Sixth grade: seizures and screaming and scoliosis and Hope?

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

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

Practically perfect…

It’s continued to be a roller coaster these past few days. But hopefully we’re turning a corner. More smiles and less tears. And lots of creativity today.

Today she made art with her hands in school (photo of that forthcoming) and after school she decorated the cover of her school communication book (it’s the book that goes back and forth between home and school so the home teachers and school teachers are connected). After she decorated it, she told Elaine ‘show mom’ in ‘home office’. (I was working from home today). The kid was so proud of her work. And so was I. So creative. #lilypoppins

The latest

The teeth could not be saved. She won’t have two top front teeth. Maybe ever. 

The good news (I’m grasping at straws here) is that she didn’t need a double root canal and the potentiality of the teeth getting infected in the future (which is what happened to me painfully twice) won’t be a cause for concern.  Her recovery will be faster. 

We will find a new normal. We always do. But this time it feels very different for me. Because it was an accident and I was there and if only I were a few feet closer, I could have saved her. I can’t stop her scoliosis from forming, I can’t stop her feet from deforming, I can’t stop her head from not growing. But I could have stopped her from falling. I should have stopped her. 

It’s been a harrowing few weeks, which included an ER visit earlier this week related to the first surgery. Pain management for this kid who has already been through so much has been tricky. Her voice is now hoarse from all the crying. 

Hopefully now, the true healing can begin.

Quick update on Lily

Lily had her oral surgery today. The goal had been to fully resposition the teeth. Unfortunately the surgeon saw too much damage to reposition, so instead focused on shoring up the the teeth and roots with a bone graft and a tooth splint (like temporary braces).

Lily is home now and, though in some discomfort, she’s come around from the anesthesia and is watching Mary Poppins (what else?!?!).

We have more appointments coming up next week and will keep you posted as things progress.

The road to recovery… for us both

Last week, a few days after Lily’s accident, Stephen gently nudged me out of the house to go to a previously scheduled yoga retreat. I was a wreck. I didn’t want to go. But I also didn’t want to subject my already traumatized child to a mother who was in break down mode. 

So I begrudgingly packed my bags and went to Mexico. It was beautiful. It was healing. It was filled with the most magical people and experiences. I was conflicted  the entire trip. But what kept me from ditching my retreat was the logistics of trying to find my way out of the jungle on my own. I could have done it. But it would have been a lot of work. And for what? Getting back one or two days early?

So I stayed. And I laughed. And cried a lot. And did a lot of yoga. And slept. 

Which is a good thing because Lily’s recovery is going to be far from straightforward. 

Lily will be having oral surgery on Monday (yes this coming Monday) to have her teeth repositioned.

Then two weeks later she will need root canals in both teeth as the nerves will be damaged when they move the teeth.  And after the root canal, the tooth that was chipped will be reconstructed. 

She’ll go under anesthesia for both procedures. 

The logistics of making this all happen and in such a quick turnaround has my head buzzing. Her dentist helped tremendously by making the dental appointments, including procuring an anesthesiologist for both procedures. But the pre-op appointments, the multiple calls with all the doctors, and the paperwork… oh the paperwork. Well, that’s mostly been on me.  And today Stephen is taking over as I’m heading to another previously scheduled day-retreat. 

Things are moving in the right direction. And for that I am grateful. I’m also grateful that I’ve got the most resilient kid in the world as well as the most encouraging and loving partner. 

But I can’t downplay how draining these next few weeks will be. So if you get a chance, send some positive thoughts our way. This kid, and her momma, could sure use them.

2.22.22

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.

Getting stronger

Six years ago… she needed to be harnessed onto the treadmill to be able to walk. She was having dozens of seizure-like episodes daily. She lost her appetite/ability to eat. Everything deteriorated. I couldn’t dare articulate this back then, but I wasn’t sure she’d survive. I wasn’t sure I’d survive.


The recovery was slow. She weighed 40 pounds for almost 4 years. I didn’t know if she’d grow again.


Now we are in a place where she keeps growing out of her clothes. It’s always the last thing I think of – that she’s grown. I was blaming the clothes dryer for a while but then remembered that kids grow. Kids should grow.


Earlier this week in physical therapy, Lily did 10 minutes on the treadmill at speed 3. A far cry from where she was six years ago.

There is so much people take for granted but I marvel at every pound gained. Every new skill attained.


This is Rett Syndrome.

Rett Syndrome and a pandemic don’t mix together well

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.

Double Digits

This kid is going to be 10 in a few days.


In these 10 years, she’s beaten so many odds. She’s doing well. But there are still so many things that she can’t do.


I often think about the conversations we would be having if she could talk. I have them with her regardless, searching her face for answers. But what about the conversations she wants to have? The Tobii is great but it is so very limiting. This child has complex thoughts and feelings. I can see it in her eyes. And those thoughts mostly stay trapped in that amazing brain of hers.


And when I say that Lily is doing well, it’s not like when typical kids are doing well. Doing well for her means that she’s not having significant breathing problems, she’s sleeping (albeit with medication), that she’s still able to walk independently, hasn’t been to the ER in a while and is capable of swallowing food. She still needs 24/7 support as she’s unsteady on her feet, her hands don’t function and she’s nonverbal.


And nothing is linear. Not her growth chart. Not her capabilities. Some days her ability to swallow food gets so compromised that we have to purée her meals.


But there’s good news too. She’s getting taller, she’s gained some weight (over 5 pounds this year alone) and she’s progressing academically (even in a fully remote environment). She also continues to be super cool, super funny and silly and super optimistic.


I say to her every day ‘how did I get so lucky to be your mom? To have such a sweet, smart, tenacious kid!’ I am so proud to call her my daughter. Everyone who knows her will tell you that she exudes love and sunshine and acceptance.
And she’s busting to see all of you in person — to give giggly hugs and have dance parties and make you read her books.


Hopefully we will get the opportunity to see you at some point this year. I’ll try to send more updates through www.blueberriesandgiggles.com as I’ve been off social media for a few months.


But for now, we celebrate a decade of Lily. Ten years have flown by and I want to make damn sure that the next ten are superior to the last.
I wish I could give you a list of things Lily would like for her birthday, but she’s gotten most of the tangible things for Christmas (which was less than two months ago). If you feel compelled to give something, please donate to Rett Syndrome Research Trust as the best gift this kid could get would be a cure. The second best would be something palliative to mitigate her symptoms. Both are being researched right now.


Sending love and health (both physical and mental) to you all.


C

Winter wonderland