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

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.

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.

Day one of x???

Wild times. Unprecedented times. For everyone.

And I hope you are all taking the necessary precautions. We are. Yesterday we drove up to our house in Connecticut packed with food, clothes, books, computers. Spent the day settling in. It is truly beautiful up here. And to be able to go out, smell the fresh air and see nothing but nature, that is a real gift.

These photos from yesterday depict one of joy and calm. And during some parts of the day, it was true. For others, not so much. Lily really misses school and her friends. I miss going to work, as does Stephen. We were trying to juggle it all yesterday, and without any support. It did not all run smoothly.

I have two immediate concerns – the first is that it has been years since I’ve not had daily support for Lily. She needs a lot of supervision and guidance. She can’t run around unaccompanied or sit there and play with her dolls, or play a game on her iPad or whatever it is that typical 9 year olds do. The other is also related to Lily. It’s been years since she’s not had intensive, consistent therapy. In a typical week she has at least 20 hours of direct treatment – occupational therapy, physical therapy, speech, etc…

To sum it up: I’m most worried about my capacity to care for her WHILE ensuring that she maintains the skills she currently has. And working full time.

Thankfully we’ve got Stephen. We are very lucky girls. And I know that he and I will create a new norm – one that will work for us all. It is not going to be easy. Nor will it always go well. But together we will do our best.

Oh, and then there’s this whole pandemic thing. Health risks, massive disruptions to the community. As someone who has spent the last 8 years living in a state of near-constant panic, who has fought for basic rights, who knows that each day can bring a terribly scary turn of events, I’m empathetic to everyone who is now dealing with these feelings. It is not fun.

But we will get through it.

Sending health and peace of mind and abundance to you all.

Love,

C & L & S

Highlights from a very interesting day in the country…

Advocate like a mother

When so many things are going wrong for my kid, it’s not easy staying positive. Every institution that has been (supposedly) set up to help my kid is failing miserably.  Everything is a battle. Every day there is someone to call or email or visit. Some days I write dozens of emails and scan just as many documents to move things forward for Lily.  Inching forward is more like it.

Thankfully I am not alone. I have an army of people helping me along this battle – from Stephen to Lily’s therapists and doctors, and the other special needs moms – who are in the trenches with me, fighting similar battles, sharing their knowledge, their love and support. But we are outnumbered.

Yet we move forward. With determination and hope. Because we are fighting the good fight, trying to get the most basic of needs for our children met.

The absurdity of the situation (like so many other things going on in this world) baffles me. Here is one such example: We recently saw Lily’s neurologist as she is starting to have episodes that look like seizures. The doctor prescribed a 48-72 hour EEG. While trying to schedule it, I learn that my insurance company will not pay for a prolonged EEG without putting her first through an in-office 30 minute EEG. It is a foregone conclusion that we will not get any answers from this short study; Lily has these episodes maybe once a day. What I do know is that this 30 minute EEG will cause a significant amount of stress for my kid and we’ll have to do it all again a few days later.

For those of you who are unfamiliar with what an EEG entails, here is a quick overview:

  1. Walk into a small, claustrophobic room filled with medical machines and a hospital bed.
  2. Get the kid to lay still while the technician glues 20+ leads on her scalp and then wraps head, which takes about an hour. (Many of you know Lily so you could imagine the herculean effort it takes to keep her still.)
  3. Sit there for 30 minutes to 3 days hooked up to a machine.
  4. The technician (who is often slurping on a smoothie or munching on chips throughout the process and sometimes smells bad) removes the 20+ leads and we go home.
  5. The parent then spends 2-5 hours getting the glue out of the kids scalp.

Could you imagine putting your kid (and yourself) through this twice? The first time for no reason other than to tick a box for the insurance company.  So I’m fighting back, knowing it is unlikely that I will win this battle.

So, I am angry.  And scared.  Because Lily may now be having seizures which is why we are doing an EEG in the first place.

But I am also hopeful.  And proud.  Because through it all, my child shines.  She is not easily deterred. And neither am I.  And I know that – given all these crappy circumstances – we have a lot of great in our life.   And some days, I’m actually able to focus on this and suspend my worries about her future.

One of those days to be grateful for… picking flowers, veggies and picnicking with friends at our country house.

 

Wonder Woman

I can’t stand the cuteness!! Today was Superhero Day at school and Lily was Wonder Woman (costume courtesy of Uncle Carl and Auntie Alina). She loved her outfit so much she didn’t want to take it off, even for her after school physical therapy session (see bottom right photo of her rocking out on the stairs with her PT).

You wouldn’t believe it by these pictures but she was barely able to walk and was feeling emotional and uncomfortable earlier. She’s been extra lethargic these past few weeks, especially in the mornings. And this morning, the damned rash on her face came back with a vengeance. We have no idea what is causing it and it seems to come and go with no correlation to anything. And it’s super painful and itchy for her. Cortisone, bacitracin, even anti-fungal cream doesn’t do much to alleviate it. So far, what works best is a cold compress.

It seems like every day brings about some new, weird and random Rett symptom. It is a relentless and ruthless disorder. And through it all, my kid handles it with such grace and determination. She’s truly a Wonder Woman.

Trials and Tribulations

There is so much promising research happening with Rett Syndrome right now. For this momma, it’s overwhelming to digest. There are currently 3 clinical trials that Lily is eligible to participate in and all three offer the potential to help with some of her symptoms.

Clinical trials are no joke. We participated in one a few years back and it’s a lot of work. Lots of hospital visits and monitoring. And a new medication to remember to give her every day.

I’ve done a lot of poking around, reading medical papers, have consulted with two Rett specialists, a bunch of Rett mommas and have decided that Lily will be only participating in one trial. It should be starting in late fall and I’ll be sure to send updates.

In the meantime, we’ll just be enjoying life in our little oasis on the UWS, trying to get this kiddo to gain some weight. Come and visit if you’re in town!

Love,

C & L

What a ride

We didn’t make it to Florida this past weekend as Lily was too weak to travel. It wasn’t because of her tummy (which was the big concern last week at this time) but because she was battling a fever.

I got a call from school last Wednesday telling me that Lily had asked to go to the nurse. When the nurse took her temperature it was hovering around 100 degrees. Not too bad but the poor kid was feeling miserable. And she wanted to go home. So I rushed from work to get her.

By the time we got home, she was her normal, bubbly self. But over the course of the next 24+ hours, she would swing from feeling fine to just plain awful. At one point she had the shivers so bad that I had considered taking her to the ER. (Sidenote: high fevers can trigger seizures and as Lily is already prone to them, it was imperative to keep her fever regulated.)

On Friday (the day we were supposed to fly out) I took her to the doctor where we ruled out strep, the flu and UTI. Likely just a viral infection. I was hopeful that we could get to Florida on Saturday but when I checked her temperature that morning, it was not good.

So we’ve been home in NYC on this cold and blustery weekend. Cuddling up a storm, watching movies, and enjoying the visitors who have come to help out and cheer us both up.

This is the first morning in four days that she’s not been feverish. So tomorrow she goes to school. I’m still taking the day off work. I need some time to recuperate!

We are both so sad to have missed seeing our family in Florida. But I’m so grateful that we were only battling a regular kid issue. Kids get sick from time to time. And Lily handled it all with such grace. She’s amazing.