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.

Saturday, November 10, 2012

Today I am thankful for...

With all this thankful talk on Facebook, Twitter and tv I starting thinking about my journey. Today I am thankful for my very special journey.
As I was reading the thankful statuses on Facebook yesterday evening, one in particular caught my eye. It was from a lady who is suffering greatly physically from a serious illness. She opened her heart a bit and for that I am thankful. She expressed almost exactly how I feel about the journey I'm on. You see, I've been having some long days, some exhausting, hard days but they do not steal my purpose or my true and deep joy. At the end of my day I am thankful. Thankful for all the goods. Thankful for the "not so easies", thankful for the gifts along the way.. No, I don't want Case to be sick, vomiting or uncomfortable but for the joys, the differences, the journey I am thankful. You see this lady has a big heart for the Lord. she knows his love endures forever. She is finding her strength in the journey and joy along the way. I admire her strength and her focus. During this journey of mine, my biggest prayer is that God's will be done, regardless of what it looks like or how uncomfortable it is. I desire His good and perfect will in every aspect of this ver special journey. I am also thankful for all of you.:) Thank you for following, praying and loving our very special Case! Thanks for being a special part of our journey.:)

The will of God will never take you...

Where the grace of God cannot keep you
Where the arms of God cannot support you
Where the riches of God cannot supply your needs
Where the power of God cannot endow you.

The will of God will never take you...
Where the spirit of God cannot work through you
Where the wisdom of God cannot teach you
Where the army of God cannot protect you
Where the hands of God cannot mold you.
The will of God will never take you...
Where the love of God cannot enfold you
Where the mercy of God cannot sustain you
Where the peace of God cannot calm your fears
Where the authority of God cannot overrule for you.
The will of God will never take you...
Where the comfort of God cannot dry your tears
Where the Word of God cannot feed you
Where the miracles of God cannot be done for you
Where the omnipresence of God cannot find you.--------Author Unknown

No comments:

Post a Comment