Our Summer

I’m not even sure where to start…..it’s been so long since I updated.

The results of the MEG (brain scan) are in. Nothing new or helpful. Seizures seem to be coming from everywhere and there is no evidence that she would be a candidate for surgery at all. So that door remains closed for her. We continue to hope that medication alone can control her seizures.

We have started a new medication called Clobazam. That means she is on three seizure drugs right now, Keppra, Lamictal, and Clobazam. This is a place I never wanted to get to……three seizure meds at one time. But our Neurologist convinced us that because things are really bad seizure-wise, that does not mean they cannot get worse. And every time we wean something, things do seems to get worse.

So we are trying this new drug, Clobazam, another non-FDA approved one that we have to get shipped from Canada. It is a benzodiazepine, so in the same class as drugs like Klonopin, Valium, and Ativan. Which would typically make someone sleepy. In fact, that was the side effect we were most heavily cautioned about. Of course, Maddie does things her way, and this med makes her hyperactive and messes with her sleep. I’m pretty sure I have mentioned just how terrible her sleep cycle is already on this blog (not certain as I am always tired…..). So the fact that she is now sleeping even less is not cool. And with each dose increase (we’ve now had three) her sleep gets extremely crazy for a few days. I am lucky to get 4-5 hours per night during these times. The hours I do get are never all in a row and are punctuated by seizures and other miscellaneous wake-ups. And while that may be enough for some folks, it is not enough for me. Especially given that I spend every minute awake trying to entertain (and keep safe) a crazy kiddo who is hyperactive and still having seizures throughout the day. Exhausting.

We have also recently begun a trial of a medication that is supposed to help her sleep. So far it has not been incredibly helpful. It does put her to sleep, but then her crazy sleep cycle kicks in and wakes her up. So it has not proven to be much help yet.

We are still waiting on her new bed. A few months back I commissioned a guy to custom build her a bed that we can make safe for her. After struggling with insurance denials, we just decided to do it ourselves after losing the appeal. Unfortunately, he has still not completed the project and I am beginning to question my own judgment on this decision. Given all our sleep problems, the idea of having a safe place where we can put her down at night, where I am not constantly fearing she will dive over me onto the hardwood floor, would really be a blessing. Hopefully soon…..

Anyhoo, enough of my whining……there are some good things. We are seeing some seizure improvement. It’s hard to tell how much because she has some new unusual behaviors that I suspect may be seizures. So while we have gotten rid of some, we may be adding new ones. We’ll probably have to have an EEG soon to see what is going on. More fun.

I can’t tell you how she is doing as far as her leukemia is concerned since we have not checked counts since mid-June. We have an oncology appointment this week so I’ll be heading to Charlotte as soon as I’m rested enough for the drive.

We’ve had lots of fun at the beach this summer despite all the weird stuff that makes doing anything normal difficult. I will attach some pics at the end of our last day there to show off how beautiful she is.

Also, I have found a great way to keep myself sane in the midst of all this insanity. I run. And I love it. I will run my first half-marathon in December and I’m excited because my brother, my Dad, and my stepmom will run it too. I am running 30+ miles a week and have been for months. It started as a way to stay busy while Brandon was deployed and has become an important part of my daily routine. Brandon and I enjoy running together and usually try to run at least a few times a week together. It’s also nice to run with him because he pushes the stroller making my run a bit easier 🙂 My goal is to do a few half-marathons and then try to train for a full marathon next year if I can make time. I even enjoy the long runs, but I feel bad putting Maddie in the jog stroller when I run for over an hour.

Sorry for the length between updates, but frankly, it just isn’t that much fun to sit down and write out how things are not really improving for our amazing child. We have worked hard and are all exhausted, but there are not really any changes for the better. Soon she will be four and we aren’t likely to have her walking or talking then. It is quite hard to accept that this is just how life will be for her.

Love to everyone,

Liz, Brandon, and Madeline

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