My superhero

Even though last night was a tough one (she may have had a seizure and it made her very upset), today Lily was excited about going to school as it’s ‘superhero’ day.

This kid is MY superhero.  Every day.  She smiles in the face of adversity.  She has fierce determination.  She is silly.  She is smart.  She never gives up.  And she rocks a jumpsuit.

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Superheroes live in the hearts of little kids fighting big battles.  #reverserett

Tellin’ time

orange watchA few weeks ago, Lily lost a tooth and got $5 from the tooth fairy.  She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch!  You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition.  A watch is the perfect accompaniment to this activity, no?  She’s so proud of this orange watch.

Earlier today, I got this text from Elaine and it made my heart burst with pride:

It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii…  it was so exciting to see!

We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!

 

Summer, on a spring day

What a day we had today! It started at Central Park where we were meeting my grad school friends to celebrate our 15 year SAIS Bologna anniversary (for those of us who live in NYC and who couldn’t make it to Bologna).  It was a hot and muggy morning. But Lily and I had a great time catching up with old friends and

We spent four hours in the park – eating, dancing, singing, crashing other people’s parties and listening to live jazz. On the way home I took Lily for a late lunch to Playa Betty’s (her favorite restaurant on the UWS) and then we walked over to Riverside park. You see, we were on a quest to feed the birds. This is something she requested to do earlier in the week. Alas, no birds were to be found. But we will try again tomorrow.  I hear we may have another day of summer weather.

Note from school

This note came home on picture day:

Lily had a fantastic day!  She was so excited for picture day.  She looked like a model in her pictures.  She posed very well for the photographer.  She worked so hard the rest of the day.  Lots of energy today!  Miss Ariel (one of Lily’s therapists) said, ‘Lily, I want to hear your voice.’ And she yelled for us!  She also requested ‘clementine’ ‘smoothie’ and ‘juice’ during snack time.  Then she said it was ‘yummy.’  Also, one of her teachers was talking to Lily and the teacher said, ‘I’m not sure if you heard me Lily’ and Lily replied (via the tobii, with zero assistance), ‘I understand.’   This kid!

We get the photos in a few weeks.  I’ll be sure to share them.

Picture day!

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Tmorrow is picture day at school. You’ll see from the note she wrote (transcribed by her speech therapist and left on the refrigerator for me) that it’s a toss up between her silver sparkly dress and a pair of overalls. As of tonight, she’s leaning towards the overalls.

i love this silly toothless kid!

 

Stronger

The past few months have been extremely stressful so writing posts has not been a top priority.  However, I didn’t want to leave you hanging for too long.  I’m proud to say that Lily has been showing improvement in many areas.  Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part).  Her breathing is still an issue though that too seems to have gotten better.

I have been obsessed – OBSESSED – with her caloric intake.  And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger.  She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating.  It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt.  Whatever.  The kid is eating.

But I can’t completely relax.  We still have days that are difficult for her.  Really difficult.  Heart-breakingly difficult.  And I’m trying to shake the hangover of what she went through these past few months but I can’t completely.  Rett Sydrome is always lurking around and we just never know when it will pounce.  I can’t make this the focus of my attention as it will destroy me.

So I remain in hope.  And there’s good reason.  Last month two significant announcements were made about Rett research.  One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls.  And the other was regarding the path toward a cure using gene therapy.  Awareness-raising and fundraising are now more important than ever.

Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.

Love,

C and L

 

Spring Break 2017

Spring Break 2017 in South Florida with Grandma and her cousins!

Throwing (almost) all the rules out the window

For at least two years, Lily was on a strict GAPS diet (basically grain free, dairy free, sugar free). When she started preschool, I started letting her have pizza (pizza Fridays!) and a nibble or two of a cupcake if there was a party at school. Safe to say, 90% of the time she was eating clean and healthy food. And she loved it

But then about 3 months ago, when things started heading south for her, one of the things that was impacted was her voracious appetite. She no longer harasses me in the morning to get her smoothie. Now she won’t even open her mouth to drink it. Lunch and dinner are pretty much the same. Mouth shut, not interested in eating.

Lily was a slight kid to begin with (even when she was eating voraciously) but now that she’s lost interest in food (for the most part), she’s gotten dangerously skinny. At this point I’m feeding her anything that will get her to open her mouth. She’s had pizza for lunch, and dinner at least 4 times this week. Tonight we ordered a bacon cheeseburger with fries and a vanilla milk shake for dinner. Anything that will get this kid interested in food again. She needs to gain weight. Urgently. And she will.