So Lily’s communication device (the Tobii) arrived last week.  And it’s been sitting in its computer case on the floor ever since.  I briefly opened it up to take a look and quickly got overwhelmed.  I need my brother Matt (the computer guru) to help me figure out how to set it up. We are getting a private training next week on how to begin using it and in the meantime, I’ve gotten a print-out of the content which is on the device and am familiarizing myself with new symbols which will eventually become part of Lily’s vocabulary. This is going to be quite the learning experience for Lily, me, her dad, the therapists, and well, everyone else who interacts with Lily on a regular basis.  And I’ve been reading up on it, but putting theory into practice is another thing completely. Wish us luck!

L doing the ‘diaper dance’ in front of the Tobii, which is languishing in the computer case behind her.

It is 4.18am and Lily is FINALLY asleep.  Up until 4.17am, no one in this household had slept a wink.  I believe Lily had a manic episode.  She came back home around 6.30pm last night.  And was in a nutsy mood.  Maureen, her therapist, had a challenging time with her.  I had a challenging time with her.  I did everything a parent would do, and more, to help calm my child.  Maureen and I swung Lily in a blanket before she left for the evening.  I piled pillows on Lily and laid on top of her (three times I did this) in an attempt to soothe her nerves.  Joint compression, massage, singing, endless singing, playing soothing music, melatonin, spritzing lavender essential oil on her crib, bringing her into my bed, putting her back in her crib, watching a movie, giving her another bottle, changing another diaper.  Nothing worked.  And I could tell that all we needed was time.  Time for her to exhaust herself to pass out and fall asleep.

Now she’s asleep.  And I’m wide awake.  Go figure.

But I’m now doing what I do best – research.  And I came across a few new Rett sites (see the sidebar), and have found another mommy blogger of Rett; I googled ‘Rett Syndrome and mania’ and came across this post.

And then of course, I read through her other posts.  And it scared the shit out of me.  Her daughter has a really severe manifestation of Rett.  And after a night like tonight, I’m just not able to shake the worry about what the future holds for my sweetie.

Send us prayers.  We need them.

C and L

Hi friends and family,

Lily and I spent the past few weeks traveling up and down the east coast visiting our cousins and wow, was it great to be pampered and showered with so much love. Cousins truly are one of God’s greatest gifts!

We’ve also been hosting out of town visitors (huge shout out to Wagner!) and making new friends (we recently had a play-date with another Rett sweetie who lives not too far away). I’m telling you, we’ve been surrounded by so much love and acceptance and understanding and kindness and giggles, lots of giggles. We are two very lucky ladies.

So – on to the big news….

Announcement #1:

Lily’s assistive eye gaze technology machine (called the MyTobii) is arriving at some point this month.  It could be as early as next week!  I’m so very excited about this and am trying to educate myself as much as possible beforehand as I feel like we will be traveling to a new country where we don’t know the language.  And you know how I like to have some sort of competency in languages when I travel to new places.  The My Tobii looks like an i-pad but it is so much more:

http://www.tobii.com/en/assistive-technology/global/products/hardware/tobii-i-series/

Announcement #2:

Lily will be going to William O’Connor in Midwood (a YAI school) for preschool.  She starts in September!  I’m a bit disappointed that we aren’t moving back to Manhattan but WOC is a far superior school to the place we had initially considered.  Where is Midwood you ask?  Well, it is in Brooklyn.  In deep Brooklyn.  Where the houses look like this:

Midwood is very far from mid-town Manhattan (where I work) so I’m looking to move to a neighborhood which won’t be far from Lily’s school and won’t be too far away from my office.  Prospect Park South is likely the hood we will go to.  Let me know if you hear of anything for rent out there!

Announcement #3

Mark your calendars and get your butts to Hoboken on October 5th for the Rett Strollathon.  Click here to join Team Lily/MMC or to make a donation.  I’m also recruiting as many work colleagues as possible as every employee from MMC (where I work) who participates, the Company provides a $25 donation to the organization.  Please help me promote this event and help us beat our fundraising goal of $5,000.  Additionally, my sweet, amazing cousin Maria is planning an after-party on October 5th at a nearby restaurant in Hoboken.  We will be sending a separate announcement about that soon.

And that, my friends, is all I have.  For now.

Love,

C and L

Playdate with our new friend!

Silly uncle Wagner! So much has changed over the years, yet so much has remained the same…!

I came across this short article the other day which REALLY described – spot on – how and where and why we mommas of special needs kids find the strength to do what we do.  It truly is a joy to ‘care’ for my L-bug, even when we are on vacation, at the hospital.

Click here to read the article (I’ve not figured out how to insert it correctly into this post): strong enough

Sitting pretty at the Mother’s Day party in Millburn, NJ, May 2014