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.

Saturday, October 8, 2011

Case update.

Case had two appointment's at Pittsburgh Children's Hospital on September 28. One was with Gastroenterology and the other with Endocrinology. I learned early on in Case's pregnancy that worry does no good.

Refrain from anger and do not fret; it only causes harm. Psalm 37:8
Who of you by worrying can add a single hour to his life? Matthew 6:27

But I still do it some. I think less than I did back then and hopefully more than I will next year at this time. Turns out there was nothing to worry about.:) Case was refereed to both doctors because of slow weight gain. He gained around 4 ounces in two months (not good). His pediatrician set up the appointments at the end of August. From August 26-September 27th Case gained 18 ounces. Bringing him to a whopping 10 pounds 4 ounces. FABULOUS! It took a lot of me pushing, and shoving and walking him around singing with his bottle in his mouth. Oh, and tons of prayers and patience.:) He worked so hard for those 18 ounces and I was so pleased with him. The doctors were happy too. However, Dr. Roldolf (an exceptional GI doctor) said there is a chance he'll want to place a G tube. It is a tube that would be placed surgically (he would need to stay at Children's for a few days). I had a surprising amount of peace about this. It's not ideal but I feel if it's necessary then, it's no big deal.

All and all Case is a happy, amazing 9 1/2 month old. He is "army crawling", sitting and pulling himself up. He says "da-da" "hi" and lots of other word-like sounds.

He is such a mini-man!

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