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, December 20, 2011

It's not fair.

Case's nurse was in. He didn't gain a lot of weight. His Physical Therapist was in. There are some issues we are working on. They don't seem to be getting better which means I will need to tape his feet and up his legs some. I tried to contact someone about his calories. It didn't work. I felt defeated. I thought to my self this isn't fair. Babies are born all the time with two functioning kidneys. With every thing formed right. They are born and they eat and they grow. It's that simple. I know because I had three of these babies.

I was right. This isn't fair. It's not fair that getting Case to grow is this hard. It's not fair that he has a bad kidney. It's not fair that he has a button in his skin and tape on his feet. It's not fair that I have to work so hard for him. It's not fair that he will have up to four surgeries before his second birthday.

With all that on my mind, I am reminded that this journey is a gift. That no one ever said it'd be easy.
No one ever said life is fair. I am challenged. I am growing. I am loved beyond explanation. I have been given a gift not a problem and even on my hardest days....I am grateful. Oh, and Case...he's perfect.

1 comment:

  1. Hang in there! Praying you'll be blessed with easier days.