A visit from the tooth fairy

Posted on July 11, 2016 by mommabear0208

Was anyone else aware that on top of all the more well-known symptoms of Rett Syndrome (like loss of language, physical disabilities, breathing problems, severe anxiety, sleep disorders), there are so many lesser known ones, like excessive tartar buildup? Yup, my kid has that too. So what does it mean? We go to the dentist every 6 weeks for a cleaning.

Thankfully we’ve found a wonderful dentist who puts Lily completely at ease. For example, the last time we were there for a cleaning, we had to get her two bottom front teeth pulled (her baby teeth had popped up behind them and were there for a while). This kid didn’t cry once – not when they gave her the novocaine. Not even when they pulled her teeth. I cried. But not her.

Earlier that morning, I explained to her what was going to happen. And I told her that if we put her two baby teeth under her pillow, the tooth fairy will come. She became very excited.

That evening, she and one of her therapists had a conversation about it and they wrote a letter to the tooth fairy. All the words underlined were her exact words on the Tobii. The tooth fairy found it when she was picking up her baby teeth and putting money under her pillow. And it made this tooth fairy extremely proud!!!

Graduation!

Posted on July 11, 2016 by mommabear0208

I’m such a sucker. Of course I had to buy the ridiculous preschool graduation photo. I mean, it’s the cutest thing in the world. Second to her class photo, which was taken only a few months before.

It’s been a quick two years for us. Lily has grown so much, both physically (at least 5 or 6 inches) and intellectually (see next blog post). We’re going to miss that little cocoon of a preschool. The teachers, the para, the therapists, even the administrators, are all amazing there.

And I was so touched when the principal asked me to give the preschool commencement address. I wasn’t quite sure what I was going to talk about but I knew it had something to do with all of the wonderful people I have met, because of Lily. Thankfully my little speech went off without a hitch.

However, the run-up to the graduation was touch and go. I wasn’t even sure Lily was going to be well enough to attend. A week or so prior, her appetite went. Her sleep meds stopped working (again). She started having severe panic attacks. And she was getting clumsier and weaker. It was a scary period. The morning of graduation, I wasn’t sure whether to take her to the ER or to school.

Thankfully she woke up that morning feeling much better. She even managed to have a little bit of her smoothie. Shamekia (her beloved nanny) met us at our home that morning and helped us get to school. Lily did not want to miss graduation. She had practiced so much. And you should have seen her up on that stage, dancing and laughing and feeling like a star. It was a beautiful sight.

I’m so glad she went because she had such a fun morning. She was surrounded by all the people that she loves – her mommy, her nanny (mommy #2 – in the yellow dress), her para Urzsula (mommy #3 – in the striped shirt), her daddy, teachers and therapists, past and present and all of her school friends. She had a blast. And thankfully she started eating and drinking again that day. And from that day forward, she’s been getting stronger and stronger.

We’re still struggling with sleep. And the panic attacks come and go. But damned if we’re not going to have the best summer ever.

A day in the life…

Posted on June 5, 2016 by mommabear0208

The ever talented Suzanne Fiore came over the other week and beautifully captured a Saturday afternoon of Lily time.

Click here to see more of the beautiful photos Suzanne took and read about a day in the life with Lily. And please feel free to share with your own social networks. #CureRett.

A different kind of learning

Posted on May 27, 2016 by mommabear0208

Lily continues to impress both her home-based and school-based teachers and therapists (all 15 of them). This kid is super smart and silly, and most days she’s doing amazing things with communicating on the Tobii. Just the other day she had a conversation with her home teacher Denise to tell her that she was ‘angry’ and ‘greedy’ at school because she couldn’t play with the computer when she wanted to. And Denise explained that Lily can’t always get what she wants when she wants.

Oh, the perils of being an only child, raised in a single-parent home and having special needs on top of it. Creating boundaries and holding to them, reminding her that yelling is not nice, that sharing is important; I’m doing the best I can. But sometimes I’m not sure it’s enough.

She continues to be (mostly) sweet and loving and loud. I’m pretty sure that most parents of 5 year olds question their parenting skills and are driven mad by the noise and the insubordination. This brings me a strange sort of comfort. Makes me feel almost ‘normal’.

But I digress. Learning. It’s different for girls with Rett Syndrome. Some days this kid is on fire – engaged, communicative and creative. But there are those other days, the days when she didn’t get enough sleep or something else Rett related is going on, that she really struggles. I’m grateful that she, and I, have such a great support system who understands her ups and downs and are so creative in their approach.

Admiring her artwork – and her favorite ‘literary’ characters

Snapshot of her play/therapy room (PS someone got her first big-girl tooth!)

Lily needs time to be Lily

Posted on May 14, 2016 by mommabear0208

Almost daily, that phrase pops into my head – Lily needs time to be Lily. Her very first ABA therapist, Ann, said this when Lily was only 18 months old and it struck me – even then. This kid spends most of her days working – trying to do things that you and I take for granted. Like picking up a fork and putting it to your mouth, walking a straight line, talking. And you know what? Sometimes all the work has to just stop. Lily needs time to do the things she wants. So every day, I try to give her that opportunity. This evening, I took her out to dinner to celebrate the end of a busy week. She chose the restaurant. And then afterwards, she chose where we walked and what we did. Tonight we crashed a jazz concert. Who knew this kid liked jazz??? She won the hearts of everyone in the crowd, including the musicians. She has a way with people. So what else does this kid like to do?