Meet CASE!

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.

Sunday, August 9, 2015

Made for His glory.

"Babies are like computer programs. Lots of pieces put together to make one big picture. YOUR baby's programming is all wrong...."-one of my many, many OBGYNs during my very complicated pregnancy. 

My baby was "made wrong"....sick inside of me. No mater how healthy I ate. No mater the fact that I didn't smoke, do drugs or drink, my baby was disabled. He was full of health problems and I prayed. I prayed he'd live. I prayed that if he didn't, I'd have the grace a peace to say goodbye and still exist....I prayed for healing. I prayed for peace in the storm but above all else, I prayed for God's perfect will to shine through the darkness. 
Did I believe God could heal my baby completely? Yes. Did I pray for that? Sometimes but above all else I prayed my heart would stay thankful in ALL circumstances and that this tiny life inside me would bring God glory. 
Fast forward 4 1/2 years. God didn't heal my child and that's okay. I'm at peace with that. Does my heart break a little with every surgery, every procedure, every time they put him under, blow IVs, hold him down? Yes but God can put that back together. He gives me strength along the journey. Sometimes, strength is my only choice. Do I think I'm not Christian enough? Not worthy of a heathy son? Not Godly enough? Do I think God punished me for not being "enough"? Absolutely not. 
My child....no...God's child was made perfectly imperfect and I'm okay with that. 
John 9:2-3

 2.His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

3 "Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.


1 comment:

  1. God's work is displayed to each of his 47,364 followers! :)

    ReplyDelete