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, November 16, 2011

I find I'm moving to the rhythms of your grace.

During my 20 week ultrasound (with Case) the tech said we were having a girl.  We went to our first second level ultrasound 4 weeks later in Johnstown. The doctor started seeing several congenatle anomalies. I went into the bathroom and cried. While in there I very clearly heard the word Grace. I assumed that was to be our babies middle name. I looked the word grace up and found it means "blessing, favor". I got an amnio that day and later was told we were expecting a boy. I was puzzled. I really thought God was telling me to name our baby Grace. That wasn't it at all. He was telling me we were experiencing grace (blessing, favor) and still are.

Dan wasn't able to come with me and Case to the doctors yesterday. I drove to Ebensburg and met a friend. The three of us then headed the rest of the way to Johnstown. While just Case and I were in the car I head the song, "Your Love is Extravagant". I was particularly drawn to the line "I find I'm moving to the rhythms of your grace". It's true . I'm moving right along in the midst of His blessing and favor with beautiful fruit. Sometimes I struggle but with His help I get right back to the rhythms of His grace. It was a peaceful feeling I got. The appointment was fabulously. The surgeon is a gem (sorry, I know that sounds goofy but he was:). We are to call Thursday to schedule the surgery (to place a g-tube). I feel really good, at peace and so blessed by His favor.:)

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