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.

Thursday, August 28, 2014

Two Cups of Coffee and Three cups of Grace.

"I don't know how you do it!"
If I got a nickle for every time I heard that, I could buy.....well, a lot of coffee....
I don't know what "it" is but I can assure you, I don't do it as well as one may think. Some days, I snap. Some days I cry. Most days I can't even function until I've had two cups of coffee. Honestly, with all that could or might go wrong, feel impossible or "not work" in this insane, beautiful, crazy life.....I barely get through the day without a whole bunch of coffee and even more grace. "By His grace we are healed". I take that figuratively. Yes, I believe in total healing of the body but I don't believe we get everything we ask for. I don't know why, but God chose our son to have Special Needs. He chose this family of six to live, to learn, to fail and relearn but most of all He chose to give us grace and grace unending......For every time I fail, for every time I snap at the kids, get grumpy at my husband and annoyed with the "system" I can go back and fill my cup with Grace. I will fail, and fail again. I don't have superpowers and even though I LOVED when my fifth grader looked up at me the other morning and said, "You really ARE super mom!" shortly after I ran back to the house in my pajamas to get her forgotten lunch box just in time for the bus, I'm not super mom. Truth is, being a mom is enough. I pray I never stop loving without condition like He loves us. That every time I fall, I'll never forget to reach my hand out and let Him help me up. 
We all DO what we can to keep our heads above water and if that means drinking a supersized Monster on my way home from Children's Hospital appointment number one milion, than that's what I'll do. With all of my heart, I believe that we are all fighting our own uphill battles and that we need to cut ourselves some slack or in my case pour myself my second (or third) cup of coffee. Don't get me wrong, I am flattered by your compliments and encourage you to keep 'em coming but I want you to know that I am "normal" just like you....:) One thing I know for sure, is God has blessed me beyond measure with tremendous friends and family to hold my hand (and pour me wine) along the way. I love them more than they know! Even though some days seem impossible and I go to bed wondering if my sweet, tiny son will ever know a life with out pain and hospital stay..... morning always comes with new strength, new grace and fresh coffee.
 

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