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.

Sunday, October 30, 2011

Sometimes I forget.

I was laying on the floor playing with Case. Kissing him, hugging him, tickling him. Just loving on him. I forgot about the last time he ate. How many calories he had so far. When he's going to eat again. The possibility of a G-tube. When OT and Pt are coming to the house. I wasn't thinking about Pittsburgh appoints or the next time he'll go to the peditrican. In that moment it was just me and him. Nothing else mattered. He is the sweetest boy.

Help me Lord to forget more. To trust you completely.

You will keep in perfect peace him who trusts in You.
Isaiah 26:3

1 comment:

  1. I wish the option to "like" certain posts was available. Our sons are not too far apart in age (JJ arrived March 8), and my little man doesn't have nearly as many challenges, but I can relate to needing to trust more. Thanks for sharing your heart, and letting God encourage others thru you.