Thanks to my friend Kristen, She reminded me of another sad story of a strong boy facing the "ugly demons" of Chiari Malformation. This is a story about Gaby. Kristen and I met Gaby's mom, Beth, for the first time in February, along with our friend Michelle.
Please go check out these links. These links are of children who are trying to beat this ugly disease.
1. Gaby - his page is: FAILUREISNOTANOPTION (Seriously, you need to read this one)
2. Nick
3. Gabe - Riley's buddy who is also a twin.
4. NJ
And last but not least...
5. Riley
When Riley was released from the hospital in Feb. we returned to th RMDH and we met up with Michelle (Gabe's mom), Kristen (NJ's mom), and Lisa (Nick's mom) (YES, we were ALL there at the same time!). Kristen and I were are the opposite end of the spectrum as Michelle, Beth, and Lisa, but it was nice to sit and chat with them about their journeys and to get an idea what other people have been going through.
I should have realized that Frim was AWESOME when I checked in at the the RMDH house the very first time. The lady sitting at the desk asked me if I was here for an appointment or for surgery. I said, "an appointment". She quickly replied back with, " Oh, with Dr. Frim".
Every time we've been to the house, I would have have to say a good percentage of the people there are seeing Dr. Frim. It's truly an amazing feeling knowing that you are being seen by the best of the best for chiari treatment.
Oh, and the other day I was cruising through Barnes and Noble and found myself in the medical isle. I walked past a book called, "the top 100 specialist in the US". I picked it up, paged through until I found NS, and there he was.
Something tells me, we need to stay with this doctor!!
January 2010
14 years ago
3 comments:
It always amazes me the ways that God truly steps in a guides our decisions and makes sure we are taken care of.
My brother & SIL have a 2 yr old daughter with an extremely rare genetic disorder and just happed to be stationed in Alaska when she was born. (Alaska being just 1 in 3 US states that tests for the disorder!)Had they lived anywhere else in the world, they wouldn't have found out she had it until is was too late. Divine intervention, that's what i call it. :)
Definetly I'd say stay with him. It's always best to see the best!
Actually it went really badly... overstimed, since our money tree is dead, we'll have to wait a while before thinking about it again :(
We should set up a play date soon, since the weather is getting nice. It would give an opportunity to talk, and the kids can play... mine are doing more of that now ;) Maybe Michelle and Ruby (and Braden?) could break away for a little too...
Post a Comment