It's been awhile since I wrote. It's not because I have been busy or things have been stressful. For once in this last year I have been able to be lazy. ha ha. Things have been great. We are finally feeling comfortable to venture out of our house with little man. It's actually been nice being about to trust his health enough to have a little family fun outside our house. For Halloween, we went down to Clyde and Sheila's house for the weekend. It was a little vacation because Grandma Sheila was willing and great in taking care of Ryks. I could actually enjoy having fun without worrying about him. It's been a long time coming. It's November and I often think about last year's events. This was the month Ryks got to come home. It was a great feeling being able to take him home, but we had so many other crazy things happen between then and now. I am just grateful Heavenly Father prepared me and gave me the strength to get through this last year. It's made me a better person and has given me more hope and faith in our creator. My patience has been tested and my love for the savior has grown. All in one year I have learned so much about my Heavenly Father and my savior. They have been my rock. They have been the ones I have leaned on. I am truly grateful for the miracles and blessings our little family has seen this past year. It's going to be a huge foundation of my testimony for the rest of my life.
Well Halloween was wonderful. We got to dress up and go trick or treating for the first time. Ryker wasn't sure what to do. He did like picking out the shiny wrappers at each house. We all dressed up as a monster from Monsters University. It was so much fun seeing Ryker spend sometime with his Grandparents. He hasn't really been about to do that with us staying home all the time. An acquaintance of ours brought home her little 26 week baby after spending 4 months in the NICU so we got to see them. It was thinking, WOW! I can't believe that was us last year. It was crazy! He was so cute and so little! The oxygen tube was covering his entire face just like Ryker. I am so glad we are not at that point anymore.
Ryker's health has improved once again. He had a sleep study. The respiratory therapist that we had from the sleep study in June was the same one. I was made at her back in June because she was the one that sent us to the hospital. She told Parker that she just felt like something was wrong and she needed to send him. Well I apologized to her. She was following the spirit. Well the study went really well. We found out that he can go down on his oxygen requirements at night and during the day. Right now he has gone down from 3 liters of oxygen at night to 3/4 liters. During the day is tons better as well. He has gone from 1/2 to 1/32 which is the last notch on the oxygen tank. Incredible. I didn't think we would ever get to this point. I am so glad I followed my mom instinct and didn't allow the doctors to trach my little man. The surgery for his hernia has really proven to be the answer to our prayers. I am feeling nervous that at our next appointment the doctors will take away the oxygen completely during the day. Exciting, but scary as well. We will really need to be careful that he won't get sick. We will for sure have to go to the hospital. Praying for a good winter cold and flu season. No sickness at our house.
Physical therapy and occupational therapy have been very helpful the last couple of weeks. We found out that Ryker has a processing delay in his brain. Which is normal for his syndrome. It's a little crazy because I keep thinking Ryker is a just a normal baby that was born premature, but then news like this reminds me that he has a syndrome. But we can do this. We also found out that he has scoliosis in his back. Which is a curve on his spine. We will be doing stretching and positioning therapy to help it, but when he gets older he will most likely have to have a rod put in his back. We will see. I am not to worried about it right now. Ryker doesn't have to get a helmet. Thank goodness for that! Yes his head is a little misshapen, but it has improved. Plus our insurance won't pay for it anyway. So one less thing we have to worry about. Ryks has another swallow study and passed with nectar thick liquids. We were told he has a small hole in his soft palate making the liquid go straight up his nose. Most likely we will be doing surgery for that in January. I will be taking him to the ENT next week for a consultation about this problem. I will keep you updated. All these new developments are small compared to what we have gone through this past year, so piece of cake right!
Things are going the way they are suppose to. I am still not sure what our purpose is here in Clearfield. I am still trying to figure out what Heavenly Father wants of us here in Utah, but finally we have breathing room. And less stress in our little family.
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