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.

Thursday, October 3, 2013

Dear Worry.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
—Matthew 6:34
  
Dear worry,

I'm over you. You exhaust me. I'm tired of your constant need for attention. You started to push your presence hard into by being over three years ago when I heard words like, "Prepare yourself to bury your son" and "I just don't know what to tell you....your child was just made wrong...". It was then you started whispering no, shouting, "NOTHING IS EVER GOING TO BE OKAY. Don't you see, the Dr.s don't even think your baby has a chance!" Well worry, you were wrong. My baby is a fighter and my God is sovereign. He doesn't make my life perfect because perfect is boring and perfect requires no dependence on Him. You, worry, are getting old and I'm breaking up with you. Don't tag along when the Drs give my son his 30th diagnosis. I don't need you when I open hospital bills or insurance denials. I've got a bigger, better friend. If I literally need to shout His name to scare you away, I will because I can't live with you anymore. You steal my joy and my peace. You lie and I've believed you for too long.
This life. This special, Dr filled, new and scary life is blessed. I don't want to go back and I will not roll over. I will stand tall and take what I was given and when you worry, slither in I will look at my special son's smile and remember that with great power comes great responsibility.
Sinsey,

The momma of a superhero. 





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