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.

Wednesday, January 30, 2013

Just Enjoy the Show...

Ready, set...stop thinking!

I've been told I think too much several times, by several people. I'll play scenarios over and over in my head before they even happen. Maybe it's because I've got a lot going on... Selling a house, buying a house, Case, endless paper work, three other kids..etc., etc. Maybe it gives me the illusion that I have control of this crazy life of ours. I don't know why I do it but I know that it will surely kill me or send me to an insane asylum. This past month I've been determined to think less and pray more. To step back and "just enjoy the show." Sure, I can't just "give up" or stop caring for Case, the girls..etc. but I can and am (more and more) letting go of the millions of things that I have no control over.  When the thoughts take over and I feel helpless it's important to give them up. Out loud even, I surrender them to the One that "directs the show". Sometimes, I want my money back (lol) and think, "this is more than I bargained for!" but this is the life that was chosen for me and all I can do is go with the flow...(if need be) I'll know when to make a ripple but It's time to stop to over thinking and under trusting. I choose to give thanks in ALL circumstances for this is His will. Worry, anxiety, the need to control uncontrollable circumstances is a lack of trust. When I'm feeling that way, it's time to readjust my focus to the one who made me me and Case Case. For He knows the plans for us and they are good. He sees the big picture and has gone before me. It's time to just enjoy the show!

"I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I don't know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it goAnd just enjoy the show

Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.-1st Thssalonians 5:18

Deuteronomy 31:8

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

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