Tuesday, April 14, 2009

An update

I hope everyone had a happy and blessed Easter weekend. Friday was my first day really off work since January 2 and let me tell you what, I really needed it! Now I just have to wait until Memorial Day which is only 42 days away.

Things in the Beins household since February have been sort of up and down. Pete had a very bad reaction to the Keppra. I think the only way to describe it would be to say it turned him into a sleepwalker. Pretty zoned out and that's just not our Pete (unless he wants to be). I spoke to the doctor and he said that's a rare occurrence with Keppra but it does happen and got him onto something else. Getting off the Keppra took 3 full weeks of reducing the dosage, but it was so worth it! Almost immediately, he responded and is doing so much better. There has been no sign of further seizure activity, so we'll see how quickly we can get him off this medication.

Pete was discharged from TOTS on March 16. We've continued to work on his home program and he continues to do well. Our next stop is expected to be the Challenge program through TIRR, but we're not exactly sure at this point, there may be other plans more fitting his situation. Pete very much wants to get back to work, and continuing with his therapies are the road to that point.

Sometime early this month, he had an appointment with the neuropsychologist to see how he has progressed since his discharge from inpatient treatment. The doc gave him an A+ and said he is at the outside edge of what they had hoped for (but not expected) on his discharge.

Yesterday, we had another visit with the low vision specialist at U of H. Pete has done exceptionally well with the "yoked prism" therapy. The left side neglect is much less pronounced and he's got a much better picture of "where he is" in the world. This is a huge improvement.

I've been asked a few times what can we do for Pete. The only way to help Pete is to encourage him and keep his spirits up. It is very hard for him to see much progress in his recovery, although he has. He is not comparing himself to how he was doing on November 15 when he was released, he is looking at how he was on August 24. It would be very difficult to get your head around the idea of spending a couple of years getting back what you lost overnight.

3 comments:

blueeyedchic said...

I'm really glad to read this update. Seams like things are getting better in your home! I'm happy to read all of the news. Prayers that things keep going good for you honey.
love,
Theresa

Brown Family said...

It's so great to check in and read your updates! You are amazing and I'm so thankful for the progress that Pete continues to make! Give Anna kisses from us!

Kerry said...

We truly enjoyed spending the afternoon with y'all yesterday. Pete has made so much progress and it's all because of his determination and your unending support for your family. Getting back to Aug 24th may take a little while longer but he is surely moving in the right direction. Don't give up, you in the home stretch now! God bless you and I love you.