Well, Uncle Mack is back on the road. I just got to Colonial Williamsburg for my friend Amanda Whipkey's wedding. It should be quite a good time, but I'm missing Gracie. :(
A couple of next steps for Gracie:
First, she qualifies for some sort of speech therapy due to her condition, so we need to get on that stat. If anyone knows ho this works, or how we should get started, we'd love some assistance.
Next, we need to start working on getting housing lined up for Sarah at Ronald McDonald House. I imagine we need to start pulling any strings we can to get that lined up for mid-April.
So, Mandy has been putting her epidemiology hat on and has a theory on the seemingly high incidence of Hurler Syndrome in Northern Florida. It happens all over, but it sure seems like there are a lot of folks in that area who are affected. Thoughts?
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In Illinois the program is called 'Early Intervention' for children from 0-3yrs old, but I'm sure Gracie's pediatrician can refer you to the right people for speech therapy.
As for the Ronald McDonald House, as long as you have been there once, all you have to do is call them and tell them when you are coming back. You will still have to call the day of your arrival to tell them you are in the city and find out where you are on the waiting list. If you call them now though, they can call the transplant social workers and verify your information if they need to. Even with the calling ahead, we spent 3 nights at the Days Inn during work-up week for Lauren until there was room at RMH.
Hope that is helpful.
Thanks Kindall! You are definately a wealth of info for us! :) Gracie has an appointment at her Pediatrician's this coming Thursday. I'll ask him about the therapy.
Gracie misses you too, Uncle Mackie. You'll be glad to know that she practiced her piano tonight. :) xoxox
Every state has a 0 - 3 early intervention program that provides therapies (e.g., speech, OT, PT) for free or at a reduced cost. Here in Louisiana, you can contact the early intervention program directly or get a referral through your pediatrician. I think it varies from state to state, but I've gotten fantastic therapists for my son through early intervention. Sometimes there are waiting lists, so try to get this started right away. (Don't let your pediatrician tell you to wait--which he might, since Grace is so young.) I would also request a full evaluation to see if she will qualify for OT or PT because in my experience, the earlier you start the better. Good luck!
Mackie in Wmsburg, my favorite place...hmmph! Sarah, wonder of the "can" lady, you know who I mean can pull strings at McDonald house since she raises funds here. Worth a shout out to her to ask. You never know.
Let me add what I do know about No Fla and the high incidence of disease. This area has the highest birth defect rate in the state, along with one of the highest cancer rates. There is one county specifically that has the highest birth defect rate, it is not ours but is nearby. Since I can't recall which of the two it is, I am reluctant to write in here, in public domain. Both high incident rates fall into the "unusual" category because demographically we should not be in that bracket. I have heard various reasons attributed to the suspect causes, Mack and most were felt to be environmental. You can take that statement for what it is worth. I could add more detail, but once again, it's speculative, not improbable, but speculative.
Can e mail you with more detail if you are interested.
Wow. That' fascinating info. I wonder what the environmental factors are
I know environmental factors are causes of a great number of diseases. However, it just isn't possible that they cause MPS. One factor that could account for a higher incidence of Hurler's Syndrome in a concentrated area would be shared genes by common ancestors who settled and stayed in the same area.
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