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, July 3, 2013

You tell me, life will not be pain free....

*Warning: This post starts out whiny. So, beware. This 28 year old woman is about to throw a small tantrum...

For the first time in awhile I felt fearful. I was really hoping for a break. For all of the chaos to stop and things to just be "normal" for awhile. I've been told it gets easier, that things slow down in this special needs, medically complex world but so far I've seen none of the sort. When we got Case's CAT scan results Monday, I saw real concern on the surgeon 's face. It is a face I will not forget and is burned in my brain with the other faces of fear and sorrow from his previous Dr.s. You see, in this world you learn that Dr.s don't always have answers and their hearts are as big as their brains. They really care for my boy and are doing everything in their power to help him, to make him better but their power only reaches so far. It's when things get tough that I hear God the loudest...He doesn't promise painlessness or perfection but perfect peace, all I have to do is trust...Sounds easy? It's not. It's then that I remember I've been given a big job. I'm lucky to be Case's mom and can't begin to imagine my life without him. He is more than a son, he's a hero. He saved me from the comfortable world I used to live in...Case has pushed me to the edge of normalcy and beyond. So, as I wait, constantly reminding myself to trust Him with all my heart in the rain and in the storm, I am thankful. Thankful for growth, thankful for truth, thankful for the angel we call Case.

"Come and save me
You're the only source of all the peace I need
Come and save me

You tell me life will not be pain free
What will be will always be in your control
Darkness is light to you
And all you ask me to do
Is trust what you say is true

You are stronger"

*Case had a CT scan Monday, July 1st, 2013 that revealed a Craniosyntosis. He will have surgery requiring his scull being cut apart and put back together piece by piece. 

1 comment:

  1. Praying for God's peace and comfort in your life. He is the creator of all things, the healer of our wounds and sorrows. I pray that God will work a miracle in Case's life and use it for his Glory. He is able and if we as believers don't hang on to that hope, then what do we have? As you say, it's not easy, and God never said that it would be, but he did say he would walk with you every step of the way. God bless you my sister, for accepting this enormous task from God!