Halloween 2009 and a look back

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

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...

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!

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

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'

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...

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!