28 February 2013

the best thing i've heard in weeks...

we had our first appointment with dr. schroth at the american family children's hospital in madison today. just like everyone told us we would, we LOVED her & everyone we met on ruby's new team.

i am going to keep this short and so fabulously sweet. she told us that ruby's actual diagnosis is type 3 (not 2, as we had previously been told) and she will have a normal life expectancy. she will have challenges. but T & i should start saving for college.

can i get a collective "heck yes!" & a virtual high five?!

now. let's all go eat sushi. :)

14 comments:

  1. Hurray! Hurray! Hurray!!!
    Love,
    Mom
    That said, I have the first quilt for the foundation almost done : )

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    1. that is awesome, mom. I keep the little note that was written by the grandma of another little girl with sma and pinned to the blanket ruby got on the wall in her room. an act of kindness from a stranger is another reminder that we all belong to each other.

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  2. Now that IS a good refrain. Great news!

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  3. That's great, D. How did she discriminate between the two? My extremely uneducated assumption was that she was type 2 just based on age. So excited for you guys. Candi and I are praying together and individually for you all. Love ya! Sweet pic, too.

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    1. hey brother! the types are clinical distinctions, basically. type 1 is generally those kids that can never sit up on their own. type 2 can generally sit up but never walk. type 3s walk but develop weakness at some point. because ruby was taking independent steps at one point, she is actually a type 3. plus, she is strong from a respiratory stand point, which is extremely important. SMA kids can be diagnosed anywhere on the spectrum of weakness/strength. no two people are the same. even if their genetic make-up (in terms of the SMN1/2 gene) looks the same, there are still other (unknown) genetic factors that can cause two type 2 diagnosed people to have completely different symptoms and prognosis. does that make more sense?

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    2. it is so good to hear because we were praying that she wouldn't deal with breathing issue.

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    3. yes. us too. dr schroth said that if ruby has respiratory problems, she doesn't anticipate her having them until her 40s or 50s. so that's very good news.

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  4. I'm so so overwhelmingly overjoyed for you guys! Here's to many many more good times with Rubinski shared vicariously through in internet!

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    1. that sounds absolutely perfect, Erin. :)

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  5. Heck yes! Virtual high 5! Virtual hip bump! World-Wide Happy Dance! Get down with your bad selves. :-D

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