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, February 28, 2012

Here we go again.

Case has his second surgery this Friday. This surgery is completely unrelated to the last. It will be the first of possibly 3 total surgeries to fix his severe hypospadias and other issues with his boy parts. It will require at least one night stay in the hospital. Although this has been scheduled for months, it feels like it has snuck up on me a bit. Time is flying, I must be having fun! Really, I am not nervous or scared but when I think of it I get butterflies. Maybe it's the fact that I'm not sure if it will be one, two or all three procedures and will not know until the surgeon calls out to the waiting room to tell us. I won't know how long he will be under until then. Maybe it's the fact that I'm excited (weird, I know) but I'm actually looking forward to it. Children's and the Ronald McDonald House have been our second home and I'm looking forward to going back. I'm praying for a quick recovery and hoping the pain is manageable. After all, I hear that "area" is pretty sensitive.;)

More great case news:
He is 13 pounds 7 ounces! He is trucking along at a steady pound a month gain. Also, he was approved for at home nursing care for up to seven 8 hour nights a week and one 8 hour day. Yippee for me!! I see sleep and a clean house in my future.:)

"They're gonna fix what?!?"-Case

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