Stronger

The past few months have been extremely stressful so writing posts has not been a top priority.  However, I didn’t want to leave you hanging for too long.  I’m proud to say that Lily has been showing improvement in many areas.  Her appetite has come back (for the most part), her peeing has normalized (for the most part) and her gross motor function/walking has also returned (for the most part).  Her breathing is still an issue though that too seems to have gotten better.

I have been obsessed – OBSESSED – with her caloric intake.  And I’m pleased to say that a steady diet of pizza, cheeseburgers, hot dogs, rice pudding and vanilla yogurt coupled with her morning smoothies (which has a pediasure base and some raw veggies that I slip in) has helped her fill out and get stronger.  She still has more weight to gain but many days I’m finding myself not completely stressed and uptight about her eating.  It’s helped that most days she’s opening her mouth for food and is genuinely interested in eating again, though her former diet of uber-healthy food has screeched to a halt.  Whatever.  The kid is eating.

But I can’t completely relax.  We still have days that are difficult for her.  Really difficult.  Heart-breakingly difficult.  And I’m trying to shake the hangover of what she went through these past few months but I can’t completely.  Rett Sydrome is always lurking around and we just never know when it will pounce.  I can’t make this the focus of my attention as it will destroy me.

So I remain in hope.  And there’s good reason.  Last month two significant announcements were made about Rett research.  One was regarding a research trial on a drug that ameliorates a handful of painful symptoms in our girls.  And the other was regarding the path toward a cure using gene therapy.  Awareness-raising and fundraising are now more important than ever.

Until the cure comes, us warriors will continue to battle against the day to day struggles of Rett Syndrome, and we’re going to do our best to have as much fun along the way.

Love,

C and L

 

Spring Break 2017

Spring Break 2017 in South Florida with Grandma and her cousins!

Feeling loved

I know it’s been a while dear reader. But Lily and I have been busy ladies! Starting a new school, finding a new home have been huge endeavors.

This past weekend we moved our lives from Brooklyn back to Manhattan. We will miss Brooklyn terribly. But our lives will be so much easier. We are now eight short blocks away from Lily’s new school and 30 blocks away from the office. No longer do we have hour long (or longer) commutes. We also don’t have a third bedroom, but there’s always a compromise!

No less than 12 people physically, and at least half a dozen virtually helped us girls move our home this past weekend. And many brought, or sent flowers to make our pretty new home even prettier. Thank you is an understatement!!

We are the luckiest, most loved girls in Manhattan.

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Scenes from a move

Inspiration

The below poem was written by a young woman named Gaby Valner who has Rett Syndrome.  She also has a blog and has been published in the huffingtonpost.com.
A Mind Comes to Light
From the foggy deep,
A mind chained and bound
Finds the light, a flickering dim glow.
To add to the infant flame
the mind uses kindling –
Knowledge, books;
soon, a fluorescent glow burns bright.
From the foggy deep,
A mind emerges.
I’m filled with such hope, reading about this young woman’s life, her struggles, her joy.  And it makes it feel that much more of an imperative to find the ‘perfect’ preschool for Lily.
I’ve toured one school so far – and have been blown away by it (not just because of their indoor sensory gym and location!).  There are a few more tours coming up these next weeks… So many places are already full for September.  Here’s a link to the school which is on the top of my list (for those interested!):
Fingers crossed that we are back in Manhattan in the fall!
We have another busy week ahead of us.  Lily’s 3 year check up with the pediatrician is on Tuesday, the follow-up with her neurologist is on Thursday and the much-anticipated visit to the Rett Clinic is on Friday (which is likely to be a 3+ hour appointment).
This kid knows how to keep her momma busy.
The progress that Lily has been making lately is awesome.  She’s so much stronger on her legs – she’s been running down the hall, pounding those little feet on the floor, while giggling.  She’s dancing (even doing assisted spins!) and she’s so much more interested in her surroundings (you should have seen her face yesterday when we were driving home from New Jersey – she was mesmerized by all the lights, and especially the Holland Tunnel).
However, her ability to meaningfully use her hands is not going as great.  It’s getting harder and harder for her to hold her bottle.  But you should see her throw a ball, or spike a balloon.  The pride she has on her face when we’re playing together is priceless.  (I’m sure the pride on my face is priceless too!)
Here are a few photos of us from the past two days.  Desiree (the nanny) and Hamida (the speech therapist) both called me out for dressing us in the same outfits.  This was truly unintentional.  But I am my father’s daughter after all.
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Sending love,

C and L