Wednesday, September 26, 2012

Mt Sinai



Last Tuesday, Brett and I took Quinn to see the doctor who specializes in Niemann-Pick Disease.  And by "the doctor" I don't mean the one in New York or even the one in the US.  I mean THE.ONE.  As in - in the world.

Dr. Wasserstein runs the International Center for Niemann-Pick, Types A & B at Mount Sinai in the city.  Our new NPD friends all told us how lucky we were to live so closely to Dr. Wasserstein (I work in the city, so we are commuting distance) and what a phenomenal resource she was for all of them.  I had images of this super strong demigod(dess) swirling around in my head as the appointment approached.

We were met by a very soft-spoken woman.  Ok, I can re-jig my original idea to a kind, super-strong demi-god(dess).  Then she saw where we lived and asked if we were originally from there.  I am from the town over and it turns out, Dr. Wasserstein went to a rival high school in that same town.  Hmm.  I knew some pretty smart people growing up, but what I need is THE smartest.  My confidence began faltering.

Then she asked if White Castle was still nearby.  Well, yes.  Dr. Wasserstein confided that she would cut out of the neighboring temple during services and go to White Castle with her friends growing up.

Crap.

My images now shattered, I began picturing the people I hung out with growing up.  And - god love them - that's not who I had in mind.

But then I saw it.  I saw her brilliance in her thoughtful questions and her even more thoughtful answers. The way she caught her breath and said "oh! That's my Kaitlyn" when we showed her a picture of a beautiful child recently lost to NPA whose resemblance to Quinn is uncanny.  And most importantly the way she quietly, defiantly answered Brett's question about whether she had any personal experience with NPD - "they're all personal."

We had found our match for beautiful Quinn.  

(speaking of, it has just occurred to me that some of you who are reading this have never seen our amazing little girl.  So, some gratuitous shots below - just because :)

Dr. Wasserstein patiently answered our questions.  She spoke frankly, but gently - always gently.  We are in no way disillusioned with what we'll be facing so sugarcoating it does no one any good.  But kindness and gentleness are oh, so helpful.

The main concern at this time is keeping Miss Quinn's weight up.  Her liver and spleen are already pretty enlarged and are stealing so many of the calories going into her already small frame (20% for weight, 25% for height).  Quinn begins feeding therapy tomorrow and we're working on PT now.

We go back to Dr. Wasserstein next month.  I'm thinking of bringing her some sliders.


at her first Mets game this past weekend 


during her 'power hour' - the time after eating when she needs to be held upright and steady 

a photo entry for a Win a Trip to Disney contest

6 comments:

  1. So glad you had a wonderful trip to Mt. Sinai!

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  2. Dr. Wasserstein is a tremendous resources and as you mentioned, so very kind. I'm so glad you were able to connect with her. By the way, Quinn is a doll!!

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  3. she is so beautiful, I love all of her pictures! I only talked to Dr. Wasserstein one time on the phone, but it was life changing and empowering, she is very special, I am so glad she got to meet Quinn. much love, Chelsea

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  4. So glad you got to see Dr. Wasserstein - she sounds amazing. Quinn is so beautiful! It's easy to see from these pictures just how special she is! :)

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  5. You are in great hands with Dr. Wasserstein and so fortunate to be nearby. I hope that proximity provides comfort for you guys as you deal with everything. Love on that little girl because the memories are what you will hold on to, not the struggles!

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  6. I stumbled onto Kaitlyn's blog what seems like a long time ago. I don't recall how exactly, but I'm near Charlotte and so is her family. From there I began reading Our Sonny Life and I adore and am always touched by Chelsea's writing. She inspires me. Today she shared your story, Quinn's story on her blog and I'm honored to be able to read your story. I've added your blog to my Google Reader. You will be in my thoughts and close to my heart. Kaitlyn and Trek and their families and their journeys have left me broken hearted, but more than that, they have inspired and brought light where there isn't any. Quinn will make her mark.

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