This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.
Friday, March 15, 2013
As some of you know our life is about change. In 7 days we are picking our 4 children and life up and moving it an hour away. Dan got a job offer back in October and took it. It took 3 months to find a buyer for our house (we had to sell before we bought) but now we are only 7 days away from a whole lot of change. Good change, sad change and a little bit of scary change. We leave our dear, feels like a grandma nurse that has been with Case for a year. We lose the pediatrician that I've grown to love, trust and call all hours of the day. We leave all four of our sweet, dedicated, hard working therapists and well just a lot of special people. Thank God we don't lose our Children's hospital!
As a child, I struggled with change. If I couldn't find my pillow or someone else was sitting at my seat at the table, my whole day/night was thrown out of whack. Well, these past 26 months have been nothing but change and I'm still not used to it!:) I know that change is good. This move IS good. I can feel it deep inside but I still feel anxious. I still feel like I'm "starting over" and have to stop my mind from running through all the "what ifs" and worst case scenarios. Moving with a special Case requires more effort and more change then if Case weren't so special...;) I pray that God goes before us and prepares our way. That help will be there when we need it and that there is another "perfect nurse". That the new pediatrician is patient and gently cares for and about our special Case all hours of the day and night;). I pray that I can trust Him and live in the moment not wasting time worrying about tomorrow. This is a new chapter in our book and it is good. God is good ...all the time.
Worry does not empty tomorrow of its sorrow. It empties today of its strength.
Corrie Ten Boom
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.