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.

Tuesday, April 15, 2014

What Doesn't Kill Me Makes Me Stronger.

"Your grace abounds in deepest waters
Your sovereign hand will be my guide
Where feet may fail and fear surrounds me
You've never failed, and You won't start now"

Two weeks from today I will be in the Pediatric Intensive Care Unit at Children's Hospital of Pittsburgh. I'll be holding a tiny 3 year old with a hole in his scull and a catheter jammed in to monitor Increased Inner-Cranial Pressure in his brain. I'll be praying, wondering, maybe crying or laughing. I won't know if the following Friday I'll be handing my precious 4th born to a Neuro and Plastic surgeon for an 8+ hour scull, brow bone and fore head reconstruction surgery with.....I won't know how that is going to go if it does happen. I will have to trust, continually turning my anxious thoughts over to a sovereign God believing he will never give me more than I can handle and by that I mean what doesn't kill me makes me stronger.......
Before the birth of our son all Children's to me was a hospital Giant Eagle occasionally asked me to donate to. I usually said no do to lack of time and the inability to spare a few dollars. Fast forward 3+ years and Children's is so much more. It is where I have been broken and rebuilt. It has saved and enhanced my child's life in ways I never imagined. It houses some of my closest friends and second family members. It has become a mission field of sorts where I have been pushed to the edge of my faith. I never considered myself talented and all I wanted to be as a child was a mom. I loved babies and pretended like I had 8. I was the last one picked for dodge ball at gym class, can't carry a tune in a bucket and used to think God desired his people to beable to serve him with the visible talents he gave them.... I was wrong. I had to dig to find that talent doesn't always look like a beautiful singing voice or a pretty painting. We blossom where we are planted and I believe that Case is the exact child God planned for our forth. Not broken, not a mistake but a beautiful opening to a world of unknown. A spirit full of so much love and mystery is glows!
So, when I start to feel like God mistook me for someone stronger, that I can't go on any longer I will give thanks in all circumstances; for this is God's will for me (for Case, for our entire little family) in Christ Jesus.

"Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger"

"I will call upon Your name
Keep my eyes above the waves

My soul will rest in Your embrace
I am Yours, and You are mine
I am Yours, and You are mine
I am Yours, and You are mine
I am Yours, and You are mine"

Please take 5 minutes to watch this music video. The song has become a theme song for me lately and holds many blessings. <3


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