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, November 25, 2012

If I could tell me...



If I could go outside of myself, hug myself and tell myself one thing, it would be that's it's going to be okay. I've never met a mom of a child just like Case. I've never had anyone say that they know exactly what I'm going through or what my future holds but some nights I wish I did. Tonight, all of a sudden Case felt hot. I took his temp and it was 103. Because of his kidney problems, this could potentially be a big deal. I'm suppose to call his pediatrician anytime he has a temp over 102. So, of course I called right away and if Tylenol didn't work I was suppose to rush him to the ER. This started to get to me. I started to think that maybe I'm not cut out for this. At the drop of a hat our lives could change. There's no guarantee that anything will ever be normal or easy. If I could jump outside of myself on nights like this and give myself a hug the one thing I would say is that it's going to be okay. That I am strong enough for this. That comfortable is overrated and easy is a a thing of the past. I would tell myself that I'm made for this that I can do this and that just when I think I'm too weak a God given strength will shine threw. I would tell myself that every thing is going to be okay. "How do you know?" I would ask myself. "Because you can do ALL things threw Christ who strengthens you!" would be my answer...




2 comments:

  1. God never gives us more than we can handle... He knows u are exceptionally strong! He blessed you with a 3 great girls and an amazing husband to help you through this, you can't deny the results... Look how far Case has come!

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