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.

Friday, March 15, 2013

Crooked paths.


"I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine"

I've been traveling a crooked path and all I see I one step ahead. This land can be weary but blessed. I am overwhelmed with the amount of blessings Case and his story bring, spiritually and monetarily. As I was speaking to his Genetic Councilor today (yeah, we chat on the phone, lol) I started thinking about what a special Case we really have. Noone, not one of his doctors, nurses or therapists have ever met a child just like Case. He's complicated and so far, un-figured out. It's been a long, exhausting journey and its only just beginning. But for every complication Case has received a hundred blessings. He was sent to us to show us how precious life is. He's opened my eyes to a huge, beautiful world of people who have hearts of gold and love that reaches far beyond their 4 walled homes. I am in awe of the dedication all 20+ doctors, therapists and specialists have for Case. They won't give up on him and will help his father and I give him the best quality of life possible. You see, Case's tiny body is full of complications and although he's beat the odds and appears "normal" he's got a lot up against him but he's always smiling. When most complain about the weather, Case gets poked, prodded, cut open and tube fed without complaining. He see the good in a world full of bad and he brings out the best in us. If we all could be just a little more like our special Case, the world would be a better place.:)




Love this song.:)

No comments:

Post a Comment