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, July 17, 2014

Amazing Case.

Amazing Case. 

Long time, no blog....Sorry. Things have been busy, I guess.;) More "normal" than ever.....Case has had a few weeks off from...everything....No therapies....No school....No appointments...Just fun and summer until next week. 
He's transitioned from being fed 21 hours a day via feeding pump to, 8 separate, 10 minute feeds through a tube and syringe a day and 8 hour pump feeds at night. HE LOVES BEING FREE, free for his back Panek, free to He's so, amazing....The biggest struggle he's having is daily vomiting. The same vomiting that's been going on for years....I pray for grace....I pray that soon, really soon this will be corrected. 
Today, Amazing Case went into a bouncy house for the first time. I was so nervous. Nervous to let my 3 1/2 half year old go in a huge house for bouncing...Not because I'm over protective or a worry wort but because he is fragil. He, not too long ago had his head cut open, movement makes him sick and he has brain conditions that could be hurt by lots of jumping, etc. he barley jumped....but boy did he SMILE! There is nothing a mom of a special needs child loves more than watching him do "typical" things. He. Is. Amazing. 
So, as we prepare Amazing Case for his 10th surgery (August) and 4th MRI (September), I remember that everyday is a gift and sometimes, we need to let go.....
Thanks for loving Case. Thanks for being loyal. We ❤️ You all. 

If anyone would like to purchase a Case t-shirt, here is the link.:)

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