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.

Tuesday, November 22, 2011

Hang in there, Baby.

So, as I've said before. God speaks to me in song. I don't usually ask him to but often find a song I haven't heard In months or more in my head. I slept well last night. Not a lot of hours but the sleep I got was peaceful and good. I woke up with bits and pieces of a song in my head. I googled it to get the exact lyrics and this is what I got:

Hang In There, Baby
Things Are Crazy,
But I Know Your Future's Bright

Hang In There, Baby
There's No Maybe,
Everything Turns Out Alright

Sure Life Is Up And Down,
But Trust Me, It Comes Back Around

You're gonna love who you turn out to be



That's not the whole song, just the important part.:) We are heading down to surgery soon!! Oh, boy!


Resting up for his big day.

No comments:

Post a Comment