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.

Tuesday, November 20, 2012

Home is Where the Heart is.


Since Case was born, almost 23 months ago, I gained a second home. Case spent 38 days after his birth at Children Hospital, Pittsburgh and several hundred hours after that. It takes between 2 and 3 hours (depending on traffic) to get there. We go between 2 and 4 times a month, usually. Between appointments, x-rays, blood works, surgeries, tests, tests and more tests we feel like we have two homes. Half of my heart is here in my physical home and the other half in the home that has saved and enhanced Case's life. Yesterday, for the third time in 3 weeks we went to our second home. It was only for a follow up with Neurosurgery but it was pretty early so we went last night and stayed at the Ronald McDonald house. I love that place too I would tell you how much, but that's a whole other blog. Anyway, we saw the PA and the surgeon who untethered Case's cord. His wound looks good. They still don't want him bathing (only sponge baths) for 4-8 weeks (when the stitches completely dissolve). Not an easy task when you have a bath-obsessed baby! Case has several issues that require a neurologist  to follow him (brain stem abnormalities, Stenosis of the Foraman Magnum, an unclosed fontanel, a rather quickly growing head, and low muscle tone on the right side of his face). A neurosurgeon only fixes the problems but a Neurologist follows, explains and tests the problems that exist. Therefore, we have added another specialist. Number 16. Number 20 if you include his pediatrician and therapists. Holy, frekin' cow! So, the moral of the story is that I LOVE my big, awesome, strong boy and my second home.


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