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, November 15, 2011

"In this world you will have trouble. But take heart! I have overcome the world.”

I will keep in perfect peace He who trusts in me. Isaiah 26:3

I've mentioned this verse before but I'm reminded of it daily. Today I'm taking Case to Johnstown to meet a surgeon about the posibility of placing a G-tube. As I said before, the g-tube doesn't bother me. At this point I'm practically ready to put it in myself.;) Case has lost weight in the past couple of weeks and I know that can't be good. My mind tends to wonder and worry,though. I have an app on my phone that has a short "lesson" each day.  It's funny how perfect today's lesson is. To sum it up, it told me not to worry. Jesus knows this big picture and has already taken care of today and always.:)  It's time to trust God completely. G-tube or no G-tube. Vomiting or no vomiting. Whatever this and every day brings it is God who is in controll not me. Sometimes people confuse trusting God with God fixing everything. I believe everything is going to be okay. And by "okay" I mean that I will blindly trust His will to be perfect. I will alow Him to do as He thinks best although it doesn't always meet my previous standards of "best". After all, Case is God's. :)

This verse is beautiful and sums up everything I was trying to say.:)


"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
John 16:33




2 comments:

  1. When I was about 13 I volunteered at the YMCA to help take care of people that couldn't take care of themselves. It was a 2 week camp for them so they could have fun with other people and just have fun in general. Anyways, it was my job for those to weeks to take care of a little boy "Jason" I can't remember his name sadly :( He was about 8 years old and he was just the most brilliant little kid ever. He hardly spoke and he was such a little kid for being 8 years old. Well, I found out that I had to feed him through a tube in his stomach. Every day when I hooked up his pediasure (pretty sure that's what it was)we would say is was pizza or something, and one day I actually got a pretty good laugh out of him. It made me cry... writing this even now makes me cry. What I'm trying to say is, that little boy left a huge imprint in my life and I have a feel Case is going to do that with a lot of people. The tube for this little boy didn't seem to bother him and us laughing and have a good time every time I fed him made it much easier for both of us. I hope if Case does have to get this he can start gaining lots and lots of weight :) Love you guys! xoxo

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  2. I needed that verse today. Good luck today and at your upcoming appointments too!

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