Tomorrow is Ben's first neuromuscular clinic appointment. I made a list of questions to ask this doctor. Funny thing is, I don't expect any answers. We have been told that our local hospital is not the place to seek care. We couldn't get an appointment for the better place until April and won't go to Cincinnati until March. I feel like PPMD has been my "clinic". I have learned so much here. I have learned that I need to be the vocal minority to ensure Ben gets what he needs. I have learned that I am stronger than I think, even though I feel I may shatter.

A good friend told me that all the stuff I've gone through was just small potatoes, that it was all just preparing me for this. The Real Deal. He was right.

I can do this. WE will do this.

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Comment by Suzanne Desmond on January 10, 2009 at 10:23pm
Hi Laurie,

I think the first appointment was the worst for me. Glad to hear your over that hump. I had a question, if I may ask, What clinic have you gone to and who is the doctor? My son goes to Strong Memorial in Rochester, NY and his doctor is Emma Ciafaloni. I'm just trying to keep on top of things for my son Francis. Just want to see if I need to make some changes in his treatment. Please don't feel discouraged there really are doctors that really care and want to help out there, we just have to pull up our sleeves and look for them.
God Bless ~ Suzanne
Comment by Laurie Botwin on December 10, 2008 at 7:51pm
Well, one appointment done. Pretty much what was expected, too. The doc was not very....umm....interested. Kind of sad, really. We asked questions about the things we have learned and she kind of shot us down on most of them. Instead of saying "yes, we can try that", we got "that sort of thing is not usually done now". A let down to be sure. Ben was pretty good. We met with the neuro doc, physiatrist, social work and genetics. Got scripts for aquatherapy, hippotherapy and leg splints. Will be getting info on hang tag for car, Y membership, medicaid waiver, etc. Everyone else was great, just the doc was not so good. So we are kind of in limbo right now, waiting for the DNA testing to be completed. Blood was drawn today so we have a few weeks of this. Now, back to our regularly scheduled lives!
Comment by Jennifer Collier on December 10, 2008 at 7:46am
Absolutely!!! You will do this!!! We will do this!!!! I too believe I have learned so much from this community. I have posted a couple of discussions and the response was overwhelming!!! Best of luck at clinic!!!

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