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, May 18, 2012

Happy is as Happy Chooses.

A week or so ago, on our way to the bus stop I was having a discussion with one of my daughters about choices. She was in a grumpy funk and had as I call it "the Eeyore Syndrome.” The Eeyore Syndrome is a made up syndrome that means no matter your surroundings, you are grumpy. "Ho, hum. Nobody cares about me. My life sucks. It's too hot. It's too cold. Nobody loves me…." This particular little girl in our home was just plain grumpy no matter what was going on. She was so grumpy that week that I am pretty sure even if we were in Disney World she would have found something to complain about. As we walked the two block walk to the bus that morning, I told her I could not make everything perfect and neither could she, but what she could do was CHOOSE joy. Regardless of how crappy she felt her life was, she had the power to choose real, true joy. I immediately thought of sweet Case. He is FULL of joy. He is blessed with peace. At his young age he, in his heart, chooses Jesus' joy. He has been pricked, poked, gagged, cut open and IVed. He's spent a collective 45 days in a hospital. Has thrown up every day multiple times a day for months. The list of crappy things he has, does and will endure in his life goes on, but you know what? He is happy. He loves life. If he can choose joy, so can we.:)

I ran across a blog a few days ago that I found to ring true. "15 Powerful Things Happy People Do Differently". I found a lot of great points in this particular post. my favorite point was this:
"2. ACCEPTANCE vs. RESISTANCE.  Happy people understand that you can’t really change a situation by resisting it, but you can definitely change it by accepting that it is there and by understanding that there might be a reason for its existence. When something unpleasant happens to them, they don’t try to fight it, knowing that this will make the situation even worse, but rather, they ask themselves questions like: What can I learn from this? How can I make this better? and they go from there, focusing on the positive rather than on the negative. They always seem to see the glass half full no matter what happens to them."

Throughout our very special journey there have been a lot of "unpleasant things happen to us.” We didn't try to fight these things, instead we have learned from them. THEY HAVE MADE US BETTER. I believe in my heart that God made Case special. I love him just the way he is. I've never tried to fix Case because Case isn't broken, and you know what? I'm pretty sure he feels the same way.:)

Check out the blog post 15 powerful Things Happy People Happy People Do Differently in this blog: purpose fairy. Oh and if you are feeling extra crappy (like I was this morning) you can watch this adorable video. If that doesn't cheer you up, nothing will.:)

A VERY special happy!!

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