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, May 18, 2013

And I will fight for him...

And I will fight for him.

He is my son. He's different from your son but the same too. He wants what everyone else wants; to live life to the fullest. To be respected. Loved. He deserves all the opportunities your son will have. He was made different. He is fed differently and his body doesn't work like everyone else's but his spirit is bright and his heart (although its full of normal variants and minor defects) it loves and feels love. Not everyone sees him like I do. He's been looked past and denied for the things I know he needs but I will not stop. I will fight and then I'll fight some more. Excuse me, insurance companies, doctors that said he won't live long if I seem pushy but push I will when I need to. You would too if he was your son. You would look deep in his soul and see it shine. You'd know his future holds many trials and he won't be able to play sports or trade treats at lunch and that would break your heart. That would make you want to fight harder to make sure his quality of life is as high as it can be for as long as he lives. You would lose sleep to thoughts of what else can be done and what other roads can be crossed to get him all he needs and most everything he wants because he is your son. He has a piece of your heart. So to you, insurance workers and staff, he may just be a number but to me, he is so much more. I will fight for him with everything inside of me and to those who fight with me. To his nurses, therapists and doctors, you are important. You are a blessing. Together, we can ensure our little man gets everything he deserves. He is our blessing. He is our special miracle. He is worth fighting for!






2 comments:

  1. What a blessed boy your son is, to have an amazing, passionate, dedicated mama like you. Your fight to make sure your son has what he needs is an inspiration. Thank you!!

    ReplyDelete