Thursday, August 02, 2007


The last 3 weeks have been absolutely crazy. It all started on a Monday morning with Brandon, Sophie and I coming down with a stomach virus at 6am in the morning. Luckily, Grandma Debbie did not catch the virus and was able to come over and help with Sophie. The virus put us out of commission for a good week. Then the following Monday, Grandma Debbie, Sophie and I left for Baltimore for Sophie's 3 month follow up visit at Johns Hopkins. Then on Friday we left for Florida and just got back this past Saturday. On Monday, Sophie had physical therapy and her 6 month IFSP meeting. On Tuesday, Sophie had gym class and a dermatology appointment. Wednesday was a fun day and we went and saw Charlotte's Web at the movie theatre with Haley, Aunt Erin, Colin and Nicholas. This brings us to today where I am finally sitting down to update the blog.

Back to Johns Hopkins... The trip went well. Sophie was great, as always. The appointment was somewhat depressing, as always. I hate taking Sophie to her neurology appointments. I always end up asking the questions that never have positive answers. The doctor convinced us to continue with the diet for another 3 months. Why not? What other options do we have at this point? Sophie has already tried and failed 7 different seizure medications. It is all a waiting game now. All I can do is hope and pray that Sophie's seizures will miraculously stop. I say miraculously because none of her neurologist seem to think they will completely go away. They all think that this is something she will have to deal with for the rest of her life. Very depressing!!! I can deal with her developmental delays. I cannot deal with her seizures. It is a daily battle for Sophie and it is heartbreaking to watch. We are trying to wean Clobazam. She was on 10mg a day and we are trying to wean 2.5mg every two weeks. Once we wean the Clobazam, then we are going to add Keppra.

I will post all about Florida in another post. I have a lot of pictures and video to download. Though to sum it was a much needed break from our daily routine and we had an absolute blast.

I will also post later about the IFSP as I have some good news to share.

1 comment:

Kelly said...

You need to check out

Her daughter was diagnosed with IS too, and she has been seizure free for over 15 weeks now. It will encourage you!

Hang in there :)