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, August 30, 2012

A new normal.

  No one prepared us for life as parents of a special needs child. Sure, we knew Case was sick. We knew he could die. We knew he'd have to stay in the hospital awhile, but when I took him home I thought things would slow down. I thought he would "catch up" and eventually lead a normal life. Things didn't slow down. He's not catching up, and his life is anything but average. I found myself (after 20 + months) readjusting my expectations and focus. He isn't going to catch up. His tubes aren't going away anytime soon. His left kidney will never get better and for every 1 problem that we've figured out, two more pop up. Someday we will probably get a main diagnosis (syndrome or otherwise,) and it could be terrifying. Please, don't think I'm Debbie downer or a "glass half full" kind of girl. I'm simply stating reality.

 With all that being said, this is our new normal. I'm not mad or in denial, because that wouldn't change anything. The fact of matter is, we are blessed. Blessed beyond measure with a LIVE, beautiful, strong, happy child. All I desire for him is to live a long full life. His life is not typical (nor will it ever be). He will face challenges daily. Yes, there is always a chance for a miracle,but for now, we are living  a new normal and in order to stay sane, we are taking our crazy life one day at a time!:)

My tubbing Tubie.

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