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, January 11, 2012

His grace is sufficient for me.


As you may have read on my blog before I feel like when Jesus blessed us with Case He gave us blessing and favor (the definition of grace:). Jesus made Case special for a reason. Instead of fighting this or wishing it to be different, Dan and I have embraced it. With that being said, I'll tell you the truth...filling these big shoes isn't always easy. I have weak moments which sometimes turn into days. These past few days have been rough. The retching continued and became more frequent and Case refused to take anything orally. I felt weak. I ran into some dear, sweet ladies at Panera Bread (two I new, one i didn't) yesterday and had a mini breakdown. I told them the days have been hard and I was tired. They were so sweet and loving. They hugged me. I felt Jesus' love through them and felt much better.  
I have never been a big fan of breaking down. It makes me feel weak. After I left Panera I got the song in my head, "His grace is sufficient for me."  Those are the only words I remembered so I googled them and this is what I found:

II Corinthians 12:9

And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness.

Wow. Just wow.;) Needles to say those hard days are behind me and I am so thankful for God's grace.

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