Hi Jane,
Sorry you guys are dealing with this, it's beyond stressful!
I was approved on my initial application for SSDI, however, last year on a review I was determined to "no longer be disabled". That's right, I got better. HA! So, I had to appeal.
Anyway, for both my initial application and my appeal (of the review decision), I used Julie Raysbrook (Disability Advocates for Cystic Fibrosis). I'm guessing you've probably seen her around this site. I think the appeal process for my "cessation" was pretty dang similar to a regular appeal of an initial denial. I was SO glad to have Julie's help, it was pretty nerve racking. We won the appeal on what they call "reconsideration", before having to go before an adjudicator. I was beyond relieved. Basically, Julie just sent them a strongly worded letter and broke down EXACTLY how I met (exceeded) the impairment listing. Then highlighted my PERTINENT medical records (I think our medical records can be overwhelming/confusing to the average Joe Schmo) and sent that with the letter. After that I received a letter saying that I was, after all, still disabled. UGH. The whole thing was a nightmare.
My advice would be to not go it alone. I'd look into either Julie, or Beth Suffian as previously mentioned. I think Beth can only take on so many cases, so you *may* have a hard time getting her assistance. Julie is free and i had a great experience with her both times I needed her!
Anyway, good luck!! And please let me know if you have any other questions I could maybe help with.
Autumn 33 w/CF