Anxiety

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Adventures with mommy! Pete the cat book launch followed by lunch at 5 Napkins and a stroll in the park (mom had to do minimal carrying of child)

I know these photos don’t depict a child struggling with severe anxiety but she is.

Screaming and crying for hours at night, unable to be consoled in any way, it’s been heartbreaking. And exhausting.

I’ve been in touch with her specialist. We are considering changing her sleep medication. She’s only on one medication for sleep. Clonidine. And am so grateful that we’ve been able to keep the drugs to a minimum so far. Most girls with Rett syndrome are on upwards of half a dozen medications.

Clonidine obviously hasn’t been working so great lately. But I may have found something that has – continuos release melatonin. It never worked for her in the past, but the past two nights she’s been sleeping. Is it luck? Is it melatonin? I don’t know. But I hope we continue with this streak.

My superhero

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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

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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

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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.

We spent 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

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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.