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, June 16, 2012

I won't give you more, more than you can take.


"I won't give you more, more than you can take. I might make you bend but I won't make you break."- Group 1 Crew.

Sometimes I feel like God mistook me for a strong women. During my pregnancy with Case when it looked like we would lose him, I  told Dan to give God the message that I'm not as strong as I look. We didn't lose him. He was born with many challenges and takes a bit of work, but he is alive and awesome. What I didn't realize then is that God doesn't give challenges to the strongest, most able but to the weak. When we are weak HE is strong. When all is comfortable there's not a whole lot of reason for God. It's the challenging moments, the narrow way that requires faith. Dependence on someone stronger. He is stronger.


 Case, my hero.



Some reminders....:)



3 comments:

  1. You always know how to bring tears to my eyes and make me remember why I am so darn lucky to have you guys a part of my family. Even though we don't see each other as often as I would like, not a day passes where I am not sending love and prayers to your perfectly imperfect family. Liz & Dan, you two are the BEST parents I know... you guys are so very special! I am so proud of you!

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  2. This made me smile, I am getting much better at wearing weakness as a garment beautiful! Our Father is so purposeful, as Case was no accident, neither were the parents (and sisters) chosen to give him to...

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    1. Thanks! It's awesome that such a short post can touch you both!

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