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.

Friday, June 8, 2012

I am the Mom of a Special Needs Child and I Rock.


I'll never forget the first time someone referred to Case as having special needs. I was standing in my kitchen with a dear friend, and she said it. The SN word. It caught me off guard. I really hadn't realized it up to that point and had a little trouble swallowing the word. But then I realized that a special needs child is not a problem, just a little more work than my "typical" children. That's all. He's not less lovable or less important just a bit more maintenance. ;) a few days ago I ran across an awesome blog dedicated to special needs moms and I decided to repost is here. If you have a few free minutes, read this post. You won’t be disappointed!
Here is the blog..

I was inspired, encouraged and moved by this beautiful blog post. I’ve read a lot of posts on special needs parenting and this was my favorite!

Some of my favorite lines:

And no, I don’t mean that you deserve a medal just for parenting your kid. That’s what parents do. We parent. Our kids. So yay, for you cause you stuck around? Hell no.
And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.
What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.


You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.

You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.

You rock because you talk. Because you change hearts and minds and laws.

Special needs moms just rock, and I love that somebody gets us.:)


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