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, August 10, 2012

"I hate delivering these."

"I hate delivering these." Says the UPS man this evening. He was referring to the cases of formula he had just brought with all the other feeding supplies. He went on to say, "I hate delivering these because I know the person on the other end is struggling." I was on the porch with all the the kids. Case was sitting on our bench with his pump backpack just chillin'. Not struggling but thriving. The Ups man realized that he was "the person on the other end". He squeezed his toes (and my heart) and said, "You're pretty cool, guy". Yeah, he's pretty cool. He's struggled and he's overcome. His body parts have/will be fixed but his soul is WHOLE. He's been sick, cut open, pinned down, stuck, stuck, and stuck some more. He's been monitored, tested, and considered deathly but death has nothing compared to his INNER STRENGTH. Today was one of those days. As I sit here rocking him, my clothes are covered in spit, throw up, meds, sweat and tears. But my heart and arms are full. Case had been struggling again.He had a long day. He's been retching and vomiting more and more so his Pediatrician and GI doctor decided to have him x-rayed (in Altoona) and sure enough the tube has (somehow) made its way into his stomach. He'll have to go back to CHP this coming week to get it pulled out and another placed. You see, his struggles don't last long because they are overcome by a peace that passes ALL understanding from deep within him. Today, at the Pediatrician's and the x-ray place I saw love flow from him as he toddled confidently along and people couldn't help but notice. He has a very special purpose!

 Playing in the rain with a shopping bag over his feeding pump-pack.:):)
 One month worth of feeding supplies. I vote UPS sticks a small surprise in deliveries like theses to keep it's customers excited about the UPS truck!!

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