I think it’s time for an update. Last week was mostly uneventful after her 2 Week Post-Op checkup Monday at Duke. Her surgeon got to see the incision for the first time since we were inpatient and he agreed with the ER’s assessment that it looked good enough not to need to go back in to clean it up. He wanted us to finish her 5 day course of antibiotics and just keep it clean and see what happened from there.
Thankfully it is looking better now. There is still a scab where the previous leakage had occurred but it looks like its healing everywhere now. As it has dried up, she has seemed to be less bothered by it and isn’t paying quite as much attention to it. She is fast and strong so it’s tough to keep her from messing with it if she tries.
Last week was difficult as we began to see the re-emergence of seizures. They are not nearly as bad as any of her seizure types before. But of course, we’d have loved for them to stop altogether. This was not a surgery that we expected to cure her of her epilepsy, so we always thought they’d come back at some point. The fact that they are as mild as they are is extremely encouraging. If they stay this way, her quality if life will have been vastly improved by the surgery by reducing her risk of injury during her seizures. Right now they aren’t causing her to fall down at all. We hope and pray it stays that way.
We are slowly getting to see what post-surgery Maddie is like. She is smiley and sweet as always. But some days she’s doing a lot of pinching and hair-pulling. And having a sneaky little grin on when she does it. She does it to herself at times too and we have to work hard to protect her incision when she’s in that mode. It’s definitely a great way to get attention and she’s figured that out. Typically ignoring would work but that’s tough to do when her incision is her target.
Some days (like today) she is extremely whiny and irritable. She will have her good smiley moments, but then be in tears within seconds. Certain transitions set her off…..like the change of a song or scene on Sesame Street. Or the final credits rolling on anything. Or if you change the app or her iPad before she is ready. She can usually quickly recover, but these emotional outbursts are really uncharacteristic for her. She is keeping me on my toes.
She likes the iPad a lot these days and no longer loves her books the way she once did. She also is back to throwing everything (toys, books) but she can direct where she throws stuff pretty well and she’s following directions at times too.
Her verbal skills are re-emerging as well, but we can already see that they are better when she isn’t seizure-y so we really hope that the seizures don’t increase or intensify much. We’d really love to have the opportunity to work on her communication. She has so much language in there, it’s just tough to get out when she’s seizing. She has already shown some interesting improvements in using her language functionally since surgery. A flash card animal app that she really enjoys often freezes up and goes blank when she presses it too quickly. I asked her to say “mama” instead of whining or getting frustrated when it happens. And she did it twice today without me prompting it! She also threw it more than two times when it happened. Luckily we have a virtually indestructible case.
There is so much going on that its really hard to keep up with. The emotional stuff can make the days really challenging even with all the good stuff. As a seizure mom, when she suddenly cries a lot over insignificant stuff, I tend to worry that a big seizure is looming on the horizon. In the past, as her big tonic seizures initially presented, she would have episodes of crying with no clear cause for a period sometimes an hour or more before a “big one” happened. So hopefully it’s all just adjustment stuff for her, meaning that her brain is adjusting to this new way of life with a lot less frequent seizures. During the one brief stint of time without seizures a few years ago, she had some serious emotional and behavioral quirks as the seizures stopped. So I’m hoping that this uneasiness she feels is mostly that and not big scary seizures just around the corner.
She is walking like a little pro now. She tears around our house trying to get to all the “new” things she has found that she likes to label. We’ve lived here just since mid-April, and before surgery, I’d say Maddie knew where her playrooms were and where her bedroom and bathroom were, but beyond that, the house wasn’t really interesting to her. She certainly hasn’t paid much attention to the pictures on the walls or what she could see from individual windows. She still wears her harness because the house is almost all slick new hardwoods and I just still don’t feel confident in her walking or that a drop seizure isn’t lurking. But I hold it loosely and she completely supports herself now as she practically runs from room to room, naming items or people in the photos, asking to be picked up to touch things or see herself in mirrors.
Her behavior is very much like the two months 2.5 years ago where the seizures stopped. It really is neat to see that because it means that when you strip all the seizures away, there is a curious energetic little girl under all these meds that wants to be able to interact with her environment. On the flip side, it also means we really haven’t made many gains in those 2.5 years. But how could she have with seizures all day long? So I am not worried about that. I just hope this period lasts and that we can get her feeling more comfortable emotionally so that she isn’t so frantic. So that we can really make some good progress.
There is something kind of funny about all of this which could become a really great problem to have in the very near future. We just bought this house. It’s huge and beautiful and we mainly did it to try to make the best of a tough few years in Raleigh job-wise for Brandon and because Maddie and I had been so house-bound for so long. I wanted to splurge and really buy a place we could enjoy being “stuck in” all day. Because Brandon is active duty Marine Corps, every home is temporary, and so I just picked something that made sense for us for the next couple of years. It NEVER dawned on me that while we lived here Maddie might be able to walk around independently. We will have one heck of a time child-proofing this place if things progress to that point! Like I said though, that’s a great problem to have. Ha. I laugh at myself on that though. I considered that we’d need all this space to host family who’d come to help around surgery time if we chose that option. It just didn’t really occur to me that the surgery might be as successful as it has been so far. Long may it last.
In the future, updates will likely be more infrequent. I finally let my mom leave a few days ago. It makes things a bit trickier since we still aren’t leaving Maddie alone ever yet. Which meant today I couldn’t shower until the babysitter got here midday. So I get to lounge around in pajamas more. It will hopefully be much easier soon, as I feel like her incision is just days away from being closed enough to leave her alone briefly. If it remains tough for awhile, I’ll ask mom to come back so that I can bathe and cook again. But for now we will keep hoping for improvement everyday as we get used to this new normal.
Love to everyone,
Liz, Brandon, and Maddie
