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, December 30, 2011

And I've gotta trust You know exactly what You're doing.

During my stay in Pittsburgh (after Case's birth) I heard a song called "This is the Stuff" by,
Francesca Battistelli. It really hit home. It's about all the little inconvinces in life and how they can drive you crazy. I am reminded of that song often. Little things bug me sometimes. Like, when I spend 45 minutes on the phone with Pittsburgh and nobody can find Case's nutritionist. Really, the operator at Children's said there were no nutritionists with the name Jessica in the whole hospital. She must have dropped off the face of the earth. I was frustrated. Or, like the tape thing. Have you ever tried to keep ANYTHING on a one year old's feet?... Or when Case's feeding pump starts beeping uncontrollably at 4am. Or when I pulled his Mic-key button out....I could go on but you get the point. Little things happen all the time and I lose focus of Jesus and His beautiful plan. "In the middle of my little mess, I forget how big I'm blessed." Little mess= inconveniences that I let bug me. How big I'm blessed=Case.

The lyrics:

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

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