Saturday the 16th the alarms went off at 3 am and our adventure begun. Children were carried from their beds, still in their PJ's for the long car ride, the bags were neatly packed, and we quietly drove away from our home at 7000 feet...everyone wide awake as the excitement began to boil within us all. DisneyLand here we come!

Our first stop was one I had been looking forward to for weeks now...something that I thought about constantly, something I needed. We found a hotel close to disney land for the first night, dropped the boys and my mother off and got back in the car with Preslie, pulled out the map and continued to head north. Our destination certainly wasn't known as the 'happiest place on earth', nor was it a white sandy beach along the coast of california...it was CHLA...Childrens Hospital LA....found on a busy street in a 'not so nice' are of LA. But it was a place I was longing to visit. It wasn't the place that drew me to it, but one of the patients, nestled in room 409, bed B. Those of you that follow my blog know that this family is dear to my heart, though we had NEVER met before this night.

We quietly entered Zoey's room, the anticipation welling up inside of me could now be let loose...there we found Zoey snuggling her dad Mark on the window seat across from her crib. The next couple of hours that followed were priceless. Heather and her 2 sweet boys followed shortly after we arrived and the evening was 'complete.' I had hoped that we were able to meet this sweet family at the beach, or out for dinner or at the comfort of their home, but even on the 4th floor, a place looming with sadness, fear, and exhaustion....I took in each moment as a gift, as something I would treasure forever. We talked, we laughed, we took photos, we exchanged children, hugs, smiles and stories. Not only did I take away a beautiful bracelet I now share with Heather and the sweet warmth I felt as Zoey wrapped her arms around me, but I took away the feeling, the surety that we (us and them...the Therklesens and Needhams, Heather and myself...Preslie and Zoey) were kindred spirits...connected on so many levels, connected at the heart of all that is important in this life, connected for eternity, connected before this all began. Heather had Preslie laughing and bursting with energy and smiles like I had never seen before and I got to enjoy the beautiful and wet kisses of Miss Zoey, as well as moments with Jake, Joe and even Taylor.

That night at CHLA was a perfect start to our 'getaway' ,to our vacation, our adventures. Heather I love you like a sister...I look up to you, I cherish each talk, each email, each comment, and now each moment I have face to face. I adore all your children, your sweet family I cherish. I thank you for allowing us to share that room with you, those moments at CHLA, the stories, the heartache, the triumphs...I thank you for being able to hold Miss Zoey, feel of her sweet, courageous, warrior spirit. She is a gift...our girls are gifts, priceless treasures that have brought such an amazing family, amazing friends into our lives....thank you...thank you...thank you...

Our journey continues...

Heather sharing loving kisses with our Princess

Preslie was completely comfortable with Heather right away...how couldn't you be??!!

There was a connection between those two that is indescribible...Preslie lit up!

Complete heaven in my arms....she is a warrior, a princess, an angel...she is a blessing!

Mark even snuk in some Preslie time!

Me and my dear dear friend Heather...she is truly a beautiful person - inside and out!

A Mother's Heart

2009-05-11T11:07:00.000-07:00

One of the greatest gifts I have been given as a woman is to be a mother. I can now completely appreciate what my mother went through for us, what she feels for us, how she worries for us, and how hard she has worked for us. I watched my mother this weekend, I studied her face, the gentle lines now forming, the softness of her skin, the look in her eyes and all the years of memories she holds within her.

I saw in her eyes countless stories of why the tears flowed freely because of her children. I saw in her beautiful red hair the sweet gray strands that tell of many sleepless nights and worry over her children. Her hands, now pained from the many halloween costumes she sewed, sandwiches she made, cakes she decorated, and tears she wiped away. Her arms have taken a different shape now...a bit tired from all the hard work she completed each day for us, all the hugs she freely gave and the many times she folded them in prayer, pleeding with our Father to keep her children safe. These days her knees buckle from time to time...tired from all the nights she walked the floor with crying children and then walked the floor worried over her teenagers, or the times she hiked, biked, skiied and swam with us. They are tired from running errands, cleaning the house, running us back and forth to school, sports and dance and kneeling in prayer with us each night to teach us that we are never alone. Her feet have walked many miles on our behalf, danced to the tune of many songs, ran ragged as she chased toddlers around the house and made several steps front to back, back and forth vaccuming up our messes.

Then there is that which I cannot see, but the strongest part of her yet...her heart, a mothers heart. I believe it looks much different from that of others. It has been broken many times, it has ached even more...it has had to make very difficult decisions, it has had to let go and at times even fight. A mothers heart is tender, yet strong. It is sincere and eternal. I was blessed to have a mother with an amazing heart, and to now be a mother and feel in my heart, what my mother felt for all of us. 61 years later, her mom duties are not yet finished. She still worries, her heart still aches, she still prays for her children and hopes on our behalf. And when I am tired, worn out and sad, she still steps in as mother and now grandmother. She walks the floor with my children, she prays with them as well as plays. She laughs with us and even cries with us. My mother has endured more then most mothers ever will. She's had to turn the aching of her heart for her son over to that power which is greater then us all...she has been broken and bruised, she has been under-appreciated far too many times...but all, she has endured well. She is my mother and I am so thankful for her.

And now I am so blessed to hear that beautiful name 'mother' and know it's me....I now know that feeling of an aching heart, the countless tears for my children. I know what it's like to hold onto them and never want to let go, to wipe tears from their eyes and place bandaids on knees. I know what it's like to be exhausted at the end of the day, yet blessed to know I get to do it all again tomorrow. To feel the overwhelming excitement as my childen excel at something new and the overwhelming pain to watch them suffer. I have spent many many moments on my knees pleading with my Father in Heaven for them just as my mother did for me. My heart has taken a new shape these last 7 years...it is the heart of a mother.

MANY FIRSTS...

2009-05-04T15:47:00.000-07:00

This weekend our sweet Preslie had 2 - 'firsts'. First, on Saturday, in almost 8 months she had her first outing to a restaurant with us. My father came into town to meet his new Grandson, Gavin, so with that comes all the festivities and this time we were able to join in. Those first adventures beyond the 'safety' of our own threshold were a bit overwhelming...I was a bit uneasy as we ventured out this weekend, wondering if I was doing a good enough job keeping the germs away, wondering as I looked around at the masses...who was sick, who should have been home in bed, would they come too close, or is this too much for her?? The questions did swirl in and out the entire weekend, but oh the anticipation I felt as I got to dress her up and this time we had a place to go...the socks, the matching headband, wondering how she'd be, if she'd smile at strangers, if she'd smile at family...and then of course the completeness I felt as we ALL got to venture out as a family together, finally. Me with Kurt, us with 3...what a joyous feeling.

And Sunday...the feeling I got as I put Preslie in her first Sunday dress, pair of tights and a headband to match, then to carry her in to the chapel, Kurt by my side, Jaden and Kyler all pressed and tidy...we were complete, whole and finally a family together at church. Unfortunately her first outing to church wasn't to ours, but to my brother's as he was able to bless his little boy. A warm spirit came over me as I watched my little brother bless his son for the first time. The little brother I used to fight over toys with, argue on long road trips with, roll my eyes at, is now a grown man, and a father. I am so proud of the tenderness he shows his son, the commitment he has to his family and the unconditional love he has always shown everyone. He made me so proud this weekend and I am so grateful that we were part of it, so grateful he is my brother, so grateful I am an aunt!
Sunday evening we dropped Grandpa off at the airport, warm sentiments exchanged as well as hugs, we headed back up the mountain...home. As this weekend came to an end I started to reflect on my life these last 8 months...the road has been long, the way dark at times, the future unknown and daunting. Some moments have been nothing less then complete lonliness, and I have felt paralyzing fear more than once. And when I have needed people most I have had family members tell me they were simply too busy to read my blog to find out what was going on with my family, then simply turn their backs and choose the road of selfishness instead. I have watched friends fade from our lives to moveforward on their own. I have felt loss, desperation...had to make difficult choices, and have found myself, more than once, kneeling in prayer in the hopes that divine intervention would take over, because I simply did not have the answers, I had run out of peace, hope was scarce and I wasn't sure if I could take on what tomorrow had to offer...the good or the bad.

Through all of that though, through the dark moments, the huge changes we've had to face, the fear of another day, the clouds have broken and the light has shown through...the light of hope, the light of courage, a glimmer of faith, even if it's just enough to take me one more step. My true friends have stepped forward and wrapped their arms around me and a new family, a 'virtual' one in so many respects have been by myside each step of the way. And even though it has been a difficult reality to face...that my friends, new and old have been more supportive and more kind to me then some family, it is truly a blessing , truly a gift from God to have had certain people placed in my path to stumble upon and join in their journey as they walk beside me during mine. How comforting it is to feel God's love each day as I meet new people and feel like I have known them forever. How blessed I feel to know that even through the intangible 'cyber-space' there are bonds formed that will stand the test of time. My love for others has grown by leaps and bounds as I have been given the gift of a new 'perspective' and the gratitude outways all the difficult and scarry moments I have faced. Thankyou for walking with us during this last chapter, thank you for answering my questions, checking in on my family, taking time to give words of comfort and advice, and thank you for the sacrifices you've made to send a package, or write an email. Today I am grateful, today my heart is full.

My sweet cousin finally able to see and hold Preslie for the first time in almost 8 months. She was there in our hospital room when we were told our daughter has a little something extra special!

Preslie waking up from her nap with the cute 'Ugly' doll, that was part of a wonderful package sent to me by a new and dear life-time friend, Heather. Heather thank you for lending me your strength so many times!

And thank you so so much Lynda for the adorable socks for my sweet girl. We LOVE them!

Results...

2009-04-29T18:03:00.000-07:00

With each ring of the telephone these last 2 days, my stomach would immediately start to turn into knots as I would race to the phone to look at the caller ID. The next several moments would be spent calming myself, un-tying the knots and resuming my normal routine, trying to work around the large 'elephant' in the room.

Today, however, the knots were justified as Primary Children's number came up on caller ID and I knew it was the call I had been looking forward to and dreading all at the same time. I had been enjoying my ignorant bliss for the last 2 days but knew it was time to face whatever the results were head on and get this nearly 5 month diagnostic journey over with. I am tired of waking up each day scared of the unknown, tired of not having all the answers, tired of feeling lost. As of today I am no longer lost, not longer on a seemingly endless search for answers, no longer in fear.

The call from the Oncologist was a bitter-sweet call. The 'sweet' part is that her bone marrow is 100% FINE, 100% in good shape, 100% cancer free.All the cells look fine and all the numbers are good. There are immature neutrophils just as there should be, so the problem lies in her blood, not her bone marrow, which is all-in-all GREAT news. The slight bitter part is that we are not 100% 'out of the woods' yet as she is still battling Neutropenia, but there is NOT a very serious or detrimental cause for this that they know of. There is still one test out, that will take 2 weeks to look more in depth for other chromosomal abnormalities, etc., but we are hopeful that that will be fine too. We will not worry about that now, we will enjoy this moment of good news, this moment of peace.

The doctor explained that there are cases of unexplained Neutropenia that children usually grow out of on their own by 18 months of age. So it is a situation that we will still have to be cautious and mindful of, a situation that still leaves a bit of uneasiness lingering. will she ALWAYS be at risk for infection, will they ever know why she has NEVER had a fever?? However I cannot let those questions take away from the days forthcoming...days that I picture with outings to the park, dinner as a family out of the house, going to church together each Sunday now. I can truly enjoy the moments that she looks in my eyes and touches my face without wondering what battle she is silently fighting...at least for now!We will enjoy each moment and not let the last of the unknown get to us. We will continue to watch and monitor her counts and if she continues to fight infection after infection then we can begin treating her with Neupogen twice a week to keep her numbers up enough to safeguard her from all the 'nasties'. We will wait and watch as Neupogen is an expensive drug that most insurance companies do NOT like to pay for unless completely necessary.

So for now and hopefully many more days to come, I can let my mind rest, let the 'what-if's' rest, let my scary thoughts be buried underneath the joy that will fill the many moments that will now take place out of the house, the many moments that will not be cloaked in fear...for now, we will enjoy the gift that God has given us.