I can't believe it has been a whole month since I posted. I should really post more often. Let's see...
We went and saw the neurologist last week. He thinks that maybe our medication increases have been too conservative. We keep getting control only to lose it again. So, we have been raised up to 200mg of Zonegran once daily. Hopefully this increase will do the job. If we lose control again, we will have to add another medication into the mix. We have been soooo fortunate to have no side effects with the Zonegran. It makes adding another medication into the mix kind of scary. Hopefully we will do ok with this increase.
I am so excited to tell everyone that I am going to be able to go to the International Rett Syndrome Conference in May, in Chicago. I'm very excited. The waiting is hard, but will be well worth it, I'm sure. Then of course in August we will all be going to the North West Conference. This year we only have to drive to Federal Way (about 1 hour.) If you've been around awhile, you'll remember our very first NW Conference in Portland two years ago. The train ride home was not pleasant. Last year we went to Seaside, OR and my mom drove. This will be nice to just go to Federal Way.
We continue to make choices for Caitlyn regarding what will happen next year. We have decided to pay the higher rent where we are and not move. This means that Caitlyn will go to a school that has free full time kindergarten! We are excited for that, but must decide now if we want her sent across the district three days a week for an extended day class for kids with Autism Spectrum Disorders. She is in this class for preschool this year and we like it, but it is just the next room over. If we did it next year, she would be pulled out of her full day kindergarten class and bused across district for the ASD class. I know that we will probably have to deal with her being teased at some point, but I want to do what I can to limit the opportunity. We are leaning towards not doing the ASD class because having her taking out of her regular class for three whole afternoons would draw too much attention to her. She will be pulled out for therapy and we don't know how that will work. Her Physical Therapist said that she will have to be bused for PT. I will ask that if she is going to be bused any way, we want her doing Aquatic Therapy. We shall see how that goes over.
And the most exciting news we have is that we were approved for a grant to buy our stroller!!! To refresh your memory, this is the one we applied for. It might have helped that we know the family who started the foundation, but nonetheless, we are very thankful to be getting this stroller. I will post pictures as soon as we have it.
Subscribe to:
Post Comments (Atom)
1 comment:
Rebecca,
I can't wait to meet you in May...it won't be long now! (Although, I feel like we have been friends for years!)
You will LOVE the stroller, we sure do!
I hope that everything goes smooth for the Kindergarten transition. I am a worried mess about preschool -I Can't imagine the fears you are having about kindergarten! Keep us all posted! (And be sure to bring lots of pictures to Chicago!!)
Post a Comment