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, September 16, 2012

Sappy Sunday.

So, as you all know I love this very special Case of mine. It's obvious that from the tip of his tiny little webbed toes to the top of his (slightly large for his body) head he is FULL of special. For all 20 months of his far from normal life he has touched, blessed and loved more people than I could ever count. As he walked around the restaurant we ate dinner at last night, it was almost as if he sprinkled joy all around him. Every one he came in contact with smiled at him. He was awed over and adored. Yeah, he's cute. I'll be the first to tell you that but it's more than his adorable little body that has people go out of their way to meet this tiny star. It's his pure soul and his ability to love without discrimination. I didn't realize how easily I judged people by their appearances until my tiny teacher came along. Just the other day this crazy looking dirty man with a lazy eye came over to the fence around the play ground Case and I were playing at. I immediately looked away and tried to get Case's attention so we could both ignore this abnormal looking man. That didn't work. Case was drawn to him. I followed Case over to the fence where he talked, smiled and waved at his new friend. The man was full of joy standing there in need of a bath. Case didn't care what he looked like or that his hair desperately needed brushed. The man was harmless and just needed a smile. That's what Case does best; spreads smiles!:) He takes all that he was given, pulls the abilities out of the disabilities. He is the  special from special needs and needs nothing more than what he was given. There you go, some sappy to add to your Sunday.;)

*Disclaimer: I always watch my kids very carefully and would never let anyone put any of my children into a large, windowless white van. No worries.;)

“The question for each man to settle is not what he would do if he had means, time, influence, and educational advantages, but what he will do with the things he has.”--Hamilton Wright Mabie




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