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.

Saturday, November 19, 2011

A home away from home.

A home away from home.

We stayed at the Ronald McDonald house Thursday night. Case had a total of 3 appointments, blood work, a sonogram of the liver and a cookie swallow test Thursday and Friday. I was thankful for an inexpensive place to stay but the Ronald McDonald is so much more than that. It is a place with other moms and dads that have felt what we felt. Have cried like we cried. Have heard aweful news. Have heard wonderful news. Have seen miracles and ones that have not. Most of all the Ronald McDonald House is a house of many blessings. Almost every night generous groups, families and even Ben Roethlisberger  donate meals. There are toys and gifts for the children, free laundry facilites and always food and drinks for free. But the blessings I have enjoyed the most are the non meterial ones. Friendships have been one of those nonmaterial blessings. Mostly the one I made with Lisa. You can follow her inspiring story of her son who has overcome a life treating birth  defect and the trials that come along with it here. She is such a dear friend, a fabulous mother and a very strong women. We have become close since our meeting at the RMH. There is something special  about another mom who knows the trials and blessings of giving birth to a special boy. I learned and was blessed more in my stay at the Ronald then I could ever fully make any one understand.  Being there Thursday night reminded me once again what Case was put on this earth for a reason. To touch, to bless, to purely bring Gods love and peace to others and much more.  He brought much peace to the mommies with babies in the hospital and as always was dearly loved by just about everyone he came across in the RMH and the hospital. What a special Case he is.

*Medical update*
Case will have the g-tube placed (and possibly a nison wrap) December 7th (or earlier if there is a cancelation). This will require a 3-5 night stay at the hospital. Case has some trouble when he swallows and will be followed by a speech therapists. They also want us to thicken every bottle for awhile  We are still waiting for the sonogram results on his liver. Previous sonogram results show that his bad kidney is getting smaller (will eventually disappear). The good kidney still shows some dilation and will need checked again in March. His hypospadias repair is scheduled for march 2nd (that is the first of 3 posable surgeries in "that area"). Okay, I think that's it.:)

Pictures from the appointments and Ronald McDonald House.:)

1 comment:

  1. Thanks Liz! It's so good to have each other to relate to. Hope to see you soon...maybe on the 7th. Your photos bring back so many memories...