This trip to Houston was a little different than the last one. At the last one we were nervous and everything turned out as good as could be expected. This time we weren’t nervous and we didn’t feel like it turned out quite as well.
We didn’t get to see her GI doctor since she was stuck in other appointments and we ran out of time and Maggie ran out of patience. We met with the Phys Med doctors who thought she looked great and had no new recommendations for us. In some ways that’s quite an accomplishment. For a long time every doctor we would see would have alaundry list of things for us to do. Now, it’s surprising if they suggest something we’re not already doing.
We also met with her neurologist who is pleased with how she’s doing and while he thinks she’s maybe even a little better than she was, reminds us we are still at significant risk. He reminds us the trials are going well but he can’t really talk about them lest he spoil the research. He mentions a few other potential treatments that are coming down the line. He mentions he’s moving closer to us. All good stuff. But the idea that we’re not out of the woods yet is no fun.
I think a hard part for people to understand is the constant sense of impending tragedy. She’s doing great now – she’s running and jumping. She’s swimming like a champion. Not a champion of swimming, mind you – she doesn’t float and hasn’t quite figured out you’re not supposed to drink the water – but she’s making great strides. She’s gaining wait and muscle. She’s getting stronger. She’s even vocalizing more now. She knows her abcs and 123s. She can’t pronounce all the letters and numbers. But she knows them. It’s obvious.
But at any minute something could change. She could get pneumonia and forget how to walk while she’s laid up. She could get a seizure and forget how to hold things. That’s Rett’s dirty secret – we constantly have to be on the ready. That’s ok, Rett. I’m ready. En Garde.
After a really great and relaxing week spent with family, swimming every day and getting eaten alive by mosquitos, we’re going back to Texas Children’s Hospital in Houston today – the mecca for Rett research. We’re going to see Maggie’s neurologist and gi doctor as well as meet a new physical medical rehabilitation doctor. It’ll be good to check in with them. My parents are coming as well. It’ll be great to spend time with them.
My feelings on this trip are a world apart from where they were 6 months ago after just getting the diagnosis, though.
Then I was determined to go and get some answers. My parents came for much needed emotional support.
Today, I’m not so sure why we need to go. My parents are coming, really just to visit the children’s museum again – we all really liked it when we were here last. They also really liked the restaurant at the aquarium. We’re all excited to go back. But the doctors? I could go either way.
When we met with the doctors six months ago we were positive we would need to come back every 6 months. We would need to check in with the doctors. I think that was because in my lifetime doctors have always been the people who prescribe medicine to fix what ails me. My thoughts 6 months ago were, “maybe when we come back they’ll say, “oh, have you tried this drug? It makes everything better.”” Or maybe I was just scared and thought that checking in again would make sure everything stayed on track.
In some ways it probably has. We’ve worked hard to keep Maggie progressing, allow her to retain her skills, and help her to build on them. I think we both hope the doctors will be impressed. I don’t know why that’s a consideration, but I think if we go in and they think she’s gotten better, we’ll feel like our hard work is really paying off, beyond in the small victories we see every day.
I guess it’ll be nice to get some confirmation that we’re doing the right things, that she’s progressing nicely and that we just have to stay the course. It’d be nicer, though, if there was something they could do to help her.
It’s been a regular struggle to get her to play with other kids. When she was younger, before the regression, she would play near them, but not necessarily with them. And when she started tossing sand out of the sand table, they’d typically find something else to do, lest they be sandblasted. Don’t get me wrong, she loves other kids. She loves watching them play. The apraxia just gets in the way of her actually being able to do what they’re doing.
I mean we can make it look like she’s doing what they’re doing:
Then I watched her participate in a full on screaming competition. One girl screams, the other screams louder and so on and so forth. In public it’s probably not that appropriate, but regardless, I couldn’t be prouder – for so many reasons – she’s vocalizing, appropriately, she’s communicating, she’s listening and responding. All of it, simply great.
And then, visiting Texas, her cousins and her cousin’s cousins, who are so good to her, wouldn’t let her get away with playing alone. She swung on that tire swing for hours. Even when we’d take her off, she’d hit the tire again, telling us in her way “I’m not done with this one just yet”.
Even as some cousins would get up and go do other things, she would swing, smiling and waiting, as other cousins came to replace the ones that left. The constant flow of kids made her so happy. And her happiness is our happiness.
Rett Syndrome has changed my life in so many ways. Before the diagnosis, I was working at Jash, the digital studio that Sarah Silverman, Michael Cera, Reggie Watts, Tim and Eric started along with a bunch of other people I’ve always respected and at various times believed it to be my dream job. I was working with people I liked and respected, running a digital studio, making comedy videos. It had everything. After the diagnosis, I couldn’t imagine anything less important. (No offense to anyone from Jash who might be reading this)
I had called my friend who started a company called Omaze, which runs sweepstakes for once in a lifetime experiences to raise money for charity, thinking I could get something going for one of the Rett charities. A week later he called to see if I wanted to work for him. It fell into my lap and it’s been a great reprieve, in addition to being a perfect fit considering my experience and my hope for what my next steps would be.
He’s also been very generous with the access to the company resources. And after 5 weeks of being there this is the product of that generosity: youtube.com/epiclloyd
Lloyd is a funny comedian who is well known for his Youtube channel Epic Lloyd and better known for his part in Epic Rap Battles (youtube.com/erb). He was among those that were asked to come to the White House to talk/meet with the President about Social Media. He is helping us bring awareness to Rett Syndrome in a very creative and fun way. Since his audience is young and most likely doesn’t know much about Rett, this is going to be very helpful.
It should be noted that this is not suitable for work. But in one fell swoop 1 million more people now know about Rett. And if many of them take part in this auction, we’ll be able to raise a good sum of money for the charity. Lloyd Ahlquist, you are an impressive human and while I said this in every email, it can’t be said enough how grateful I am for your efforts on this. Thank you Lloyd, for you time, your talent and your willingness to bring awareness to our cause. Thank you so very much.
When Maggie was first born, our friends Dan and Rachel visited regularly, and made it a point to be a part of Maggie’s life; and Maggie (and the two of us) loves them for it. Her OT still talks about the time that Rachel picked Maggie up and how excited Maggie was to see Rachel. They just do a lot to make her laugh and keep us positive.
They have a son, Abe, who just turned 1 and in lieu of presents they asked everyone to donate to Rett. I mean, maybe it’s because their house is collapsing under the weight of all of Maggie’s hand-me-downs, but either way, we’re very grateful to have the friends we do have. It makes this much easier. And to everyone who’s following along and reading up and being a part of this, you deserve special thanks as well. I just started with the Levy’s because I happened to have this awesome picture where everyone looks great and Abe is the exact appropriate level of confused.
Maggie has days where everything seems to be connecting. She climbs better, she uses her hands more and she communicates more. Then there are other days that nothing seems to connect. This is the Apraxia part of Rett. We never know what each day will bring but we are learning to enjoy each day just as they are.
Today she did some amazing things. For her, at least. And that makes it amazing for us.
1) She opened her playroom by herself – pulling the handle until the door popped open and pushing the door herself. The amount of strength and dexterity required for this makes it that much more impressive for a little girl fighting all the things she’s fighting to accomplish.
2)She scooted out of her car seat, climbed up on the car’s factory installed seat, turned herself around and pushed herself out of the car. We’ve been working on this for what seems like ever and she finally did it. It was only once so far, but man, does it feel good to have months of work finally pay off
3)She stepped up onto the step stool and sat down on the potty herself. Maybe this is something she’s been able to do for awhile, but we never thought to ask and she never thought to try. Or, maybe today was the day she figured it out. Either way, we’ll take it.
Amazing stuff, Maggie. When you learn to read, and you read this, know that not a single little thing goes unnoticed.
One thing that I can always count on with Maggie is that if something doesn’t go as planned, it affects the entire day. I was alone with Maggie all weekend and thought going to our local children’s museum would be a fun day – plus they were releasing a bunch of butterflies on this day. What little girl doesn’t love butterflies? Before her regression, Maggie used to love this place. In fact, it was one of the few activities we could count on entertaining her for an extended period of time. They have some water features and one of her favorite things to do used to be just walking through the water fountains.
Today, and for the last 6 months, she hasn’t cared for these water features, choosing instead to trudge through the mulch – which is by far her favorite activity nowadays.
When we got there I realized I had forgotten her snack bag, including the sandwich I had made for her. Oops. Luckily, our friends Leslie and Eric were willing to sacrifice their son’s raisins to the cause. A hungry Maggie, though, is an angry Maggie. So she started biting me. This is one of her mot infuriating behaviors. Once she’s got you in her teeth, you literally have to pry her jaw open to get her to let you go. After she was fed, what I’m sure was a disappointing salad, she was in a better mood and lasted until they released the butterflies. It was a lovely sight and one even landed on her arm. Well past her nap time and exhausted, she was non-plussed. Apparently it took a little bit to register exactly what happened, though, since on the way back to the car she couldn’t stop giggling.
And that’s exactly what I planned on.
I feel like that’s all we’re really doing. Every day we read about another girl with Rett who’s seizures are out of control, who had to get a feeding tube, who at 25 is still no further along in their progress than Maggie, or for whom the worst has happened. With Maggie, I’ve convinced myself that forward progress, however small, will ultimately allow her to lead a full life. I’ve even convinced myself that she can lead an independent life if we can get her to progress enough. Somewhere deep down, I know, without a cure, I’m fooling myself on that, but, it keeps me going in any case.
And a cure is possible. It is. I’ve talked to some of the leading minds on the subject and they’re all optimistic. According to our friend Dan, I’m “AJing” Rett syndrome. That could mean I’m making Rett syndrome feel uncomfortable which is what “Ajing” typically means. Or it could mean I’m putting 1000% effort into it. Because of the latter, somehow I’ve been talking to the people who are running these foundations. They’re just moms and dads like us. They’re just trying to find answers like us. They all think there can be a cure. But money for trials and time is all they need. One of the problems with Rett is it leaves us with this constant sense of urgency because of all of the symptoms that are yet to hit. So I can donate money, but we don’t have a ton of time. She can live an independent life. She can live a full life. But not without our help.