Makes me mad!

Posted on February 6, 2016 by mommabear0208

Leisurely girls going for a boat ride!

It’s been a while dear reader… There have been so many stories percolating in my brain these past few months but I’ve not had the energy to put pen to paper (or more aptly fingertips to keyboard). Doctors appointments, kindergarten research, the worst bout of insomnia she’s had yet topped with coxsackie – there’s been a lot going on. Thankfully there’s been a lot of awesome and amazing stuff happening too. We went on a speedboat while visiting our family in Florida for the holidays which Lily LOVED. She is turning 5 on Monday. Also, Lily is getting really good at using her Tobii and there’s just one story that I have to share…

This happened one night when our dear friend Carlos was visiting in December. Lily and I were playing the sleep ‘game’. It goes something like this: after we go through our evening routine, I put her down in bed, tuck her in and say goodnight while shutting the door. Two minutes later, she jumps out of bed and knocks on the door. I go in and put her back down telling her it’s sleep time. Shut the door. She jumps out, knock-knock. And so forth.

Sometimes she’s fast and escapes from the room before I can put her back in bed. Kid runs into living room. Goes over to the computer and gently puts her hand on it (which means ‘Mommy! I want to listen to music!). I tell her, ‘Lily, Mommy said it’s time for bed so no music.’

She doesn’t like that answer so she runs into the playroom (which means, ‘Mommy! I want to watch a movie!). I tell her, ‘Lily, Mommy said it’s time for bed so no movie and no music.’

She doesn’t like that answer either so she runs over to the Tobii which is perched on a chair in the living room. Using the Tobii she says/navigates, ‘I have an idea! TV/DVD show!’ I tell her, ‘Lily, Mommy said it’s time for bed so no TV, no movie and no music.’

She then finds a button on the Tobii (one that I had never seen before) and says, ‘Makes me mad!’

And that my friends, is my almost 5 year old acting her age. I am one proud momma.

Speech-generating button on the Tobii that Lily uses somewhat frequently these days when she’s upset with Mommy!

Food

Posted on December 15, 2015 by mommabear0208

Here’s a note I received from L’s school speech therapist earlier today:

I just wanted to reach out to you and let you know that I offered to Lily some of my own gluten free vegan dark chocolate birthday cake here at school. I know she doesn’t eat gluten or dairy so I figured it would be a nice treat. She absolutely loved it and couldn’t stop giggling and reached out for more. The amount would be equivalent to 3 adult spoonful sizes. She very appropriately used her tobii during the activity. She let me know she was happy multiple times and said something new several times on her tobii to let me know it was different.

She had such a good time.

This kid has ALWAYS loved her food!

A beautiful sight!

Posted on December 10, 2015 by mommabear0208

christmas2015

It’s official. Lily loves Christmas. Well, at least she loves the tree and the decorations. This is now her favorite spot in the house. It warms my heart to watch her enjoy those twinkly lights.

It’s been a rough few weeks for us over here. My mom’s not been well (but thankfully she’s on the mend) and Lily had one hell of a stomach bug last week which threw off her sleep in a way that I wasn’t sure either of us would recover from.

We’re both still recovering from it actually. But she’s back at school and I’m back at the office and we are doing our best to stay awake during the day and ride the sleepless wave at night. And we’re BOTH looking forward to seeing Grandma and the cousins in Florida soon!

Happy Holidays to all you wonderful people.

Love,

C and L

Understanding cognition in girls and women with Rett Syndrome

Posted on November 15, 2015 by mommabear0208

In my quest to find an answer for whether or not to do the neuropsych, I came across this recent article. Here is a relevant excerpt:

It is extremely difficult to evaluate the cognitive abilities of individuals with RTT as these are masked by their motor, apractic and atactic difficulties, which limit normative evaluation. On the other hand, many research projects have suggested that individuals with RTT are able to learn [18-21], and that the learning skills can be enhanced with appropriate motivational factors [18] as well as that learning is sustained after a ‘washout’ period of the learning program has ended [18]. It is also clear today that individuals with RTT can learn new skills [22,23], including literacy [20,21,24], and that learning ability is sustained in individuals with RTT at all ages.

The article is insightful in many levels and the premise is basically that girls and women with Rett Syndrome need intensive and constant therapy/intervention throughout their lifetime to maximize their quality of life.

I’ve seen the positive effects of intensive intervention firsthand. And there is now some data to demonstrate that Lily is progressing both motorically and cognitively. For example, her first progress report for the year has come in and it is the FIRST TIME that the teacher at school has indicated that Lily has made significant progress in a few areas. It is most definitely because she has a Tobii at school now, and that her teachers and therapists are committed to engaging with her through it.

List 6 adjectives to describe the child

Posted on November 13, 2015 by mommabear0208

So… this whole kindergarten process is quite the ordeal. It’s like applying to university. I have to fill out 10+ page application forms and write essays, as do Lily’s teachers. This is what Lily’s teacher wrote when asked to use six adjectives to describe her: