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, August 11, 2013

Dear beautiful baby,


One of Case's fans asked a few days ago about what my biggest fear for Case's future is. Honestly, I don't think about it much. I've tried since pre-birth to take one day at a time but I know what it is. My biggest fear for my medically complex, special needs son is that he will feel left out, "defective". I will always be beside him, cheering him on...Telling him that different isn't defective. Different is beautiful!! 


Dear beautiful baby,

After you were born, God broke the mold. No, really. There is no one else like you, anywhere. You were made different. Yeah, different but that's a GOOD thing. You are not weird or odd.  In fact, your differences make you even more beautiful than I ever could have imagined. Not only on the outside but on the inside too. When God put you together he placed your parts with great care and made them super special, kind of like Spider-Man's web shooting wrists and Superman's extra strong arms...You see, beautiful baby, he knew you were strong enough to be made just like you are and not be ashamed. Never, ever feel ashamed to be you. Because, you are so beautiful. And, baby once you start to notice you are different then the rest, hold your head up high because when you, BEAUTIFUL you were made, God broke your mold and THAT is something to be proud of. Don't ever, never ever let someone tell you different. 

Love,

Mommy 

 
 
 
 

3 comments:

  1. He is the sweetest little love ever! He reminds me sooooo much of my youngest boy....they look sooo much alike. I guess that's why your son is so very special....to my ♥!! I just ♡ him!! Thank you for sharing him with us!!

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  2. Thank you for sharing, all you children are beautiful.

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  3. He's so special that Ramsey wore a backpack and cowboy boots all day to be just like him.

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