Tag Archives: Rett Syndrome

Lily’s cake manifestation

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Yesterday Lily came home and was a bit cranky. So Urszula heated up the leftovers from lunch and they sat in front of the Tobii, chatting while she ate. 

Lily immediately went to the baking section and rattled off the following things:

Baking powder

Sugar

Lemons

Cocoa powder

Mixing bowl

Baking dish

Vanilla extract 

Butter

Salt

And every time she mentioned one of these words, I grabbed the item from the kitchen and put it in front of her. It made her so happy and giggly. 

By the time Elaine (Lily’s speech therapist and good friend) arrived, we had a table full of baking stuff so the two of them worked on finding a recipe that fit the above ingredients. And the entire session was about measuring and mixing ingredients – part math, part science. Lily quickly got frustrated with the process as she wanted chocolate lemon cake immediately.

So Elaine and I finished up. I popped the cake in the oven and once it cooled, Lily was so excited to FINALLY eat a piece. It was delicious!!

Unfortunately for Elaine, she had already left by the time the cake was ready and I’m not sure there will be any left for when she comes back on Tuesday. 😆

Here’s the recipe.

And here’s a photo montage from 2016 of Elaine and Lily baking together in our old Brooklyn apartment.

Sixth grade: seizures and screaming and scoliosis and Hope?

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This is not your typical beginning of the school year update. I don’t have time for nostalgia as we’re playing a thankless game of whack-a-mole and the stakes are terribly high. Where to begin….

Lily started having seizures at the end of May. We’ve been working with her neurologist to find the right medication but it’s a long process of trial and error. Seizures are scary. And they’ve been happening daily. This sucks.

Also, and likely related, she’s been getting easily overwhelmed. It started with sneezing and coughing – she’d break down crying whenever someone made an unfavorable noise in front of her (which curtailed our already limited social engagements) but now she’s been having full blown meltdowns. Daily. Usually in the afternoons. And for no known reason. This sucks too.

And as if those things weren’t enough, the latest result from the orthopedic surgeon show that not only has Lily’s scoliosis progressed, but now one of her legs is growing at a different pace. What. The. Suck.

The Hope? Well the Hope (not sure why my autocorrect keeps capitalizing this word but I like it) is that maybe going back into a familiar routine will help us all move into a new normal with less pain, less screaming, more peace.

And throughout all the hell this child deals with because of Rett syndrome, she still continues to have moments of calm and joy and positivity.

Thankfully, for her first day of 6th grade, she had a good day.

First day of school photo shoot

Adventures with Mom

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Yesterday Lily didn’t have any therapies after school and Urszula had the day off. AND the weather was nice. A rare opportunity presented itself to me: taking my girl on an outing with no real agenda.

We walked up Columbus Ave to window shop, popping in and out of stores she wanted to explore. Once we hit 72nd, we went east to Central Park—Strawberry Field to be specific—where we listened to Beatles cover bands for a while.

Right now we are all a bit Beatles crazy in the house. So I’m not surprised my subconscious brought us to Strawberry Field. While there, Lily confided to me that Paul is also her favorite. (Sorry Auntie Angela – I was with you for a long time about John but after watching the Beatles documentary, I’m all about Paul!)

From there we walked through the park down to 67th. And then stopped off at a bookstore as I’m trying to find a book or two of poetry for her as I think she’d really enjoy it. We didn’t find a book but she loved exploring all the different sections, especially the photography books.

From there, we made our way back home.

It was quite the adventure and Lily didn’t tire at all – though I did a few times and so we would sit and people watch. She was smiling and happy throughout. And so was I.

#citygirls #uws #centralpark #beatlemania #rettlife

2.22.22

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On the socials, everyone was posting that it was going to be a magical day. 

I had high hopes for it as well. Not because of some particular date.  But because I was finally going to spend one full day with Lily – no caregiver, no Stephen – just us two girls, like how it used to be years ago. We were planning to buy her a new spring jacket and then head over to the history museum.  A girls day. Get dressed up. Put on some makeup. Have some fun!

I was extra excited because it was the first time in a long time that I was feeling confident about going out with her alone. No stroller (that she doesn’t fit into anymore anyway). Just reliance on our legs and public transportation (and maybe a taxi if we were in a pickle). 

The morning started off easily enough. Stephen got her ready for the day while I ran down and trained at our gym with a guy whose teaching me the Turkish getup (look it up – it’s legit). Once upstairs, Stephen headed off to work. I pulled up all the trip hazards (rugs) in our bedroom and Lily chilled in there listening to music while I took a quick shower.  Once I got out, I started talking to her about our adventures for the day. She was very excited. And was following me around. I started to put some makeup on in front of the hallway mirror and she ventured off into the bathroom to look in the mirror there. Then I heard a thud. 

And that’s when the day fell apart. Lily somehow tripped and fell into the tub. She semi-caught herself with her hands. But she still managed to bang her mouth. 

The screaming was delayed. And that’s when I knew it was really really bad. 

There was lots of blood coming out of her mouth and her two front teeth were nowhere to be found. 

Thankfully there were no broken bones. I called Stephen to come home. I called the dentist to tell her we are on our way.  None of this I remember very well. 

The rest of the day was a blur of blood and screaming and crying (including mine) and holding her so tightly and Stephen taking care of us both, keeping level-headed and calm as I was feeling anything but. 

I guess the magic of yesterday for us was that she didn’t lose her teeth. They got pushed back into her gums. Hopefully they will come down naturally. But if they don’t, she’ll need surgery. We go back to the dentist in 2 weeks to check in. And then another 2 weeks to decide about surgery. 

For the most part, Lily is well; she’s got a fat lip and a huge gap in her mouth. But last night and this morning, she was smiling and giggling. 

It’s going to take a while for me to find a place of peace. My confidence as a mother and a caregiver is shot. My heartbreak and grief over what happened to her on my watch feels insurmountable. 

But I will push forward. For her. For me. For Stephen. For us. 

This is my grief. Not hers.

Rett Syndrome and a pandemic don’t mix together well

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I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.

That’s why you’ve not heard from me in a while.

Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.

So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.

The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).

The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.

Hence the appointment with the Rett specialist.

A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:

1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.

2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.

I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.