Wednesday, August 02, 2006

Doctor visit...
We went to the neurologist today. Not much to say except we are increasing her Topamax from 60mg/day to 75mg/day. We are also going to decrease her B6 from 200mg/day to 100mg/day for the next 2 weeks. If there is not an increase in seizures over the next 2 weeks, then we will stop the B6. She is STILL HAVING SEIZURES. It has been 85 days since she was diagnosed with Infantile Spasms and about 130 days since the seizures started. We talked a little about what the long term possibilities are for Sophie. I am trying to come to terms with the fact that this is something that we are going to have to deal with for many years to come - whether we are worrying about a relapse or whether or not the infantile spasms will turn into a different kind of seizure. We hope to gain seizure control with Topamax. We hope to gain it very soon. I know I should just concentrate on what is happening today; but, as a parent, I cannot help but wonder what the future holds for my precious baby girl - whether if she will never have another seizure again or whether if she will become an accountant like her mommy and daddy (let's hope not!).

3 comments:

Great Aunt Barb said...

Oh, Elaine, I wish you and Brad didn't have to carry this burden. I certainly wish Sophie didn't have this struggle. And you are so right about worry when you're a parent...if everything were perfect (whatever that might be) you would still find something to worry about. It would be crazy for any of us to tell you to just concentrate on today. I'm sure by now you and Brad could give all of us a lesson in coping.

Keep attacking this like the mother lion you are. All of our prayers are coming your way.

Give that little angel a big hug and kiss from all of us.

Love

Aunt Barb

Anonymous said...

To the world you may only be one person - but to one person, you are the WORLD!!! Little Miss Sophie is blessed to have the two of you for parents! Sara said to Matt the other day that she picked her mommy to be her mommy before she was even born!! Sophie has her mommy to love her & fight for her & teach her like no other mommmy could!! We can't wait to see all of you agian!! Bye for now, Laura

Vivian Liu said...

Elaine,
You, Brandon and Sophie have always been in my thoughts. I can't tell you how touched, inspired and amazed I am by your tremendous courage and love in the past 85 days. Stay positive. Because of you Sophie is growing into a brave, gracious and charming lady every single day. She will definitely make you proud.

Vivian Liu