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, August 15, 2012

In the middle of my little mess...

"When he gets that tube replaced, he'll feel like a new man!" -Direct quite from his older sister, Meredith who is 8.:)

Mr. Tough-as-Nails is having another procedure today. His GJ has worked its way out of his intestines and into his stomach. No one knows when this happened but we found out via x-ray on Friday. Since Friday he has gotten progressively worse. He is retching and vomiting a little more each day and is experiencing pain. Yesterday morning and afternoon he was pretty uncomfortable. He pointed at his tube and said "ow" a few times. It is important that we get this tube into the right organ for obvious reasons. So, today at three he will head to the IR at Pittsburgh Children's Hospital and will come out a "new man" . Little man has been through a lot in the last 19 months and it seems things aren't slowing down. The pediatrician is adding another specialist for his feet and it seems little man takes one step froward and two steps back. Little inconveniences pop up quite frequently and he handles them with grace. Sometimes "in the middle of my little mess I forget how big I'm blessed" but am quickly reminded by his glowing smile!




I lost my keys in the great unknown
And call me please 'Cuz I can't find my phone

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

45 in a 35
Sirens and fines while I'm running behind
Whoa

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world

Oh Oh Oh

This is the stuff that drives me crazy
This is the stuff
Someone save me
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
And I've gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

Oh Oh Oh Oh
This is the stuff You use 




1 comment:

  1. I'm praying, Liz! This song often helps me to keep the challenges life throws at us in perspective too!

    May the joy of the Lord be your strength!

    Suzy

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