The stairmaster

What a great weekend…  But of course, it’s always a great weekend when Grandma’s in town!!!

We were socialites on Friday evening.  It was girls night out with Maureen, Auntie Angela and Grandma…

Socialites

We spent time frolicking with our playgroup friends on Saturday morning and then climbing up the stairs (all by herself I may add) at the park to get to the swings.

Swings

And we did LOTS of giggling.  I mean LOTS.  Between me coming up with new songs to sing (currently L’s LOVING my rendition of the opening song to ‘A Chorus Line’) and Grandma just being Grandma, this little girl was full of non-stop laughter.

And… I don’t want to jinx anything but I may have just found us a new home!!!  More soon on this.

Love,

C and L

 

 

 

 

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“And though she be but little, she is fierce.” – William Shakespeare

Fierce

Check out that faccia!  I mean – seriously…. she’s just the best.

Even when she doesn’t sleep at night.

Even when she goes through yelling spells.

Even when she refuses to listen to me.

She comes home to me tomorrow night and I’m bursting at the seams to see her again!

Advocate and mother

Tomorrow is a very big day.

It’s the day that we discuss the kinds of special services Lily is going to need in preschool.  I’ve already presented the district administrator (decision-maker) with a letter from the Rett specialist emphasizing the need for certain services.  Thankfully he complied with much of what was requested.  And he agreed to the preschool location, and to the classroom size. BUT.  But…

There are additional things that MUST be put into her IEP (individualized service plan for those of you not familiar with special needs lingo) which have not yet been granted.

It pains me as a mother to push for my child to have hour after hour of therapy.  I want her to enjoy preschool and to learn to socialize.  I am grateful for the NY Early Intervention program she’s participated in these past (almost) two years but it definitely lacks in the social skills enhancement category.  It is all one-on-one instruction (and for Lily, that means 30 hours of one-on-one instruction).  Preschool is going to be fantastic for her as she is such a curious and smart little person and is definitely interested in others.  But she can only take it so far as she can’t speak  (yet).  And she doesn’t have great hand use.  So – imagine trying to have a conversation or bond with someone when you can’t talk or use your hands.  My sweetie.

I digress.  Where was I?  Oh yes.  Basically tomorrow I need to advocate for Lily to get A LOT of services.  A lot.  Which means that she will be getting pulled out of the classroom many times, on a daily basis, missing so much of the socialization (and beauty) of preschool.

I want my sweetie to relax and enjoy and not have to work so hard all the time.  But I know that if we don’t keep up with all of her therapies (and then some), she will regress.  We see it every few weeks when the therapists try to pull away from a program which Lily has mastered to get her to learn something new.  A few days, or weeks later when we go back to the old program, she can’t do it.  She has to be retaught.  These programs are things like shaking a maraca, brushing her hair, going up and down stairs.

It is heartbreaking.  But Lily always relearns it.  Relatively quickly.

Hence the need for intensive, constant services.  I wonder when, if, it will ever end for her.  We’ve been so lucky with her therapists that they are so loving and kind and make learning fun (most of the time).  I pray that this will continue through her school years.

I pray that we find a cure soon so she won’t have to struggle so much.

And please say a prayer (or send a positive vibe – whichever you prefer) my way tomorrow as I’m feeling really sad that this meeting even needs to happen.

Love,

C and L

 

Preparing for preschool.  Learning 'quiet hands' while watching Zac Effron (her favorite).

Preparing for preschool. Learning ‘quiet hands’ while watching Zac Effron (her favorite).

Me, tomorrow.

Me, tomorrow.

And now what?

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 My Tobii (in the computer case behind her)

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

Resilience

re·sil·ience
riˈzilyəns/
noun
  1. the ability of a substance or object to spring back into shape; elasticity.
    “nylon is excellent in wearability and resilience”
  2. the capacity to recover quickly from difficulties; toughness.
    “the often remarkable resilience of so many British institutions”
Lily and I know a thing or two about resilience.  She is faster at recovery than I am.  But then again, she’s 37 years younger than me!
Thankfully, things today have been much calmer, balanced and mellow.  Of course, it is 10pm on Friday night and Lily is still up, chirping happily in her crib.  But that’s starting to taper.  A sure sign that she will fall asleep soon.
We were both a bit shell-shocked after the night from hell.  Lily promptly woke at 9.30am on Thursday (after having finally fallen asleep at 4.17am just a few hours before).  I dragged myself out of bed to get her.  Thankfully I was right enough in my mind to tell the nanny to come over that morning and help out.  Even though I had called in sick to work to care for Lily, I needed a bit of caring for too.  Nanny came shortly after our wake-up and while he and Lily quietly played, I snuck back into my bedroom for a few extra hours of sleep.
A while later, I was woken by an inconsolable, overtired sweetie. As I entered the living room, I found Thomas (the nanny) trying his best to calm her down.  When Lily saw me, she threw her arms up in the air and said, ‘mommy!’  I’m going to pause this story for a moment – the fact that this child threw her arms up in the air (in a clear demonstration of wanting to be picked up) and that she called out ‘mommy’, while looking at me pleadingly, is HUGE.  Again, I know this may seem insignificant to many, but it is far from insignificant.
So, yes.  My heart melted and I swooped up my sweetie and sang her our ‘song’, which used to be the song my mom sang to me when I was little – ‘Sunshine of my life’ by Stevie Wonder.  All was well again – for both of us.
And today, we are back into the swing of things.  She slept a solid stretch from Thursday night into Friday morning and had a great nap today.  AND – I’m glad to write that it is now 10.19pm and Lily is sleeping soundly.  Fingers crossed that this is another good night of sleep for the both of us!
Us girls know how to bounce back!

Us girls know how to bounce back!

And then a night like this happens…

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

Big things are happening!

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

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!

Playdate with our new friend!

Silly uncle Wagner!

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