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.

Wednesday, October 10, 2012

Of MRIs and blessings.

It's been a busy few days of phone calls, paper work, vomiting and life. Case is still struggling through the night and into the morning. Dan has been working out of town and commuting 2 hours round trip making the days a little longer. Don't get me wrong, I'm not complaining and feel more blessed then usual. It's just been hectic here and tonight I prepare for a long day at CHP tomorrow. Big guy will have his first MRI (he'll be under anistisia for the whole thing) then we'll sign papers and give blood for the Whole Exome Sequencing test with genetics. It will take up to 4-6 months to get results. Tomorrow is a day of firsts and familiars. We've been at this for awhile and yet we're starting a new "adventure". We have no clue what kind of things they'll find with the MRI or the Whole Exome. This. Is. Out. Of. My. Control and a bit out of my comfort zone but it's part of the journey. I'm along for the ride. As I rock him to sleep (right now) I feel him breath and I feel his special. He's different. He's strong, a miracle and instead of fighting our very special journey Dan and I have chosen to embrace it and in turn we are greatly blessed. So, tomorrow as you push though your busy day think of this special guy and whisper a prayer if you'd like as he takes a new turn in his journey.

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