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, October 18, 2011

He was singing and smiling.

I was out to breakfast with Dan and the kids this weekend and one of the servers (who absolutely loves Case) stopped to chat. As she was enjoying Case and high fiving him she asked about his size and it came up that we take him to Pittsburgh Children's hospital often for checkups. She said she goes with her daughter and grandchild who has Autism. The lady said that being at Children's is a great reminder of how good she really has it. Autism is not something her and her daughter had hoped their sweet child would have to deal with but to them it is manageable and could be a lot worse. She reminded me of a night towards the end of Case's stay at the hospital. I was in the cafeteria by myself (Dan and the kids were gone for the week so Dan could work and go to school) and I was feeling sorry for myself. I was tired. Done. I wanted to take my baby and worn c-sectioned body home. During my woe-is-me moment I saw a very ill girl, probably early teen years. She looked close to death as she slouched down in her wheel chair. I looked up to see who was pushing her. I figured whoever it was probably looked a mess. I thought a would see a tired face full of worry and greif. I did not. What I saw was a strong man (I assumed her father) singing. He was singing and smiling. What a humbling experience that was. I kissed Case's sweet face just a few extra times that night and thanked God that all I was dealing with was an "inconvenience".

Here's the sweet boy eating soft candy corn and sporting his new haircut. :)

1 comment:

  1. This made me cry. Those are the things I live by. Anytime I feel like pitying myself over something little I remind myself that I have a beautiful life, a beautiful little girl, and I am just very fortunate and take nothing for granted. My family is forever thanking God for our wonderful life he has provided us... thank you for sharing such a beautiful story <3 you and your family are amazing and I am very lucky to have you guys in my life!!