Our Neurology trip to Albany

On Monday Bethany made our  Neurology trip to Albany. We thought it would be fun to take Jeremiah with us, meet my niece and grandniece at the Children’s Museum but we discovered that it is closed on Mondays, so we decided to go to the NYS Museum instead

Since it is almost a two hour drive we usually plan to arrive about an hour early so that Bethany can eat some lunch in the hospital cafeteria before her appointments. Actually, the food is pretty good in this cafeteria. They offer quite a variety of dishes. I had a Greek salad, Malcolm had sushi, Jerry ate pizza and tried some of Dad’s sushi, and Beth had pizza and a wrap!! Food is very important to Beth especially since she’s been on Depakote! A hungry Bethany is a crabby and uncooperative Bethany! We try to increase the odds that she will behave by feeding her first!!
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Bethany cooperated pretty well in the Doctor’s office. I knew that she had gained some weight what with the volumes of food she’s been eating lately, but I must admit that I was pretty shocked when the scale read 128 pounds!! Her pre-Depakote weight has been a healthy 104 for several years now. She is only a tiny 5′ 2″ so 128 is a bit too much I think. Hopefully when she is totally weaned from the Depakote her weight will go back to normal.

In the waiting room.
In the waiting room.
Dad brought positive reinforcements!
Dad brought positive reinforcements!

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Getting her blood pressure taken.
Getting her blood pressure taken.
Taking her pulse.
Taking her pulse.

We are still waiting for the insurance to approve her annual Brain MRI to monitor any tumor regrowth. After twelve years it would be very unlikely but not impossible. The Doctor is looking into finding a behavioral therapist to address some of her more annoying behaviors. We are keeping her at 10mgs twice a day for Onfi and 900 mgs twice a day for Trileptal. She was never actually on a high enough dose of Depakote for it to have been supressing any seizures so we shouldn’t see any return as a result of taking her off of it. And that’s about it as far as her appointment is concerned!

We drove over to the NYS Museum only to discover that it was closed too.  Apparently, for some reason (most likely financial) all museums in Albany are closed on Mondays!!! Well Bethany had remembered that there was a carousel in the museum so of course she was disappointed. She didn’t really comprehend that the museum was all locked up and closed. She actually handled it much better than we thought she would though. We called my niece and cancelled meeting up because we didn’t want to take the chance that Beth might have a major meltdown somewhere.

We ended up having a very nice time shopping at the dollar store, and Trader Joes. We thought all was fine until about half way home. Beth and Jerry had been having a great time video documenting the ride home when all of a sudden out of the blue she started kicking him. We had to pull over and get out of the car until she calmed down. We put Jeremiah up front and I sat with her the rest of the way home with no further incident. I felt just terrible for Jerry though. My heart breaks for him when she does stuff like that.

Happily playing catch in the Dollar Store.
Happily playing catch in the Dollar Store.
Trying on sun glasses as usual!
Trying on sun glasses as usual!

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Back in the car she took off her shoes and socks.  This is usually not a good sign, but she still looked happy here!
Back in the car she took off her shoes and socks. This is usually not a good sign, but she still looked happy here!

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Here demeanor is changing.
Here demeanor is changing.
The foot comes up to annoy me.
The foot comes up to annoy me.
Getting out of the car to wait out the storm.
Getting out of the car to wait out the storm.
Dad waiting out the storm. If you look really close, you'll see that he has Bethany's sock stuck to his butt!!  Something to laugh about in the midst of  trouble!
Dad waiting out the storm. I made this photo extra large so  you could see that he has Bethany’s sock stuck to his butt!! Something to laugh about in the midst of  all our drana!
Bethany covering her face.  The storm was almost over.
Bethany covering her face. The storm was almost over.

 

 

 

 

3 thoughts on “Our Neurology trip to Albany

  1. Ha, If Tiara only weighed 128 pounds I would be beyond thrilled. She is 5’2 just like Bethany and weighs 170pounds! She was off Depakote 2 weeks prior to surgery and because she was in the hospital her weight dropped to 75 pounds. She has gained 100 pounds in the last year and half since going back on Depakote. Unfortunately it is her best medicine of the 5 she is on. So frustrating! xoxo tiffani

    1. Wow! I know- If they need it they need it. What else can you do? It is really frustrating when everything that helps also has a down side to it. Why is it that we always have to choose the lesser of two evils So far Onfi seems to be Bethany’s Best choice.

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