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.

Monday, September 24, 2012

Riding the Gain-Train!

It seems for the first time in oh, 13 or 14 months, Case has gained over a pound in 4 weeks! Yippie! It's about time! The GI doctor was very impressed. He has us staying at 42 milliliters an hour for 22 hours. Each milliliter is one calorie equaling 924 calories in 24 hours. I don't know if that's the magic number or if he's finally over a hump but here's to hoping he keeps it up!! He will obviously keep an eye on his height too. We don't want him ":wider than he is tall.;)". Also at the GI's on Friday he said he thinks he has an infection in his GI tract. He sent a sample of his poop to the lab and I should get results tomorrow. That would explain the weird poop 4-7 times a day and the random fevers. If it is an infection, it should be taken care of with an antibiotic. Also, we are venting 22 hours again but now can we can pitch the bile. Yay for that! The doctor had a sample of blood drawn so he can have a "baseline for electrolytes etc.". If Case seems dizzy or starts acting funny we will have his blood checked again and if throwing the bile away is harming him we will put Pedialyte into his belly. Good deal. So now the big boy is 16 pounds!! He is speaking more and uses a few signs.:) He is stubborn and adorable, just like his father.;)

What a typical Genetics appointment looks like.:)

Big boy sucking on a grape.

Using the stool from his Physical Therapist to do naughty things.;)

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