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

Decorating boxes with L’s artwork

Preschool Jitters

Posted on August 13, 2014 by mommabear0208

Below is an email I sent earlier today to the Brooklyn Speical Needs Parents group, which is an amazing support group.

Hi parents,

I’m starting to freak out about my daughter starting preschool in a few weeks. She is preverbal and has a rare disorder (Rett Syndrome) which presents a slew of challenges for her.

Her EI therapists have been like family and they’ve created so many successful programs for her and know how to work with her, challenge her (ever so gently – when she’s in the mood), calm her down, and, most importantly, mitigate her continuous physical and cognitive regressions (one of the many challenges of Rett). We are sad to see them go.

I’m planning on sending the school (WOC Midwood) an overview of her likes/dislikes, things to help calm her down if she gets agitated and an overview of key programs her therapists have been working with her on. I’m going to mail this in with her registration form.

I’m confident with the choice of the school. I’m just less confident about the first few weeks and how she will adjust.

Any advice, tips, tricks that you could share?

Additionally we are moving shortly before school starts so that’s going to be an adjustment in itself.

Many thanks in advance,
C, mom to L (who is likely less stressed about preschool than her mother)

How is it that she’s old enough to go to preschool already?!

Heavy

Posted on August 11, 2014 by mommabear0208

We were at a family party this past weekend and one of my cousins, upon picking up L, commented to me on how big and heavy she is getting. She is growing. Leaps and bounds. And this is a great sign for many reasons – one being that she’s getting adequate nutrition (many Rett sweeties have growth issues, due to feeding issues, and though we aren’t out of the zone of fear on this – it’s a crap-shoot until she reaches about 15 or whenever you stop growing physically – it’s definitely a sigh a relief at this point, for this momma).

I’m going to have to start stregnth training. A very smart Rett momma gave me a piece of advice shortly after we got the diagnosis – she recommended that I start lifting weights as the physical toll of having a child, then young adult, then adult, with Rett, is very real. And I’m already feeling some pain. My left shoulder. My back. My neck. I always say that L is my walking gym. But I do need to invest in myself so I can maintain the physical stamina needed to care for her.

It’s just one of the many things on my to-do list. Actually, it’s not quite on my to-do list. It’s on my ‘once everything from my to-do list is done, I can then start on this and a slew of other things’ list.

What is front of mind right now is moving L from a crib to a big-girl bed. She is outgrowing that crib. But we can’t make any switches until she gets herself settled into our new home. Eventually I’m likely going to put her mattress on the floor and create a pillow barrier around the entirety of it. Oh, I’ve spent many unslept nights thinking about, and researching this. But this is likely not of interest to you, dear reader.

Oh, but back to this big girl – she is so happy and full of joy, and is loving the long summer evenings when she and her momma go on strolls and get caressed by her friend, the wind.