15 January 2013

breathe.

kinda freaking out tonight. ruby's neurology appointment is in one week. talking with her physical therapist today, she cited the improvements ruby's made and also expressed her concern that someone with only a hypotonia (low muscle tone) diagnosis and nothing more would make progress quicker than ruby has, typically. so, that's worrisome. not that the PT is qualified to diagnose ruby but it makes me worried that she thinks there is something worse going on.

i've spent the evening consulting with the all-knowing (and often misleading) dr. google. most of the various kinds of dystrophy that i read about don't sound very much like ruby's symptoms. there was one that did talk about fatiguing quickly (which she does) and low tone. the very serious (read: aggressive and often fatal) types are almost always diagnosed in boys, so that makes me feel a little better.

basically, though, let's be honest. i have no idea what any of the information online means and ruby could have any one (or none) of those diagnoses.

the unknown is so damn terrifying. i'm supposed to have faith, i know.

she's so funny and has a huge personality. she is beautiful. her dark brown eyes are exactly like her dad's and go on forever. she tells me "love you, mama. bye-bye!" and kisses me before i leave her for the day. there just can't be something wrong with her that will take her away from me. that will shorten this beautiful life she's supposed to live.

i don't let the doubts out often, but tonight i'm giving myself a break. tomorrow i'll go back to being strong.

4 comments:

  1. Time for FAMILY LOVE! Can't wait to shower you guys with hugs and pepper that fire cracker of a kiddo with kisses. The girls are literally counting the days on their bedroom calendar.

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    1. SO ready for family time! it will do me good. ruby is so excited to see everyone, she's been naming everyone off for days. she says "Lucien" now and it's not adorable AT ALL. ;)

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  2. I say this with love. The WORST thing anyone can ever do when waiting a Dr. visit is to google. Until you have met with the Dr. do your brain a favor and just ride the wave of uncertainly and sit with it all. It will suck and be super hard but google never comes up with anything to ease the mind. I made far too many trips to the Dr. when I was pregnant because of something I read on google that might have applied and it turned out that it was normal. Just chill and say a prayer. :)

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    1. girl! did you just use my words on me?? "sit with it"? lol. I know you're right! I will do my best & keep you posted on how it all goes. say a prayer (or 30) for us. ;)

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