Monday, October 4, 2010

no. 4: you breath holder, you

dear little leah, 

you are a champion breath holder. really, truly awesome at it. i'd consider giving you a prize for this honor if it didn't scare the living daylights out of me. luckily, you've never turned blue or passed out {and i know other rett girls do, so i'm counting my blessings and crossing my fingers and toes...}, but you're still pretty good at it. 

it really comes out of nowhere and lasts for various amounts of time. after you finish, you usually get a little wobbly and then go back to doing whatever it is you were doing before your body decided to shut off the oxygen to your brain. 

i've calmed down a lot during these episodes. i used to get really freaked out. now, i just do my best to give you a hug and let you know i'm there to help you and hold you until the breathing returns. 

i really worry you'll do this in your sleep one day and just never wake up, but i'm assured your breathing while sleeping is normal. ugh. going on faith for that one...

but then today...toDAY...i saw the greatest, bestest, most wonderfullest article, leah. it talked about some researchers who figured out why you lovely little ladies hold your breath and hopefully how to stop it. they've done it in mice AND they've done it with medication that has already been approved and is being used to treat other illnesses. so hopefully we can help you really soon! wouldn't that be great? i know you don't like to hold your breath. i know it's not your choice. and it's probably scarier for you than it is for me. 

so, here's to being one step closer, my friend. 

love you bunches. 

p.s. the videos i'm trying to upload of you holding your breath are failing right now. i'll keep trying...

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1 comment:

  1. Very exciting to hear about these little advances in Rett Syndrome research!