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.
Everyone other than me may have known it was a bad idea, but my pridefulness necessitated the sharing of the news. A week or two ago I had written that Maggie was falling asleep in under an hour. I jinxed us. It was probably the next day when she figured out there was an opening in the railing and promptly scooted out. After a few repeated visits from one of us, eventually she fell asleep, but the excitement of it all turned it into a two hour fight again.
Every night since she laughs as she scoots her little body out the opening in the railing. Jenny, in frustration, even considered putting the crib wall back up. Not really, but it did come up in conversation.
Then she got sick. Congestion, couldn’t breathe, coughing. She’s been sick at this point for two weeks. At this point she’s more or less over the cold, but the bad habit of scooting out of bed is hard to shake. One because it’s adorable. Two, because we appreciate how hard it is for her to manage the motor planning part of getting out of the bed, but mostly because she thinks it’s funny.
We have Melatonin which is a natural supplement to help her sleep and have been trying to avoid it. Our developmental pediatrican says it’s fine. I’m just opposed to giving her medicine. I just want her to be typical. So I don’t want to give her medicines and supplements that typical kids don’t need. There are times when she needs it. There are times when everyone needs a little something. But, constantly medicating a problem that isn’t a problem for other kids is hard for me to wrap my brain around. Until she needs it, I’m hoping to keep her unmedicated. Gives me a sense she’s healthy. And that’s a relieving feeling for me.
More positive developments:
So last night I had a conversation with Maggie. A full, actual, amazing conversation. The first one I may have ever had.
It started at dinner and went like this:
AJ: Are you enjoying your fried rice? Yes? Or No?
AJ: Do You want more beef? Yes? Or No?
Maggie shakes her head
AJ: Maggie! That’s amazing? Do you want your water? Yes? Or No?
AJ: Maggie! This is fantastic. Well, I think dinner’s over, do you want to get down? Yes or no?
Then she spun her legs around off the chair, stood up and got down from the table.
This type of interchange continued for the better part of her bedtime ritual. Do you want to get in bed? Ess. Do you want to read a book? Ess. Do you need to sit on the potty? Shakes her head. So on and so forth. It was awesome.
If I had human emotions, I likely would have cried.
The main reason I can stay optimistic is because I’m impressed every day by the things that she can do that everyone tells us she wouldn’t be able to do. And this was really impressive.
And it’s not just us – this is from our speech therapist:
That is so awesome. In my clinical experience, when I have overlapped my sessions with OT sessions, I have observed an increase in language some of the time. The reason being is that a sensory need had been met allowing the client to concentrate more on language.
Today, in my session, she said, “Wawa”, “sss” for “yes”, “ah” and a “ba” sound when working on verbally imitating “mom”.
For receptive directions, I used 3-D objects (or actual objects) in a field of 2 and Maggie correctly touched and/or grabbed the object asked for in 8/10 trials. It was great!
Deandra Schmidt, M.S., CCC-SLP
Speech Language Pathologist SP 15211
Advisory Board Member for CSHA District 7
So the results are in.
She is not currently experiencing seizures, but she did show some “disruptions”. All that means is that, as expected, her EEG was abnormal and she is at risk for seizures. This doesn’t really change anything from what we were told we were going to hear, it just changes from what we were secretly hoping to hear. We’re also being told that there is no additional medical concern about seizures. As long as she’s safe and can’t fall down or whatever, it doesn’t cause any medical issues, it’s just annoying.
It is still altogether possible she will never have seizures, we just have to keep an eye out, since it’s still possible she will. Though, maybe those “disruptions” were her just dreaming of the cure, or of dragons and unicorns. Probably dragons and unicorns.