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, April 20, 2012

A glass half full.

A few weeks back I was told I'm a glass half full kind of girl. I really appreciated that. It was, of course, said by one of the women that help Case along his journey. In the weeks since she said that, I was really examining myself and trying to figure out what makes me the "glass half full" type as to not let it slip away. I thought of Case, and how I know no other ways for my fourth child. Sure, I have three other children all without disabilities or special needs, but each child is distinct. I try to not compare and have only ever known this way of life for our fourth. Case has become a my new kind of normal- so much so that when I'm watching my 6 month old niece SHE seems different. In the back of my mind for a split second I "watch out" for her Mic-Key (which she of course doesn't have). I don't lay her on her back after she eats so she doesn't vomit (then I realize, she doesn't have reflux). I even find myself impressed when she drinks a whole 5 oz. bottle at one sitting. You see, I can't miss what I don't have if I don't want it making me optimistic. I don't want to fix Case, because Case isn't broken. Sure, I have my days. Days when I'm tired- tired of feeds, appointments, and vomit, but to give all that up would also be giving away this very special journey that we as a family are blessed to be on. On those days I readjust my focus. I take it off of the inconveniences and back to the big picture. So here's to all the glass half-full girls [and guys:) ]. Keep up the good work, and know that you are on this road for a reason. The grass isn't greener on the other side of the fence just different.  :)

No comments:

Post a Comment