Inspiration

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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

Lily’s a featured angel on the Int’l Rett Syndrome Foundation site

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She’s going to be 3 years old and has had 3 different diagnoses.  The last one (Rett Syndrome) combines the first two (autism and ESES, pre-epileptic activity) and adds a few more.  But regardless…. she’s still the best.  Ever.

We are heading to the hospital tomorrow and will be there for her birthday, but will celebrate it in style.  As always.

Check out her profile here:
https://www.rettsyndrome.org/news-and-media/irsf-features/featured-angel

And there is NO need for gifts or anything of the sort for her birthday.  If you feel so moved to do something, you can always make a donation (large or small) to the IRSF.  They’re amazing and have been so helpful for us these past two weeks.

https://www.rettsyndrome.org/make-a-difference/donate-now/donate

Love,
C and L

Newest Diagnosis for Lily

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And it’s the hardest one to digest yet.  We were at the hospital today to check in with the neurologist on how the steroids are working (I’ve not seen a marked difference, except in the size of her cheeks and tantrums) and I pushed the doc to give me the results from the genetic testing, which we weren’t scheduled to get for another 5 weeks.  Anyway, we got the results.  And Lily has Rett Syndrome (which falls under the autism spectrum, but is so much more than just autism).  Confirmed by the geneticist.  This is likely the cause of her ESES (rare form of epilepsy) and the reason for her regressions.  We will stick with the steroid treatment for the next few weeks but if we don’t see any major improvements, this medical avenue will end.
Please, please, please send us both strength and courage and virtual hugs as we both need them; me probably more than her!
Lily is still the sweetest, prettiest, kindest and bravest little almost 3 year old out there. And I’m still convinced that she’s going to live a kick-ass life.
To learn more about Rett Syndrome, here’s a relatively comprehensive, yet digestible, fact sheet on it:

Settling back into our routine

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It’s been a week since we left the hospital and we are both still excited and relieved to be home!!

Lily’s been doing great. The steroids have made her sleepy and she does have roid rage from time to time (which is scary to see – especially when it’s an almost 3 year old) but generally she’s been responding well to it all. So far I’ve noticed her nonverbal language improving (her hands go up when I say ‘up’ for example) and her motor skills are better too (she’s bending her knees when she walks!). But no marked difference in verbal language. Yet. Docs said to give it two to three weeks.

We have a follow up appointment on Thursday with the neurologist to check in.

I’m still not thrilled at administering the daily shot but I’m getting good at it. Lily is the best patient ever. She never cries when she gets it.

I still well up 😦

Sending love to all. And please keep the prayers and positive vibes coming our way.

C & L

(These were taken earlier today. Her cheeks have gotten pudgier but she wears it well!)Image

A week at the hospital

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Happy new year. We’ve been busy girls. At the hospital since Monday. Don’t know what day today is. But I think we can leave on Saturday. I really hope so.

We are making the most of it. I keep telling L we are on vacation – at the hospital!

Started the steroids a few says ago (to treat the ESES – a rare form of epilepsy she got diagnosed with the last time we were here). Today was my first time giving her an injection. She didn’t cry. But I sure did. My sweetie.

I’m hanging in there. One of my best friends from grad school was here with us the first two days and then the nanny came for a visit yesterday. John’s been popping in and out.  So I’ve been getting some breaks here and there. Today a friend is coming who I met at the ashram over New Years.

Exhausted. But L is doing great.

Please keep sending positive vibes this way.

C & L