We saw the vision doctor today, and she said that Ben's eyes are functioning as well as could be! She couldn't rule out any cortical visual processing problems but did not seem worried about that.
We also saw Ben's neurologist today. I always leave his office feeling better. He was very encouraged by Ben's development in the past six months since we've seen him last. He told me that the blood levels of his current drug are still very low, and that is both good and bad news. Good news because it means we can go up on the dose of this drug that has given us some hope. Bad news because it may mean that it will be hard to get Ben's blood levels up high enough for it to be effective. But, in the end, it gives us a lot of hope.
Oh, so good to have hope again. And, for some reason, our neurologist just makes it all seem ok. He makes it seems ok that Ben might continue to have seizures. He makes it seem ok that Ben is somewhat delayed - because he sees the progress, not the deficit. I love that.
Thank you to all of you who have emailed me with supportive emails and good thoughts. I know it's hard to read the posts I put up sometimes, and I really appreciate the support. I'm trying to put up the good as well as the bad!
3 comments:
Great to hear the hope again in your voice.
Lots of love,
Brac
Catherine, I have really been enjoying your post, the good and bad. I know you have been through some rough times lately and I just want to say you have done a great job of articulating whats going on for you. Its real and vulnerable but I can here the hope. Its nice to hear hope again. Give Ben a big squeeze for me and tell him his auntie misses him! I love you! xo D
♥ what a roller coaster ♥ Glad you got some good news for a change.
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