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, December 21, 2012
Today you are two. It's been two long years. Two years ago today I was laying in a hospital bed with empty arms while you lay in an incubator in a NICU 7 miles away. It felt like 700 miles were between us but I kept reminding myself that you made it. You were alive, which is more than they predicted. I was scared. I was tired. I ached for you. I was beginning a journey that had a lot of bumps and turns, ups and downs and I had no idea if I was strong enough. Even now, sometimes I wonder if I'm strong enough. Now as I sit here watching you bathe, smiling and bright. Tubes draped over the tube, a port in your belly and scares here and there... I look back at a narrow, tear stained, rocky, pot holed, beautiful, bright, long road. This journey is more than I bargained for but has paid me back ten fold. You've brought out the best in me and though you I'm getting over the worst in me. For every one tear you've brought me one hundred smiles. For every sleepless night I've been given 100 joy filled days. You are my sunshine. My rock. My lesson, my love. You've been though more in two years then most old men. Your tiny body has been cut, stuck, poked, prodded, bruised and bandaged. You still smile. You laugh with intent. You bring joy everywhere you go. You are my hero, my angel. Happy two years, big guy. Thanks for being you. I'll love you forever.
I'll like you for always. As long as I'm living, my baby you'll be.