Tag Archives: special needs

Sixth grade: seizures and screaming and scoliosis and Hope?

Posted on by

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
Advertisement

Adventures with Mom

Posted on by

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

It takes a village

Posted on by

It takes a village – literally – to get this kid places. Trick-or-treating is just one example. Below are a few photos of behind the scenes efforts, and a few cute ones of her thrown in for good measure.  

Lily wanted to love Halloween, and we did get a few smiles from this cool cat. But there was also tears and exhaustion and not having the energy to walk at times.

We are both so lucky to have so many angels on earth helping us, and they came out in droves on Halloween!

So we went trick-or-treating New York City style, up and down the streets of Columbus Avenue and through the cross streets that go all out with decorations (west 68th and 69th Street FYI). It was an exhausting, but mostly fun time and we got entirely too much candy. Come over and help us eat it before we turn to sugar cubes! 

Never-ending attempts for normalcy and fun memories

Advocate like a mother

Posted on by

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.

 

Summertime, and the living is busy

Posted on by

This kiddo was super excited to start her summer program today. Did you know that kids with Rett Syndrome, or mostly any disability for that matter, need year-round therapies so they don’t regress? So it will be a busy summer of physical therapy, occupational therapy, speech therapy, reading, spelling, math and her favorite: hydrotherapy.

And it will most definitely be a summer filled with blueberries and giggles, and lots of wonderful memories.

Excited for her first day of the summer program

First day of second grade v last day of second grade

Swimming like a mermaid

Posted on by

This week we’ve been down in South Florida visiting family and friends. We’ve been able to accomplish so much in such little time… like mommy getting to see not one, but THREE of her high school friends. And of course spending as much time with our family as we can. And swimming. And eating. And having dance parties. And swimming some more.

The weather has mostly been sweltering. But it hasn’t stopped this kid from picking up new skills in the water. She is doing all sorts of amazing things independently in the pool. And the ocean (with the courtesy of her swimmies). Here are a few shots from our visit.

Happy summer!

Love,

C & L

Better and different

Posted on by

Last Friday was a pretty big day for us girls. You already caught a glimpse of Wonder Woman and heard that she was having a tough morning. But so many other things happened on Friday.  Even though this kid was feeling like crap in the a.m., she still made it to a dentist appointment.  She was brave, but man she hates going to the dentist.  Who doesn’t?

Then it was to school for super hero day, then PT and afterwards, I took her for a haircut.

She’s been wanting, and needing one for some time. And a few weeks back we had an appointment, but that was the day Lily fell at school and had to get 4 staples to hold her scalp together. Oh, that was a fun day indeed. However, I digress…

As many of you may know her hair is quite a topic of interest. We have had many conversations and even more debates about what she wants to do with it. For a while we were creating a weekly hair menu where she would plot out every hairstyle for each day of the week (see below).

But the debates about her haircut were always the most interesting. She would tell me, incessantly, that she wants bangs and short hair. To which I would reply, ‘short hair in the summer isn’t a great idea’ and wax on as to why. Her response was always quite diplomatic, ‘I can see your point’ she would navigate to on her Tobii (completely independently I must add); not that she agreed with me, but that she understood my reasons why.

In the end, she won. Mainly because the person cutting her hair cut it much shorter than was discussed. But Lily has been so pleased with the result.  She told her teacher yesterday that her hair is ‘better and different’. Why yes it is, smart, sweet, stylish child of mine.

Wonder Woman

Posted on by

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.

Aloha!!

Posted on by

Lily’s 8th birthday was such a success. In the lead up to her birthday (and the subsequent week), she was ecstatic. Birthday parties, Valentines Day and Hawaii? All in one month? It was almost too much.

But not really – seeing her so happy and (mostly) healthy – especially at this time of year – is such a relief.

We are day 3 into our Hawaiian adventure and this kid hasn’t stopped beaming. Thank you Make-a-Wish! Here are a few shots… leaving for Honolulu at JFK, getting a tour of the cockpit with the captain of the plane at landing, riding a limo (with Urszula), relaxing at the pool/beach and partying it up at a luau! More photos to come.

Lily’s luau birthday bash

Posted on by

This kid turned 8 today. Can’t begin to explain how proud I am to be her mom. In anticipation of her upcoming Make-A-Wish trip to Hawaii, we celebrated with a luau!

The party was a success. It started with a ballet class taught by New York City Ballet (check out Lily independently getting her feet into 5th position in the second set of photos) and then the luau at school with pizza, cupcakes, giggles and dancing. Lots of dancing!!! After school we had a play date with her friend Xan, followed by dinner at her favorite restaurant. And then we went home, exhausted, full and happy.