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.

Thursday, February 23, 2012

I surrender all.

Tonight while I was rocking sweet Case I was thinking about his feeding issues. He maybe takes a few bites and and ounce on a really good day and by day, I mean 24 hours. I was really wanting him to eat again. While I am thankful for the tube, I desire a bit of normalcy when it comes to food. As I rocked Case I spoke to him, to his belly specifically and told it to empty, to grow, to be hungry again. Sounds little silly, I know but when I was pregnant, I would put my hand on my belly and speak healing to every part of Case's body. It worked for his heart and maybe for some other issues. I would end those prayers something like this, "Jesus, these are the desires of my heart but above all I desire your will to be done." That was a scary prayer to pray. I gave this baby to Jesus. I find myself  (sometimes daily) giving Case to Jesus. Every time I worry, every time I fear, I take him back. Then out of my peace-less-ness, I realize I need to give him back.;)

Tonight while I rocked thinking of these things, I heard the song, "I surrender all". That's really it. I surrender all. Jesus is in complete control. I don't know what His will looks like but it's where I want to be.


Lyrics to I Surrender All :
All to Jesus I surrender
All to Him I freely give
I will ever love and trust Him
In His presence daily live
All to Jesus I surrender
Humbly at His feet I bow
Worldly pleasures all forsaken
Take me, Jesus, take me now,
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
All to Jesus I surrender
Make me Savior wholly thine
May Thy Holy Spirit fill me
May I know Thy power divine
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all




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