Our sweet special boy named Case
Does all things at his own pace,
Would not eat or grow
His weight was too low,
So we prayed and relied on God's grace.
Making him eat was real tricky
So they had to install a Mic-Key,
From a bag and a tube
Come nutrition and food,
But some days it makes him real sicky.
Anomalies, Case has a lot,
Against all odds sweet boy has fought,
He's become a town hero
Regrets, we have zero,
Through this blessing I birthed we are taught.
I wrote this very special poem for our boy with the help of my friend Terri and her daughter. I entered it in a contest to win a pump back pack (see yesterdays post.:)
Thanks to all who voted yesterday. Case did not win but a very deserving little boy did.:) If you haven't liked Pumpkin Packs on facebook yet you can click here. Like it. Look around. Buy an electronic gift card for your favorite tubie or sponsor a back pack for a needy tubie.:)
Speaking of tubes, Case's has helped him get to 13 pounds 12 ounces! He took 3 steps by himself the other day and is super active. Soon he will be 15 months old.;)
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.