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.

Tuesday, August 14, 2012

"Just as long as he's healthy."

During my 20 something week ultrasound the tech told us Case was a girl. Around 25 weeks I let the Dr. talk me into an amniocentesis. The results came back xy. When I told one person in particular we were having a boy (not a girl) they said, "Well, just as long as he's healthy." Hmmmm. But what if he isn't? Should I trade him for a "better model"? Should I disregard him and try for a healthy one? No hard feelings, but that comment stung like a bee. And even now when I hear it, I wonder if people even realize what they are saying.  Don't get me wrong, I "get" that we all want our children healthy. I know that we pray and long for our children to live healthy, easy, "normal" lives. But sometimes, God has bigger plans for them. A life with sickness, struggle and special needs is not for the faint of heart, but it's a life chosen for my boy. He is a very special life. A life more than worth living and I am oh, so thankful for him.;)






No comments:

Post a Comment