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.

Wednesday, March 7, 2012

God love ya!

I've come to the conclusion that the schedulers at Pittsburgh Children's hospital have decided to collectively make my life as difficult as possible. I have spent countless minutes off and on the phone for the past three days trying to make 9+ different appointments in the next three months or so. I've been on hold, disconnected, called back, and transferred more times than I can count. I've experienced high call volumes, snippy operators, a "brief satisfaction survey" (yeah, those must be picked at random cause I was OBVIOUSLY not satisfied!! Ha) and one automated confirmation with the wrong time. Granted, all of this was easily remedied with with a glass of wine and more chocolate than mortally consumable.

 I used to have the belief that if I said a little prayer,  asked for the right person, and called when Jesus wanted me to, I would avoid all the chaos. Not true. In the midst of all of this, I have been learning that life is littered with problems great and small. It is how we let those problems affect us that matters. One of my favorite authors wrote it like this:

"Every problem can teach you something, transforming you little by little into the masterpiece I have created you to be."

Today I called the hospital for the umpteenth time to correct a problem they created. Right before I hung up I said, "Thank you so much for helping me. It's quite a challenge some days dealing with 12 + doctors, specialists and therapists for my child with special needs. Sometimes it gets hectic." To that she responded, "God love ya!" and that He does!

1 comment:

  1. So true...Jesus does make our problems go away, he just turns them into something useful or beautiful!!