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.

Monday, November 7, 2016

"Love, you're not alone, cause I'm gonna stand by you."

Dear son,
5 years, 11 months and one day ago, they told me you would die. They told me were broken. I sat with your dad on the wrong side of the desk at the specialty OBGYN's office, hot tears falling down my face praying they were wrong. The words from that day are seared in my brain forever. They changed me. They made me stronger. They hit me like a hard punch to the gut taking my breath away. All along, I knew the words were coming. I knew you were sick but nothing prepared me for the words, "prepare for a burial". Nothing. 
In a way, that fairytale idea I had with my previous pregnancies that everything would always be okay shattered like a piece of broken glass that can't be put back together. 
Every year, around this time I feel it. I didn't even realize why I'd been acting so crazy the last couple days till "Stand by You" by Rachel Platten came on the radio and I cried like a baby. 
Tomorrow, we head to a state 4 hours away looking for answers. I'll take take you, my almost 6 year old, very alive son for your 30 something anesthetic procedure and pray it's not in vein. 
I'll hold the mask over your face until your eyes close and your body becomes limp. I'll kiss your head, whisper a prayer and wait. Maybe I'll wait another almost 6 years for answers, maybe a lifetime but through it all..."I'm going to stand by you. Even if I can't find heaven, I'll walk through hell with you." 
Son, even on the darkest days, I'll always be by you. I'll fight for you. I'll believe in you. I'll never stop loving you. You have made me better. You've shown me a love I didn't know existed and a strength I didn't know I had. 
Thank you,

Mom