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, June 27, 2013

"Oh God, I'm holding on to you."

"Well I tried to be everything I need
But a broken heart was all that I achieved
Still I don't understand
Why it's taken me so long to know You never change
Your love remains
Oh God I'm holding onto you"

When nothing stays the same. When tomorrow is always different than I've planed, I'm holding on to you. Oh God, it's out of control. I never know what Case's Dr.s are going to say or what his insurance is going to deny next but I know you are near. You've picked me for a very special job and everyday I find myself needing to let go...remembering that You know better than me. I never could have planed all this. I never would have planned all this but it's because I never knew how full my heart would be once I became this mommy you've called (more like drug me) to be. I  am thankful. I am humble. I will fail more than I succeed. To You be all the glory. Without you, I'd be nothing. Thank You for being by my side for every diagnosis, every tear, every failure, every headache and every blessing. Because, without the rain there would be no rainbow. Thank you Lord for the Very Special family we have become. 

No comments:

Post a Comment