Saturday, September 16, 2006

Where do I begin...
So much has happened since I have last posted. Sophie has started Kindermusik which she absolutely LOVES. Kindermusik is a class that we go to with other babies around her age and we sing songs and dance around. It is great social interaction for her. Some of the other babies will crawl up to her and she tries to give them "hugs" - more like grabs them and tries to lick them. She is so alert during the class, with her eyes wide open, absorbing as much of what is going around her as she can. I am so glad my sister convinced us to sign up.

I don't think I posted this before... Sophie has a physical therapist and a developmental therapist each coming to our home once a month. The exercises the physical therapist has given us has been incredibly helpful. Sophie keeps getting stronger. Sophie has graduated from doing a lot of tummy to time to working on transitioning from sitting to laying and vise versa. We are also currently working on high kneeling and belly crawl. The physical therapist thinks she is making great progress.

Third opinion... We are going to get another opinion. This time from a pediatric neurologist up in Detroit. Quite a few people from my support group have seen him and they have traveled from all over the world. He knows a lot about Infantile Spasms and has even convinced my local neuro that Sophie needs a PETscan and also to start Vigabatrin (both of which my local neuro did not think was necessary at this time when I discussed it with him). I had to have my local neuro write a prescription for the PETscan. So when I contacted him, he wanted to discuss it with the neuro in Detroit. I am grateful that my local neuro took the time to discuss these things with the other neuro and kept an open mind about everything. My local neuro does not pretend to know everything about Infantile Spasms and is working with us to get the best care for Sophie. But it is up to Brandon and I to push the issues and to do the research on different options for Sophie - which can be very overwhelming at times. I feel the weight of my daughter's world on my shoulders and the decisions that I have to make for her feel so heavy at times. But I feel so fortunate to live in a society that gives me the opportunity to get great care for my daughter and allow us to get a second opinion, or third opinion...

So, we are heading up to Detroit in the beginning of October for Sophie to get a PETscan, 24 hour video-monitored EEG, and a meeting with the pediatric neurologist. I am so anxious to find out what he has to say.

The part of the post that I hate to write... Sophie is still having seizures on a daily basis. We are up to 150mg of Topamax (50mg 3x/day). I cannot wait until she is off that drug - I think we are wasting our time with it. We are waiting to receive the Vigabatrin in the mail (we had to order it from Canada). It can take anywhere from one to three weeks to receive it.


Great Aunt Barb said...

Hope the Vigabatrin arrives sooner than later. I know you're anxious to get started on something other than the Topamax.

Can't wait to see all of you again at Sophie's birthday.

Glad Sophie is enjoying her Kindermusic class. They really enjoy all those new faces.


Aunt Barb

Anonymous said...

That's great that Sophie is having such a good time at Kindermusic class. Glad to hear things are going well with the therapists. Can't wait to see Sophie again, sounds like she has grown so much since the last time I saw her. My thoughts and prayers are with you always.