We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. I went and checked on the pool before lunch and it was 70 degrees, aka too cold to swim. So we had to cancel. While Mags and I were eating lunch, she kept navigating on her Tobii to Farm on her computer. So I modeled “What about the Farm? She replied “Farm, Farm, Farm, want.” So I modeled. “I want to go to Farm.” I was so happy she was trying to use her computer and not for the quick easy answers, which she has been doing a little more, but for something she actually wanted to do. So we looked up the closest farm and off we went. It was small but both kids were happy. We were there an hour, fed the sheep and goats, and bought a fresh watermelon and corn. Success! Here’s us getting Mags to feed the goats even though she didn’t want to get too close. Pretty much nailed the family selfie too.
Sunday we took a spur of the moment trip to Ojai. We visited some friends there. Ojai is such a peaceful and fun small town to visit, we should go more often. Or at least I should. Kidding, my family can join me. We ate, we swam, we walked around, we ate, then drove back to LA. Fun day! If you remember, the fires this past year surrounded Ojai, and you can see there is regrowth happening already. Last year the hills behind us were all on fire, but this year, to quote a Jurassic World slogan, life finds a way.
Monday was Memorial Day. We had planned to meet our friends at the beach. My weather app said it was going to be 68 degrees. I was tentative about a chilly beach but we packed it up and met them for the afternoon. It was warm where we sat, but closer to the water was chilly. Gray didn’t care, he chased the waves and wanted to play with daddy. Every time Mags and I walked to the water, she would turn around and head back to our where are stuff was. It was too chilly for her. She is so skinny, she gets cold easily. I have to remember warmer beach clothes for her. She would rather sit under the tent and eat watermelon. So that’s what we did. We had girl time. (outfits not necessarily worn in this order, lol)
I didn’t have Mag’s arm braces on her while we were at the beach and she seems so tight. Do you put braces on your Rett kids at the beach? I guess they are washable. I need to think about this, we plan on going to the beach a lot this summer. Maybe one brace is a beach brace, then leave another one as a dry brace? I’m up for suggestions.
#magnoliashope #rettsyndrome #parentsaretired
What a difference one little pill has made in our lives. Two weeks ago I lowered Magnolia’s seizure meds. She was taking 3 pills in the AM and 3 pills in the evening of Topirimate aka Topimax. She now takes 2 pills in the morning and 3 pills in the evening. That’s it, one pill. We have seen an increase in her energy, alertness, instincts and just overall better. She still isn’t using her Tobii as much as she was before the seizure meds but I’m hoping that she is just being stubborn. School year is coming to an end and we are really going to focus on reading and writing this summer and making her build her sentences with her Tobii. I’m hoping with extra attention, her willingness and ability to use her computer increases.
Maggie did have one 10 second seizure at horse therapy yesterday, but that’s it. In two weeks, one 10 second seizure. It has definitely been worthwhile to lower her meds. I wish I had done it sooner, but coulda, shoulda, woulda. And I didn’t know.
The other interesting factor in this seizure roller coaster ride, is the gut brain correlation. While talking to Magnolia’s epilepsy Neurologist, she mentioned epileptic patients have more seizures when they are constipated. A patient that is having GI issues (gastrointestinal) could see an increase in seizures, they are correlated. Well, well, well….Maggie has had a rough GI year as well, especially the past 6 months. We have talked to a Rett specialist, nutritionist and Maggie’s pediatrician. Her pediatrician had tests run. Nothing has showed up irregular. Not an infection, a virus, vitamin deficiencies, everything is normal. Well, its not normal.
On Monday we are going to a new GI specialist, she also specializes in kids with developmental issues. So hopefully, she is our missing key. Also, she hasn’t gained weight in two years. She just can’t seem to break 40 lbs. I’d say lucky her, but she needs to gain weight. I can’t seem to lose 5 lbs and she just can’t seem to gain it. I guess we both have issues, but hers actually matter.
We will take all of the prayers, good vibes, healing vibes, good juju, crossed fingers and good thoughts, our way. Its been a year of us battling her GI issues. If we can mend her GI problems, so many other problems will subside.
Maggie was diagnosed on 12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now.
Four years ago, Maggie hadn’t lost many skills. She had slowed in development but regression hadn’t fully begun, yet. The next 6 months she would lose speech, then some hand function, then parkinson’s like tremors started. As Rett has progressed, we have gotten stronger. Or more numb to the devastation, I’m not sure.
I remember when Maggie was first diagnosed with Rett, my world collapsed. In the first few days after diagnosis, I could barely get out of bed. I cried all night. I sat next to our bed every morning, I would cry more. Pulling myself together enough to pick myself up off the floor, wash my face and go get Maggie dressed for the day. The physical pain in my gut was real. There was rarely a moment that it didn’t feel as if I had been punched in the stomach. Breathing was hard, I would find myself short of breath throughout the day. I had to compartmentalize my emotional pain, in order to physically take care of my daughter.
I didn’t want her to see me cry, so I would cry while in the shower, she would fall asleep in the car and I would pull over and cry. I would be on the phone with therapists, hang up and cry. I would be filling out paperwork for the Regional Center, take a moment and tear up. I would talk to my mom or my sister and I would cry. My best friends would come over, we would cry. There was a lot of crying, because there was a lot of pain. There still is, but its different now.
As weeks went by, I wondered how any of this mattered. Driving in LA, I would look at other drivers and wonder, who else is in pain? Months went by and I truly wondered what was the meaning of life. What is the meaning of Rett syndrome? How am I supposed to watch my daughter lose everything she has? Will I ever be truly happy again?
For a year, there was a buzzing in my body. I could feel the stress and pain manifest itself through buzzing. I was trying to cope, but with Rett syndrome, not only is the diagnosis hard to hear, the progression of the disorder is frightening. Its the knowing and the not knowing at the same time. Will my daughter lose the ability to walk, talk, use her hands, eat, or breathe? Will she have scoliosis, seizures, breathing issues or any other medical problem that Rett syndrome causes? There is no knowing. Rett syndrome manifests itself in so many ways, and all of them are scary. Rett is a monster of a disorder. Maggie is now dealing with all of these symptoms. Yes, scoliosis too, that is an entirely different blog though.
My hope is to be happy again. The truth is, I don’t know when that will be. I try and there are plenty of happy moments but something inside me has changed. I don’t think anyone will ever convince me there is a meaning for Rett syndrome. It is too cruel a disorder. When I think back when Maggie was first diagnosed, I realize I pushed through the pain each day because my little girl needed me to. Some days were easier to get up and other days I had to make the choice to fight.
I distinctly remember one morning, 6 months after Maggie was diagnosed. She had started to lose her hand function, her arms and hands would shake and tremor all day and she would cry all day. We had been at therapy all morning, she was napping and I was laying on the floor outside of her room. I was so emotionally and physically drained, I couldn’t even walk to my own room 8 feet away to lie down. So I laid there and I cried. After about an hour of crying. Maggie woke up. I couldn’t move. After a few minutes, out loud I started repeating to myself, “Get up”. “Get up” “Jenny, get up”. Finally, I did.
So for families that have been recently diagnosed, know that you are not alone. You may have to tell yourself to get up, but you will.
Right now, our family is dedicated to finding the happy and beautiful moments in the midst of pain and chaos. Our life is crazy, on a good day, Rett takes its toll. So we try to make the best of each day, of each outing, of each doctor visit. Its not easy, but choosing to be happy and learning to enjoy the moments will get you through those difficult days/weeks/months.
This pic is the night before Maggie started the Trofinitide clinical trial last year. Maggie and AJ were clearly on their own date, so I enjoyed my glass of wine with the beautiful view of boats and of course, them. Happy moments and hope.
It took me 2 months to finish this blog post. Its hard to look back at that first year and remember the pain. Ugh. Happy thoughts!
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body temperature. The last one was a new discovery. She’s always run a little hot, but so have I. So, whenever I’m warm, I know she’s miserable. We learned the hard way that heat is a real problem watching her face get flushed, her grow lethargic, unwilling to eat much, even her favorite foods, and even, on occasion, vomit. Not fun. She’s also taken to biting and hitting in frustration. Mostly me. But that doesn’t make it better. I’m constantly terrified that she’s going to bite someone else, mostly because she doesn’t just bite, she locks her jaw and you have to pry open her mouth with your hand.
But while the first day was brutal, the next two days were a blast.
We spent two straight days jockeying between swimming and air conditioning which, from what I can tell, is really all there is to do in Palm Springs.
We went with our favorite travel companions, Leslie, Eric and their 2 year old son, Ollie. They’re just doing what friends do by dragging us along on these adventures, and it’s appreciated more than we can show while we’re with them. Ollie, just learning to speak himself, is great with Maggie and wants to play with her regardless of how many times she rebuffs his efforts. And Leslie and Eric have always been quick to get down to Maggie’s level, give her a good hard squeeze to give her some sensory input, and speak a little slower than normal so Maggie can follow along. It shows that they’ve read up on Rett and are doing everything they can for her. And it’s obvious how much Maggie appreciates it. No matter how overheated she may be.
For the longest time it has felt like we were losing the battle with hand function. Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis. We spend most of everyday, watching what she can do, discussing what we saw that day and figuring out ways to help her keep functionality.
See, her constant arm flapping and hand wringing gets in the way of her using her hands as appropriately as she would want. We keep getting reminded that she’s cognitively intact, not just by doctors, but by her as well. We know she understands everything, just her body doesn’t always listen to her brain.
When we went to see the neurologist he had told us that eventually most things will stabilize and even start to improve if we work hard enough. While that’s been true of a lot of things, her hands haven’t quite made it there.
It seems like recently she had stopped holding things in her right hand and would drop whatever she could grab with it. She’s been wringing it incessantly for a number of months now, so maybe it just hurts. But this is a battle we really don’t want to lose. Things just get more difficult when you can’t use a hand. Other than weight bearing exercises and any fine motor activity that she will actually let us force her to do, there’s not much we can do to help, and there are only so many pushups you can make a 3 year old do. The answer is 64 if you were curious.
As Jenny mentioned in her post, I’ve been trying my hardest to invent something that could help her. Splints, velcro, weights. Anything I could think of. When we finally got a prescribed splint, I thought that was going to be the answer. But it limits her use so severely, I’ve been afraid to even use it. The whole fight has been frustrating to say the least. Right now she hits herself in the face constantly, and bracing her arm has its own limitations. It’s neurological – her brain is just stuck in this pattern and no doctors or therapists have been able to crack the code yet.
Then this weekend happened.
She has not been able to use two hands together like this since she was about a year and half old. And she was doing it consistently this weekend. It’s hard to express how awesome this is. A majority of the girls with Rett have limited, if any, functional hand use. It seemed Maggie was headed that way. And she still might be. But, at least for this weekend, she decided to head in the other direction.
Hopefully this means we’ve stabilized and will start to see some improvement now. But if not; if it’s going to continue to fall off, I’ll have this little nugget of wisdom from my dad to fall back on – “if that’s the worst of it, it’s not that bad.” For a man who can only use one of his hands and probably voted for Bob Dole, another man who could only use one hand, it’s more of his typically sage advice.
Every time I feel like we’re losing a battle, I’m reminded of George Washington, who, though, he lost more battles than he won, always lived to fight another battle. And, just like him, we’re going to win this war.
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.