Lily, Lily legs

Posted on April 9, 2016 by mommabear0208

The other day I posted the below message in Facebook. I thought it went up on the ‘My daughter has Rett Syndrome’ family group. But it was posted to the greater FB community as well. And I’m grateful for my error. I got so many fantastic recommendations from both groups. Now to choose which chair support to buy….

Here is the post:

So Lily is getting REALLY long. Which is not surprising as I’m 5’11” and her dad is 6’5″. But it’s starting to cause an issue for when we go out to dinner. Or go grocery shopping. Those Caroline’s carts have not made their way to Whole Foods in NYC (or any other grocery store for that matter). And when eating out, she can still fit in a highchair (she’s skinny) but she’s literally got both feet on the ground! If I don’t have her in the highchair, she will roam the restaurant looking for cute boys to steal food from. What do you do when you take your girls out to eat, who are roamers, and don’t fit into highchairs anymore?!

Those piggies are flat on the ground!

Rett Syndrome WILL be the first curable brain disorder

Posted on March 30, 2016 by mommabear0208

Love this Psychology Today article. There’s nothing all that new in there for us Rett nerds, but it’s great that the message that Rett may be the first curable brain disorder is reaching the masses!

Happy Spring

Posted on March 24, 2016 by mommabear0208

Strolling in the springtime

Lily and I are so excited that the flowers are starting to bloom! It fills us both with so much excitement and hope.

Here are a few Rett related things that have also been inspirational to me over the past few months that I wanted to share:

Moving video about living with a child with Rett Syndrome
The Today Show piece on Rett Syndrome
The scientist who discovered the genetic marker for Rett Syndrome is coming to NYC (and I’m already signed up to see her speak)
An upcoming Rett fundraiser in NYC where I’ll get a chance to catch up with some of my awesome Rett momma friends (and for those of you in the NY area – would love for you to join me!)
An announcement from RSRT about the $9mm that was awarded last year to research (psst some Rett momma friends and I are getting together to brainstorm on how we can double that number for 2016)

I hope to see some of you at the fundraising event next month!

Love,

C and L

5 years old!!

Posted on February 8, 2016 by mommabear0208

Lily is so excited about her birthday. We had nice, small celebrations with some family over the weekend. They spoiled the both of us. Today I’m heading to school for a pizza party with her classmates. So! Much! Fun!

It’s going to be quite the week for us girls. Party at school today then I have to rush to midtown to do a presentation for an important constituent group. Tomorrow night I’m going to a talk on the kindergarten process. Wednesday I’m taking Lily to the endocrinologist (the latest specialist we need to see). Then Thursday is the meeting with the DOE to talk about kindergarten placement. Somehow I will manage to squeeze in a full work week on top of this.

Lots going on. Most of it good. All of it for my sweet Lily. Who is now 5! No way Josè!

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.