Looking better every day!

Thank you for your concern, Veronica. When I last wrote things were bad and the IVIG seemed to have no effect. Well, within a couple of days after the IVIG Carolyn’s left arm started to get stronger and each day brought a very little improvement but it WAS an improvement. Last week she had her second IVIG treatment. I cant’ believe how far she has come along!

Yesterday was a milestone. Carolyn has been gaining much bettter control of her trunk and upper thighs in that she can “wriggle” herself to the back of the seat of the wheel chair after a board transfer. Well, yesterday she asked me to put her back in bed so I set up the board and told her, “you try to do it on your own” and she did! Not only that, but once she was back in her hospital bed I said “try to push your legs on the footboard and push yourself up to the top of the bed.” That was a little too much to ask since she really hasn’t gotten the strength back in her legs, but she was able to twist and turn and wriggle herself to the top of the bed! You should have seen the smile on her face (and mine)!!

I’m feeling very hopeful at this point. She did go to Dr. Behar and really got no information from him – many guesses – and he recommended going to see a collegue of his in Philadelphia for which the earliest appointment is July 11. Carolyn had a second visit to Dr. Behar this week and he still can’t say what she has (GBS or CIDP) so she’s not going back to him. Brendan is going to call NY Presbyterian hospital to set up an appointment with one of the doctors she has seen on this web site that specializes in CIDP (sorry, I don’t know his name).

It’s been a long, hard road and disappointments galore but I’m thinking we’re on the right road to recovery. She has another four IVIG treatments scheduled in the next four months.:)