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.

Tuesday, November 13, 2012

What I would tell you...

To my two oldest daughters. Meredith Rae and Samantha Lynn. This is what I would tell you if I could text you after you got on the bus in the morning...I'm sorry you had to run to catch it. I'm sorry you almost miss it 3 out of 5 days a week. Thanks for being patient with me while I try to split my time and energy a million ways. I'm sorry I can't chaperone your field trips and volunteer at your schools much now that your brother doesn't have day nursing hours. Thanks for stepping up. For helping out. For being wise beyond your years. Thanks for understanding and loving our "dates" even if they are usually just to the grocery store. Thanks for not minding too much when your homework helper is distracted by a beeping pump, vomit and important phone calls. Thanks for growing in wisdom and understanding that different isn't defective, different is beautiful. I wish you could stay home from school and cuddle me all day like Lainey but I know that school is where you belong right now. I love you two. My bigs. My buddies. My sweet, grown up 7 and 8 year olds. You two are very special. Thanks for being great.
Samantha, 7 and Meredith, 8
Sam and mom on a "date".
Meredith and tiny Case.
Samantha and tiny Case.
Momma and "momma" Meredith.

1 comment:

  1. They are great little girls and you can tell how much they are loved, how they are taught to love each other and adjust to adversity. Although your interaction with them can not be the most ideal, it can be sweet, purposeful and meaningful!!