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, September 4, 2012

"Everybody needs a little help sometimes".

My daughter was watching "Doc McStuffins" (a stupid preschooler show) and I over heard, "I guess I always thought I was the one to help everyone else. Not someone that would need help. Everybody needs a little help sometimes." This was said by a broken Superhero toy that  "Doc McStuffins" was fixing. I heard this the day after Case's big benefit ride and boy did it apply to me! Sometimes, we need help! Sometimes, my floors need scrubbed or I don't feel like cooking dinner. Sometimes I feel so emotionally drained that my body aches and sometimes, we feel finically drained from Case's expenses. That's where the angles dressed up as Burgi Low Lifers stepped in. The ride was a huge success! Hundreds of people came, rode and partied in honor of and to support two amazing children that have and will endure more pain and sickness then any little kid should. We had some family, and some friends that have become family come out to support the wee boy. We also made lots of new friends. Dozens and dozens of friendly smiling people came up to us to meet our mini hero. They wanted pictures with him and of him on their motor cycles. He walked through the big crowds with his head held high and people moved out of his way like he was king of the cyclists!:) This whole experience was surreal. From the phone call saying he was picked to the big event. We felt a love and concern from people we never new before. Also, I got quite a few new Facebook friends;). I had several people look lovingly with concern in their eyes at me and say they wish for the best or they hope things get better. It was wonderful to see how much they care. Someone asked me how much the Low Life Riders get paid for this. The reality is they get no monetary payment. They "do this for the kids" and obviously love it! They work their butts off for little kids they never met and for that I am forever grateful. We don't know yet how much money was raised. Any amount would be helpful in caring for this special boy. The truth is, we acquired more then money can buy. We made new friends. Had our old ones standing by us, loving and supporting us. We shared a special story and our hearts grew with hope. Thank heavens for our very special Case.:) To read my friend Lisa's thoughts on the big event (yeah, she and her family are cool and drove like 4 hours round trip to support us:) click here.

Awesome video of our sweet boy.:)

1 comment:

  1. We all need a little help from our friends...I am glad Case has makes A LOT of them!! This morning I went to the bus stop and a neighbor had the orange shirt on with wings. Elise and I noticed and asked if she rode. She said no but that she serves food for the party and has for the past couple years. I thanked took a lot of people to make that happen and a little help from above!!