I’m getting really bad at this….

I’m going to quit apologizing for not updating since I’m unlikely to change that habit anytime soon. Life is busy.

What’s going on here is that we are still trying to regain seizure control and we aren’t there yet. Side effects are getting to be a big enough issue that we aren’t thinking we’ll get there with the current combo of meds. But we aren’t giving up on this combo yet…..we are trying to have patience and give each increase a chance to work.

Maddie is only able to walk with one of us holding her shirt or a new harness we got her. That is partly because she is still having seizures that cause her to fall on her face and partly because her coordination is getting worse and she has an ataxic gait. She is also far more lethargic than she was at lower levels of the Banzel.

I still go to pre-school with Maddie four days a week. We hope we can make some changes to her classroom situation so that I can leave her there for her class each day. It will be a major adjustment (which I know we need) but at this point it is very difficult for me to keep her safe because of the seizures, so I am not sure how to let someone else take on that responsibility.

So we remain hopeful but we know another med change is likely to be on the horizon.

Also on the horizon is Brandon’s departure. Rather than leaving this summer as planned, they will be heading out early, in a few weeks or so. This was not expected, but we are nothing if not flexible at this point. I think the only rule in our lives right now is that things always change.

And now a few pics:

First, of when she was doing really well……

Seizures returned Dec 18th and were pretty mild at first.

Here are a few from around Christmas:

Christmas morning

Christmas Eve

A few from after Christmas:

Having an ambulatory EEG at home Dec 28

More from the EEG

One of our many snow days

More recently, I’ve taken less pics, partially because she has fallen a lot and been cut or bruised which I haven’t wanted to memorialize. But also because I can no longer let her walk alone which makes photo ops hard to come by.

Still smiling after her first ER visit for a faceplant

Healing pretty well

Early February

So that’s all for now. I hope to be able to update next time that we are able to let her walk unassisted again. That would be huge for her.

Love to everyone!