Friday, September 19, 2008


So we are going to wean study drug and then start Vig AFTER she is off study drug. Pray we don't go status. Sigh. This is a little frightening. He said it will be interesting to see if the study drug actually caused her GM's. Funny since I asked him at EVERY appointment if that is even possible and they pretty much laughed and said no. OMG if that is true I will be a very pissed lady. Not that it matters, what is done is done, but really I have been asking that very question from the start, because she was well off Vig for months and it wasn't until we went off placebo and went on the real deal that the GM's started. Anyway, we are in the weaning process right now. Dr. wants me to cut in half for a week then stop. Ha. I will do this in more like 2 weeks. Maybe 3. I realize he is in the hospital every day, but I really don't like to be there with my daughter as a patient.
So that is the plan. I will of course keep you all updated. I really appreciate all the comments and support you all give us. It means so much to have a little girl that is so very loved.

So let me give you all a Friday funny and post a video of little sis Andi Jane yesterday. We go to an outdoor mall here in AZ that has a water place for the kids to play in. Thursdays are Andi and my day to play. We spend so many days taking Lily to all her appointments I keep Thursday just for us. She is wearing her leotard from gymnastics and there was no music playing, but she just started dancing away and I had to record it. It is poor quality since it is from my phone, but you get the gist of what a crazy child we have! We wouldn't have her any other way!


Carolynn from Western Australia said...


I really hope everything works out for you with Lily and her drug changes. I so hope you can get Lily back to being stable again so that you can al relax a bit more.

Loved the video of Andi, I'm delighted to hear you have a special day together each week, that is so very important.

How is your preganacy going, well I hope. Feel free if you have the time to write to me at my e-mail address ( I would imagine you have access to it?)

Take Care
Lots of Love Carolynn xxx :-)

mommy2twindaughters said...

Hopefully Lily will start doing better with the seizure activity. The video was too cute! I have twins, one is special needs, and I haven't ever thought about having just a special day for the two of sounds like a wonderful idea, I'm going to give it a try!

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