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.

Sunday, September 1, 2013

Walking through the woods with a blind forld on...

 
Being the mom to a special needs, medically fragile miracle is like walking through the woods with a blind fold on. Most of his doctors are right beside you...blindfolds on too. Helping you find your way and making this place a safe home for your child. Other doctors ran away when they were handed a blindfold..."It's just too much. Too complicated.....too scary" they'll say. "Good luck!" They'll say and run away...
Then there are the other miracle momma's walking behind you. Some have special angles and have been forced to do what you fear most, bury their miracle. Still, behind you they'll stay because together you are a community. You need each other and aren't afraid of a little blindfold... Sometimes you'll feel lost, bruised and broken...but you'll keep walking...As you walk through the dark, scary woods, you'll hold tight the hand of your child and in your other hand is a machete, cutting down the obstacles in your way... You see, having a special child is not a walk in the park. It's a big, scary adventure. One that you didn't ask for, didn't expect but won't ever run away from because the blessings out weigh the heartaches and even when it starts to storm, no one, nothing, not even a diagnosis (or lack there of) can stop you from dancing in the rain. From making this place your home because only you can choose your attitude. There will be detours and road blocks almost every day....but when you look up, a light shines so bright, you can see it through the blindfold. It is then you know, without a shadow of a doubt, you were born for this and you're doing a great job! You may never make a way out of the woods but will make a home in them and peace with your journey.

"Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you're not alone
Cause I'm going to make this place your home"