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, October 13, 2011

Special boy.

There is something special about this boy. When we first brought him home from the hospital (at 5 weeks old) he weighed 4 pounds 1 ounce. I knew what it was like to take a new baby to the grocery store. The older ladies and very rarely a man or two would stop to admire our girls. Take that attention and multiply it by ten (or more), that's how much attention Case got when I first took him to Wal-Mart. I could barley get a carton of milk without  being complemented on how cute and little he was. Also, people are curious and very often asked me questions about his size. I figured that attention would die down once he wasn't a tiny baby any more. I was wrong. Just the other day I found myself in the front of Wal-Mart surrounded by several women admiring our special boy. I can't blame them. He's adorable. All 10 pounds 4 ounces (hopefully more by now:). Sitting up all by himself in a cart with a smile almost as big as his face. He has a charming personality and quite a few girlfriends already.:) I think he knows God made him different. He is full of love and knows no prejudice. It doesn't matter who you are, what you look like or where you've been, if you come up to Case in Wal-Mart (or where ever he happens to be) he will shine Jesus's love on you. He is a special Boy. He is God's special boy.
P.S He LOVES to drum! Here he is playing Rock Band with his daddy early in the morning.

1 comment:

  1. Oh isn't that precious! I would definitely have been one of those women to stop and admire!

    ReplyDelete