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, June 20, 2012

Little man, big day and oh so thankful...

Tomorrow is a big day for our mini-man. It will start around 5:30 am when he'll be awakened, dressed and changed for the day. Around 6am his nurse  he and I will head to Pittsburgh Children's Hospital (Dan works). Once we arrive, we will check in and head to his spinal sonogram (around 9am). They are checking his Sacral Dimple (a dimple at the bottom of his spine) to see if it's tethered and Spina Bifida Occulta. Then we head to an 11am appointment with the surgeon that placed his Mic-Key and did the fundo. Next is an 11:30am appointment with Dr. Rouldolf (his GI). After that is a 1:00 appointment with his dietician, Stacy. Then a cookie swallow study. Just yesterday they added another upper GI. That will be next. At some point we will need to get his blood drawn. We will then check into the RMH (as long as we get a room) and spend the night. The next day they have his GJ placement scheduled and possibly blood work if Thursday is too crazy. Wow. That's a big day for such a little guy! Thank you all for your thoughts, prayers and love for our very special Case!

In my preparation for Case's appointments and his new "accessory" I am overwhelmed with thankfullness. I'm thankful we've got Children's, amazing doctors, God's grace and a fantastic nurse to come along when Dan can't (let me just say.  I LOVE this nurse! I couldn't have hand picked a more dedicated, harder working, just all around wonderful nurse for this little guy and I'm pretty sure she is in love with him too.:). I'm thankful that GJs exist and there is hope for this hurlde. I'm thankful for my "village" and all the help they've offered Dan and I in our journey.

Thank You for everything
Thank You for loving me 

It don't even matter what tomorrow brings
Well I will sing my

Thank You for sun and rain
For what You give and take away
For all Your goodness I will always say
Thank You" 

"Cause life is joy, life is pain
But the prayer on my heart will never change
I say thank You
Oh I'll say thank You"

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