On swallowing

Posted on September 23, 2014 by mommabear0208

There are SO MANY THINGS that each of us take for granted in a given moment. Swallowing is one of the more recent ones I’ve come to realize. Imagine it. Not being able to swallow.

Now imagine watching your child losing her ability to swallow. In front of your eyes.

I don’t even want to be writing these words. I don’t want to be thinking these thoughts. But this is a very big concern. And what L and I need right now is a lot of positive vibes, prayers, and thoughts.

I scheduled a swallow study for next month and I’m really hopeful (almost to the point of being confident) that this is just a phase that Lily will bounce back from.

Who knew that a swallow study was a thing? That doctors specialize in this kind of stuff?

There is so much that I am learning about that I’d prefer never to know.

Regardless, I am going to focus on the positive. L is running. L is happy. L can sometimes swallow. Sometimes not. Her weight is good. Her coloring is good. Her hand function hasn’t gotten better but it’s not gotten worse. She’s been (almost) sleeping through the night. She loves music and giggles and being tickled. She loves her mommy. And her mommy loves her.

Ode to teeth grinding

Posted on September 20, 2014 by mommabear0208

Oh teeth grinding, how I love thee
All morning, all afternoon, and all evening long
You are the noise that comes out the most from my child’s mouth
And I love her so much, so I must love you too
I must love you too

For if I do not, I surely will crumble
And that will do neither of us good
So love you I’ll do

Blueberries and Giggles!

Posted on September 15, 2014 by mommabear0208

It’s been a while, I know. But we’ve been busy ladies. Vacationing, moving, starting school, getting internet finally installed in the new place… the past few weeks have been a whirlwind of activities.

As usual, Lily is taking it all in stride. And I’ve had my fair share of help getting things done. My cousin Maria and friend Jill helped me pack up the old place. My friend Michael completely renovated my kitchen and designed the new place (from living room to patio) to make it feel cozy and welcoming for me and my sweet girl. Miriam and Don (and Maya and Evan) were kind enough to host us on a vacation in the ‘burbs, Angela and Bruce and Peter helped me unpack and set up (and I have to mention that Michael unpacked more than half of my boxes before I even officially moved in). I guess you can say I’m taking it all in stride too, with a little help from my friends!

Lily loves her new home. We were both nervous walking in the door as Michael wouldn’t let me take a peek at the progress. But when we arrived, we were both blown away. I think L was especially excited because he greeted us at the door with her two favorite things: blueberries and Billy Joel’s ‘just the way you are’ playing on the stereo.

Blueberries and giggles and Michael Conti!

L’s first day of preschool went off without a hitch (though the days leading up were fraught with calls to the DOE and the school ensuring all of her paperwork was in place). She was/is such a brave little munchie!

Waiting for the bus! Day ONE of preschool.

And today is another first! She’s home sick with a bit of a cold. Those preschool germs have infiltrated our home.

Still pretty when she’s sick

Talking tools

Posted on August 26, 2014 by mommabear0208

So…. it’s been quite a whirlwind lately. Boxes and Ikea runs and back and forth to Montefiore Children’s Hospital (me, thankfully not L)… the summer is slipping by.

But so many good things are on the horizon. Tomorrow is the big move. My dear friend Michael is orchestrating the move for me (and he’s handled my kitchen renovation as well). He’s been a godsend. And he’s packing us off for a few days so he can settle the apartment for us while we take a mini vacation to the burbs, courtesy of my cousin Miriam!!! How lucky are we?!

So, why have I been back and forth to the Children’s Hospital? Well… the first visit was to take a workshop with Lily’s new speech therapist who is specializes in teaching girls with Rett Syndrome. I knew she was kind of a rock star, but I really had no idea how much of a rock star until I took this workshop. Lily is going to be in such great hands. And she’ll be communicating with us (and I mean REALLY communicating) in no time at all.

The second trip to the hospital was to get trained on how to adminster testing to Lily via eye gaze tracking ‘games’. I was put in touch (via the rockstar speech therapist) with a neuroscience team at Cambridge University, in conjunction with the Einstein School of Medicine, who are working on cutting edge communication and cognition tools for infants and toddlers with language impairments. So, for the next few days, while we are on vacation, and then settling into our new home, I will be running code and taking time based on Lily’s interaction and interest in these games. Which means that I’m carting approximately $50,000 worth of machinery around. But Lily, and the machinery will be in good hands.

What they’re hoping is that the findings from Lily’s and other Rett sweeties results, the team can get further funding to expand their program. What I’m hoping is that Lily will sit still long enough to provide meaningful results!

Never a dull moment.

Cha-cha-cha-cha-changes….!

Posted on August 17, 2014 by mommabear0208

David Bowie knows what he’s talking about. ‘Turn and face the strain.’ And boxes, upon boxes… And sore backs (hence, the strain). And sleepless nights.

But it’s all good. Change is inevitable. It happens every day. And if you don’t embrace it, it can destroy you.

I guess I’m also pretty excited about this new chapter. For many reasons.

1. It somewhat fulfills my wanderlust. Prior to having L, I moved approximately every two years – to a different country, or city. I did this for about a decade. Italy, Switzerland, England, Singapore, DC, New York (this is not in sequential order). Every time I moved, I sucked in my breath, closed my eyes and hoped for the best.

Of course I didn’t. I’m too strategic to be so thoughtless. But there IS a part of the unknown, the new, which is thrilling. And I’m looking forward to it.

We’re not moving countries, or even cities. But we are moving to a different neighborhood. I’m not sure if I can say I’ll miss living in Greenpoint (I always commented that L and I were the only two people in the neighborhood without tattoos). I think our next neighborhood will be a much better fit for us girls. Who knew I’d become a brooklynite?

2. It’s TRULY a new beginning for me and L. Having her with me (almost) full-time, getting to giggle with her almost each and every day… Wow. I don’t think I allowed myself to think about how much I missed her when she wasn’t home with me as much.

3. Lily is starting school! I just read through a bunch of Rett sweetie’s profiles on the site http://www.girlpower2cure.org and it filled me with so much inspiration. Reading about how these girls are enjoying preschool, making friends, learning and playing gave me a boost of confidence about this milestone.

4. I get to throw a ton of stuff out and/or donate it or give it away. There’s something really fulfilling about getting rid of the clutter. It is cathartic. 20 huge bags went to Goodwill. And I’m not finished…

We are moving in two batches. I’m trying to minimize the disruption in L’s life so the boxes are going first (likely this coming Thursday) and then the furniture is heading out on the 27th. This gives L an extra week and a half with her beloved therapists.

I’ll write a post next week about the therapists. These amazing people who have dedicated their lives to helping children, I didn’t even know that this world, that these people existed prior to needing them in our lives.

That’s all for now.

Love,
C and L