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, June 5, 2012

Oh, the blessings flow...


As I’ve said before, Case has changed me. Yeah, the birth of a child changes everyone, but in my experience the birth of a special needs child changes not only you and everyone around you, but it just changes EVERYTHING. I know things I never thought I’d know -like how many milliliters are in an ounce, what a Mic-Key button is, and that being a special needs mom is a blessing beyond measure not a curse. Since Case’s birth, I have grown and have met more people than I ever expected. I have formed relationships with people that I never would have, if Case weren’t Case. And ,oh, do the blessings flow!! This week has sucked a bit, and my boy is still vomiting a lot. I woke up Friday morning and decided that regardless of what the day had to offer, I was going to remain at peace and count my countless blessings, because they FAR outweigh the trials we’ve been facing. Around 10:00 a.m., I got a call from a new friend. A friend I never would have met if Case weren’t the very special Case that he is. I first met this new friend, Chris, back in May when she called me. I was sitting on the couch and answered the phone. She told me she is with a group called the Burgi Low Life Riders. This is a beautiful group of men and women.  In their “about section” on their Facebook page it says this: Burgi's Low-Life Rider Chapter was created in 2003 by a group of motorcycle riders and a few non-riders, who decided that instead of just taking their usual group rides for fun, they would turn their rides into a charity event.
Their Mission
During the first few years of the organization, the group supported the Railroaders Memorial Museum of Altoona. Then the group decided to move their mission forward and help support children of central Pennsylvania stricken with serious or debilitating illnesses. Chris told me that she heard about us from a lady  who saw Case and our family in Mirror moms. We arranged for her and another lovely lady from the group come to meet us. It was a great visit. All the kids were here, and Dan was off work so she got to meet ALL of us. We were real, raw. Dan and I walked them through Case’s life from pre-birth. We watch as their faces showed emotion and general care for the sweet boy they just met. They enjoyed us so much, and us them. It wasn’t until weeks after their visit that we would find out if Case was picked to be sponsored or not. Those ladies visited several families then took the info to the board, and the board voted. We really didn’t care if Case got picked or not. We were blessed with two new friends and another opportunity to share our great Case. The money would just be an extra special and totally AWESOME gift.
Well guess what! Case is one of the the two children the Low Lifers chose to sponsor! The big charity ride is September 2nd. I don’t have the all details yet, but I will keep you updated as I get the info. Also, you can click here to go to their website and Facebook page.. There will soon be a place where you can click and just donate if you want. Or you can be in the ride for a small donation.:) The money raised will go to Case and the other sponsored child. For Case specifically, the money raised will cover all costs not covered by his insurance,  all the expenses going to and from Pittsburgh every month for appointments and surgeries. And all the other things mini-man needs(i.e. adaptive clothing, special made shoes etc.)  :)  What a fabulous blessing this is! Oh, the blessings flow!!

Every day is a gift from God.
A friend of mine brought this to me at Children's Hospital after Case's birth (Thanks, Chris!). Every time I use this mug it makes me smile. It reminds me that God has given me a great gift. The gift of change. It shows me that even during uncomfortable times He is near and richly blessing me and this very special family.;)

1 comment:

  1. Congratulations! You are deserving of the honor! And I think you need a photo opp. of Case on a Harley!

    ReplyDelete