It’s been awhile. I guess we got busy. And maybe just maybe I don’t like to report the fact that there has been no news to update on. Life goes on. Seizures do too. And we have had very little significant change in a long time.
But we have some recent news to update. So here I am.
The biggest news is that this week I left Maddie at preschool alone (with her teachers and other students of course) for the first time. She has the same great teacher this year as she has had since she began pre-K at age 3. Her one-on-one aide is a great woman who was in our class a lot of last year. So we have spent the first few weeks getting comfortable with the aide managing Maddie’s harness (how she walks at school) and learning her seizures and how best to protect her during them. And the amazing result is that I actually feel comfortable leaving her there for 2.5 hours each day. So far, it has gone well, but she has been having trouble staying awake through the whole (albeit short) day. Hopefully that will improve over time.
The next bit of news is that after fiddling around with the same three seizure meds (Banzel, Clobazam, and Lamictal) for an entire year in hopes of regaining seizure control, we have finally added a new medication: Vimpat. We had hoped to wean Lamictal first so that she would only be on three AED’s at a time (who knew that would ever be a goal?) but the Lamictal wean created a new seizure type and a definite seizure increase, so we are trying a combo of four drugs right now. It has only been two weeks, but I am optimistic. Things are definitely not great, but I see signs that we may be having some seizure improvement. So I will be patient. And I’ll try to update y’all on the changes.
There is lots of other news.
First, Brandon has been gone for over 6 months. This is a long deployment and there is nothing good I can say about that. We are very ready to have him home. On a normal deployment, we’d be gearing up for his return right now (they are usually just 7 months). But he is not due back until February probably. So we are just a bit over halfway…….with the whole holiday season to go. I am hoping the holidays will keep us busy so time flies by. But this has been a long one and I really look forward to getting it behind us.
Second, we know what we will be doing next. When Brandon returns from this deployment, we’ll have a few months here together and then we will all move to Raleigh NC where he will hopefully work for three years. And he should not have to deploy during any of that time. He will be in charge of the Recruiting Station which manages Marine Corps recruiting for almost all of North Carolina. It will be a very different job from anything he has done thus far in the Marine Corps. The hours are supposed to be very long with lots of travel. But I think it will be a welcome change. It will be interesting for sure……it will be quite different from base living and being surrounded by military families. So that’s the next adventure.
Third, despite all the seizures, which have remained relatively unchanged since they reappeared around Christmas last year, Maddie is continuing to make very slow progress developmentally. There is nothing fast, but it is clear that she can learn and that the things we are doing to help her are making a difference. She is still cognitively similar to children between one and two years of age, but it is better than last year this time. And she is such a happy child. And so loving. Lately, she asks for hugs all the time. By saying “hug”. Or maybe just “huh”. But it works for me and I happily indulge her whenever they are requested. So because of this progress, she is in school five morning a week and has therapy scheduled three afternoons a week right now. Eventually it will probably be all five afternoons. We have started ABA therapy which is highly successful in children with autism, and is shown to have benefits in kids with many types of delay. So we are busy and doing as much as we can without causing too much stress on a very heavily medicated child.
And finally, part of the reason I have been so busy is that it is race season again and I have been training for half marathons again. I recently ran one (1:53:46) and improved upon my times from last year but not as much as I had hoped for. I’ll run another in November and I will achieve my goal then. Running is an amazing stress reliever for me and gives me a tremendous sense of accomplishment. I recently pushed Maddie in a stroller during a 5k race and ran a time similar to what I ran in cross country in high school. I have a great group of women that I run with who have rekindled my love of competition and who push me to be a better runner. And their friendships make a really long deployment much more bearable. I’d like to give my mom a big shout out also for supporting my racing habit by coming down here to stay with us every time I want to run a race. And as usual, she spoils me by bringing meals and emptying my dishwasher and doing laundry too. I have an amazing mom!
Oops, there’s more…….I guess another reason we have been busy is that we moved this summer. In July, we moved into a bigger house on base and we were very lucky and got a larger home with a waterview. We actually moved ourselves (with the exception of paying movers for 6 hours one day) and I need to give big thanks to all four of my parents on this endeavor as well. Mom was here for the whole move and my Dad was here for some serious manual labor and to deliver a truckload of furniture. Despite it being a LOT of work, we had a good time too. And we really love our house. I will definitely miss it when we move. We chose to take a bigger house even though we knew that we might be moving next summer, but we are really enjoying it and all the space we now have for just Maddie and I. We can’t wait to share it with Brandon when he finally gets home to see it. In this house, we have space to have a playroom for Maddie that has a padded floor so that I can allow her to walk without the harness. I think that is part of why she is improving more…..she has more independence at times and gets to play more freely now.
And now for the recent pics:
Maddie's Marathon 