Sunday, October 3, 2010

no. 3: a good weekend

dear little leah,

we just got home from an amazing weekend filled with amazing rett families - pretty appropriate for rett syndrome awareness month, huh?

on saturday, daddy and i drove you to oakland to participate in our second rett study. we met with dr. glaze and his wonderful nurse, judy, again. you really like them. we also met with dr. motil and you got me in trouble. you're too darn skinny. i know i tell you it's cute, but if you get much skinnier they might have to put a feeding tube in you. and i promise you real food tastes better. so when i fill your plate full of butter and cheese for the next six months, eat up, okay? we met with dr. killian and he took a look at your bone structure. you're good to go there. although, i learned i have hyperlaxity and 99.9% of people with hyperlaxity can't run more than a mile or two at a time usually. i've beat the odds, apparently? i'll definitely be looking into that...

after daddy had to leave, you and i had a great time at the hotel {see picture above}. your new friend claire even let you use her eye-gaze computer and you started to catch on. it was awesome! you kept saying you didn't feel good. i kept saying i didn't believe you because you were so giggly. then you pooped 3 times. now i believe you. sorry about that.

you loved breakfast this morning. all 10 slices of watermelon and more. and luckily, they didn't throw my invisalign away after i left it on my plate. whoops! flashbacks of third grade...

and the strollathon was great! we met so many fun new friends and you even found yourself a new fan club. some of our good friends came to support you and walk with us and it was so wonderful...especially our matching team leah bean shirts. love them.

i was reminded this weekend how lucky i am to have you. in the world of rett syndrome, we're pretty lucky and it's good to be reminded of that. you are one happy, giggly, beautiful, sweet little girl and i had a great weekend spending time with just you.

love, love, love you. love,


  1. glad you had a good weekend... yay team leah bean.. you have a fan club in arizona too!

  2. LOVE this picture of you two BEAUTIFUL girls and your smiles!

  3. I hope the strollathon went well! Sad we missed it. Go team Leah bean!