Summer, on a spring day

Posted on April 30, 2017 by mommabear0208

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

Posted on April 30, 2017 by mommabear0208

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!

Posted on April 25, 2017 by mommabear0208

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

Posted on April 21, 2017 by mommabear0208

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