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, January 13, 2012

A special kind of love.

Case has a special kind of love. A pure, free love. Since Case was boon he has been showing me how to love without judgement. He has been the cause of hundreds of relationships in my life. From doctors and nurses to moms and dads. One if my favorite friends that Case has brought into my life is a lady named Sarah. I met her at Wal-Mart. I was struggling to hold Case, manage Lainey and put my groceries on the belt. A lady behind me in line asked if I wanted her to hold him (it was Sarah:). I said, "Sure! Just don''t run, I worked to hard for him to lose him now.":) She laughed and asked me about my special Case. We became fast friends. We see each other at Wal-Mart from time to time and recently started talking on the phone. She is one of Case's biggest fans.:) One thing I've been shown lately is that one of the biggest blessings God can give us in this life is the blessing of friendship.

"May there always be work for your hands to do, may your purse always hold a coin or two. May the sun always shine on your windowpane, may a rainbow be certain to follow each rain. May the hand of a friend always be near you, may God fill your heart with gladness to cheer you."
- Irish Blessing

1 Peter 4:8


Above all, love each other deeply, because love covers over a multitude of sins.


Matthew 22:37-39

Jesus replied: " 'Love the Lord your God with all your heart and with all your soul and with all your mind.'  This is the first and greatest commandment.  And the second is like it: 'Love your neighbor as yourself.'




1 comment:

  1. I totally agree. I have so many wonderful new relationships just because of Ramsey, including my friendship with you :)

    ReplyDelete