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, August 8, 2014

....She Laughs Without Fear of the Future.

"She is clothed in strength and dignity and laughs without fear of the future."
Proverbs 31:25

It's a thing. Laughing, enjoying life without fear, anxiety, worry about the future... I can honestly say, one of the hardest things I've had to do on this crazy journey is slowly teach myself to enjoy life free of fear and it's evil twin anxiety. To rely on God's peace, presence and perfection. I AM clothed in dignity and strength. I CAN laugh without fear of the future, fear of the mail, fear the ever heavy financial burden, fear of ever changing insurance policies, denials and limits.......I can laugh because God's got this. Because His ways are far better than my own.....I can't micro manage this. I don't have a magic wand.....I can't change Social Security's policies, government run health care or the fact that my baby still vomits every day....I've tried and I've failed.....What can I change? What can you change in whatever situation you're in? We can change our hearts. We can trust. Trust that everything is going to work together for good. A good that looks different from anything we could ever imagine....... This beautiful boy. His beautiful life. His tiny, scarred and worn 3 year old body is changing hearts and minds. He is teaching me how to "laugh without fear of the future....."  The hard days aren't over. The questions aren't answered. The mail isn't going to stop bringing bad news.  Insurance will disappoint. I'll continue to hand my tiny boy over for endless procedures and surgeries that I never knew existed....I'll still spend nights on hospital "beds" holding the boy that doesn't belong to me, praying that he will one day know a pain free life. There are no magic genies or wands. Just wills. We have the will to change our hearts. To LAUGH without fear of the future......

1 comment:

  1. My heart and prayers go out to you and your family.