A great day!

Posted on July 25, 2017 by mommabear0208

I just got this note from Lily’s teacher. After yesterday (we were at the hospital for a scheduled appointment for most of the afternoon – she was a champ throughout), this kid deserved to have a great day!

Lily had a great day! She was hungry at the end of the day, and was drinking more of her smoothie as she walked out of class. She may want a snack when communication camp is over. I gave her a blueberry cereal bar, which she loved (recorded it in her food diary). She squealed with delight when we brought it out. At recess, she was walking up to kids from other classes and giving big smiles. It was awesome! She was using her hands a lot today. With an elbow tap, she waved several times (at Ally and then again at the student in the attached picture, Jamie). She also gave a high five. She kept her hands in the shaving cream without support for I think 27 seconds! She also was playing with a switch operated toy in which you push a button to make a toy dog walk/bark. She was laughing and working hard. Great job sorting during math and working on letter ID activities as well.

I’m so proud of this kid!

A hell of a disorder

Posted on July 18, 2017 by mommabear0208

What a difference a day makes. Yesterday she could barely stand. Today she walked to school all smiles.

She was super wobbly when she woke (unfortunately this is quite common most days) and she only had a few tiny sips of smoothie this morning. But once I started talking to her about her day (school with friends, and then summer camp), she perked up.

I’m grateful for these mornings when she can walk to school. And it’s in these moments that I remind myself how lucky we are.

We have a few big doctors appointments coming up. Next week we are checking in with the nephrologist about the pee situation (which is still a pretty big issue). And then in August we are seeing the GI doctor. This appointment is the one I’m dreading the most. You see, Lily has lost 3.5 pounds since February. This is a lot of weight loss for her tiny frame. We will be discussing whether she needs a feeding tube. Her eating has not returned to the levels needed and it is concerning (to say the least).

I will keep you posted. In the meantime, we will continue to make the most out of this summer. This may just be my kids favorite season. And damned if we’re going to let Rett Syndrome get in the way of our fun.

Someone’s having a fun summer

Posted on July 14, 2017 by mommabear0208

Finally! Her kindergarten headshots. Lily chose her overalls instead of her sparkly dress.

The days are slipping by. I keep meaning to post but by the time I get to even thinking about it, I’m too tired. This kid has been keeping me busy! Lily’s been enjoying summer school, summer camp (an after school program for kids who use communication devices), weekends in the country and outdoor dining. Here are some fun photos from the past few weeks.

Backstage at Mary Poppins at the Paper Mill Playhouse with the Salerno-Abrahams! Dream come true for Lily Poppins.

Boston Corners weekend fun!

Performing at her school’s moving up ceremony with her classmates and getting her certificate of achievement

My superhero

Posted on May 19, 2017 by mommabear0208

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.

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

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.