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.

Sunday, October 21, 2012

Sometimes, faith is all you got.

I had a bad day Saturday. Sometimes, I have those. Those days where I just want to take a 3 week nap and wake up with less stress. Ha! Dan (my husband and father of our children.;) Got a promotion to assistant manager and transferred to a store about an hour away. So, on top of the phone calls, paperwork, tube feeds, Case's appointments, surgeries, raising all four kids etc. I'm trying to sell a house and move. The stress barometer was way high. I was having one of those "God, I must look stronger than I am...." moments. It seems like problems come one right after another with our special Case and it's hard to watch your child hurt. As I was feeling sorry for my self, I got a sweet message from a sweet man. A man that I admire and hope to get to know better (Hold up. Before you text your friend to tell them I'm considering cheating on Dan I think you should know this is a relative that I'll be living closer to after the move and I'm looking forward to spending more time with him.:). Part of his message said to hold on to my faith cause sometimes faith is all you've got. And with that my focus adjusted. It went off of myself and my stress and onto the big picture. I have faith. Faith that this is ALL part of a big, beautiful plan. A plan that often doesn't make sense. A plain that I only see a small speck of. A plan that is making me stronger. A very special plan.

Calm. I know I'm way behind on the "Photo a day October" but today is calm and this is calm.:)

1 comment:

  1. So true, sweet friend!!! I say all of the time that I know there are moms with kids with special needs who don't believe but I don't have a clue how they do it. Keep on keeping on--holding you in my prayers:)