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.

Tuesday, August 20, 2013

Dear Child of Mine


Dear beautiful child without a voice,

I will be your voice. I will not back down, I will not give up, until my last breath...I will fight for you. I will not let a man in a suit, behind a desk tell me what is "medically necessary" for you. He has not cried for you, slept in a chair in the hospital for you or fought for you. He does not know your pain nor has he seen your strength and with all due respect, I don't think he'd care to but I have...and I will continue to because i love you with every fiber of my being. For the rest of my life I will fight for your needs to be met because the sad reality is that children as special as you don't always get treated as the kings and queens that they are. It's true, dear boy and that's why they were given mommies like yours. To be their voice, to fight for meds and treatments and beds....Don't worry sweet prince, I will do all that I can for as long as I can so that your sweet, soft voice can be heard. Even when I'm scared I will stand. In a  court room, in a Dr.s office and in the class room I will stand up for what I believe in. Because I believe in you. 

Love always,

Mommy


 

 


 
 
 
 

Sunday, August 11, 2013

Dear beautiful baby,


One of Case's fans asked a few days ago about what my biggest fear for Case's future is. Honestly, I don't think about it much. I've tried since pre-birth to take one day at a time but I know what it is. My biggest fear for my medically complex, special needs son is that he will feel left out, "defective". I will always be beside him, cheering him on...Telling him that different isn't defective. Different is beautiful!! 


Dear beautiful baby,

After you were born, God broke the mold. No, really. There is no one else like you, anywhere. You were made different. Yeah, different but that's a GOOD thing. You are not weird or odd.  In fact, your differences make you even more beautiful than I ever could have imagined. Not only on the outside but on the inside too. When God put you together he placed your parts with great care and made them super special, kind of like Spider-Man's web shooting wrists and Superman's extra strong arms...You see, beautiful baby, he knew you were strong enough to be made just like you are and not be ashamed. Never, ever feel ashamed to be you. Because, you are so beautiful. And, baby once you start to notice you are different then the rest, hold your head up high because when you, BEAUTIFUL you were made, God broke your mold and THAT is something to be proud of. Don't ever, never ever let someone tell you different. 

Love,

Mommy