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, September 13, 2012

Therapy, growth and random fevers.

Case had a great week of therapy! Yesterday was speech. He said a new word and did two new signs! It was also nice to just watch him play and learn (as it always is). Today we did back to back therapies at a play ground. First Physical then Occupational. Case climbed, talked, ran, slid, picked flowers, blew kisses, "caught" kisses, threw garbage away, blew threw a straw, drank two sips of juice and licked and sucked on cookies. That's what we call good therapies! He is learning every day! He's still not growing much physically, but mentally is growing leaps and bounds! This past week he had some random fevers. One went as high as 102.7 (a little high for comfort). Because Case only has one kidney it's important we catch a kidney infection right away. His pediatrician wanted to see him so, I took him last Thursday. It looked like it could be a kidney infection or a virus. I was given the choice of going to the local hospital right away to have them draw blood, cath him and x-ray him or I could take him home and only take him if it got worse. I chose to take him home and watch. It's always nerve wracking making decisions like that. Thankfully, I made the right one! He still was feverish off and on but he didn't get worse and was completely better by Friday evening.
So, that's a quick update on mini man! Oh, and he's been a bit of a local celebrity since he was on the news.:) People recognize him when we are out sometimes. He is so special!

Oh and he got this AWESOME, new, hand made backpack from, TuFeBoutique!

Gotta love therapy in the park!

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