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, January 6, 2012
Grow, Case! Grow!!
Once Case was born and his health problems were addressed, the only thing keeping him at Children's was how little he weighed. A couple friends of mine (husband and wife) used to say, "Grow, Case! Grow!". Throughout his life that kind of became his chant. Lots of people say this to him often. Like I said before, having the tube in his belly didn't produce the results I expected at first. His gain was slow and he even had a loss since he came home from surgery. This week though, he gained 6 ounces bringing him up to 11 pounds 13 ounces. Awesome!! Getting him to eat enough has been a struggle his whole life. I've had to give this to God over and over. For three months I begged Case to nurse. I pumped, stored and fortified my breast milk until I couldn't any more. The whole time desperately trying to get Case to nurse. He would latch on sometimes and suck a little. But doing that too often would wear him out and cause poor weight gain. Eventually he wouldn't even latch. Finally there came a time when I realized it wasn't working. My milk was drying up and Case would not nurse. This was hard for me. You have to understand I was born a nurser. My mother did it. My sister is doing it. I nursed all three girls exclusively and really desired to do this with Case. There was a time though that I had to give that up. And it was hard. It wasn't that I had a problem with formula. I'm actually quite thankful for it. It's just that nursing was something I enjoyed with my daughters and had planned on doing with my son. Jesus showed me that Case was, is and always will be okay. No matter the feeding issue. Whether it be a tube down his nose. A tube in his belly or him not nursing the fact of the matter is that he belongs to Jesus and always will. I am so thankful for his growth regardless of how he does it how or how quickly it is done. Grow sweet Case. Grow!