Gratitude and Thanksgiving...

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...

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...

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

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

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!