Posted on December 17, 2008 at 11:00pm
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The very first thing our family did with PPMD was go to Washington DC in February 2001. It was 4 months after Michael was diagnosed with DMD. We were still in somewhat of a shocked phase not knowing what to do or where to turn. Wow, what a trip! There was virtually no federal funding for DMD research but the MD Care Act was just introduced and we were there with about 75 others to make our case. It was such an empowering feeling to be able to do SOMETHING. It filled us with hope. There are…
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Jake is doing pretty good. Had the heel cord lengthening last Nov on one leg. Was hell getting through the recovery but he can walk much better. We took his deflaz dose down from 39 mg to 30 mg and that has helped with side effects he was having s.a. headaches hyperness etc
When do you back to Cinci?
I finally have the chance to catch up and say how much John and I enjoyed talking with you and your husband at the conference. I would like to come to a NJ FACES meeting, and just joined the group. I remember your mentioning that Mike's mom might be willing to exchange contact info. with my mom from a grandmother's perspective. My mom had expressed interest in that. If she is comfortable, my email is laurenandjohnfritz@juno.com. Thanks again for helping us get out bearings - the comference was really so helpful. Take good care and enjoy the rest of the summer, Lauren Fritz
I noticed you are not yet a member of NJ Group (you should join). I sent an email about Wash DC. to the group, but have not heard back from anyone yet. I know you always have a lot of people go to Wash. Do you or anyone else need a roommate. I sent the message below to the NJ Group.
I booked my hotel room in Wash DC. I'm not sure yet if my husband will be attending. If he is not, I would love to cut down on expenses and share a room with someone (female of course . . .)
Did anyone else make plans yet? Maybe we can try to coordinate carpooling or Amtrak. The cutoff date for making the hotel reservation is Mon-Jan 12th. Who's all going?
Beverly
Bedminster
Kim
Ang :)
Thanks for telling me about taking extra Vitamin D. I've forwarded this to Heather so she can read it because I don't know how much calcium the chews have in them.
Jacob is always constipated and says his rear end is sore. Have you dealt with this yet and what do we do for it?
I've suggested that they keep taking Jacob to Cinn at least once a year because Dr. Finkel does not seem to be up on the newest things or else just isn't telling us.
His last visit a few months ago he told us that steps are fine for the boys even though most people don't think so!!!! I don't know what to think of him anymore. There's always a problem with them not remembering we have an appointment, losing Jacob's records, trying to get a call back, etc but they are the closest to us if we would need them in an emergency.
Any suggestions would be greatly appreciated:)
Steve Beaulieu
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