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 4, 2012

Move Along....

"He's gonna make it, I can just tell!"

Lately I feel like that song, "move along" by All-American Rejects.

"When all you got to keep is strongMove along, move along like I know ya doAnd even when your hope is goneMove along, move along just to make it throughMove alongMove along"

We've been busy in the McNulty house. My days have started early with retching and vomiting. It seems just minutes after the nurses "clock out":) the boy starts retching (again). He's been retching 4-8 times a night for about a week now. The doctor thinks it's the antibiotic he was on so we'll cut it and hope he has more peaceful sleep. So, my days were starting between 5:30-6. And it seemed I just kept going, moving along. It was like I was running on a half tank of gas and not stopping to "smell the roses". Sometimes it feels like I have to do that to "keep up" with everything. As I was " moving along" yesterday (stopping at Giant Eagle while Lainey was at preschool) I got caught off guard by a new "Case fan". Case wanted to walk into the store, so I let him. I held his tiny hand and he walked "tall" and proud backpack and all. A man passed him, looked at him, smiled and said, "He's gonna make it! I can just tell!". He's right. He's gonna make it and bless a lot of people on his way. I may miss some bathes and forget to switch the laundry at night but that's okay. It takes a village to raise a child and two to raise a special one. Lately I've been reaching out to that village and it's been reaching out to us. My kids are gonna make it. They're durable. I can't screw them up too bad. Even during the weeks that I mindlessly, and exhaustedly "move along" Case is going strong and he's gonna make it!;)

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