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so you think you can dance....mentions Rett Syndrome
A choreographer couple has a daughter with Rett Syndrome and dedicated their dance to their daughter...one of the couples on so you think you can dance did a beautiful job....link below for anyone...
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Kelly's adapted bunk bed
I will try to post pictures of Kelly's bunk bed with the customer railing we had made. I'd be glad to forward pictures directly to any one interested just give me your email.
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View of bed with gates open....
The bed has a triangle pillow under the mattress for Kelly's reflux.
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Kelly slept 12 hours
So Kelly was so exhausted being in her new bed and up at 2:30 am on Sunday morning, that she slept 12 hours last night.. woo hoo....She is so cute sitting in her bed in the morning, smiling and playing...
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a nervous day
I am trying to fill my day with mundane routine things...I can't work on anything really important because I can't concentrate...Lief is at the hospital for a second surgery on his shoulder from the...
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He's fine....I think
Lief called and is OK but boy it did not sound like him at all. I know that the anesthesia is probably messing with his throat but when you hear an entirely different male voice on the phone saying Hey...
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What's new with us????
I've been very busy lately trying to fight my insurance company and having them approval a "stroller" for Kelly. She can walk but won't willingly go where I want her to go, like the fifth floor of a...
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What's new in Rettland?
We attended a Rett picnic two weekends ago. Local families dealing with Rett Syndrome. There was about a dozen families. a pool and a trampoline. Sabrina had a good time but just started to warm up to...
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My first award since High School...
Thanks Sue....she's honored my blog with an award....of course..she's about the only one out there reading it....but occassionally I get other visitors....kind of like at my house...I will in turn...
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Worth repeating....
I don't know if I posted this video on my blog before but I feel it bears repeating.Alison Krauss does a song called "when you say nothing at all" and its beautiful and reminds me of Kelly and all the...
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What I did today....
We went shopping, Sabrina, Kelly and I. and Kelly did NOT have a big transitioning problem every time she went into a store. She would cry for about 30 seconds and then get over it. I was able to buy...
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Back to preschool and back to the craziness.....
Hi everyone....the girls are back in school. Kelly started last Wednesday and Sabrina started today. Kelly is full time, five days a week. Sabrina has three full days a week, Monday, Wed, Fri....with...
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My survey
Clothing store; Kohl's and Dress barnFurniture store: Raymour and FlaniganSweet: chocolate cakeCity: San Francisco....love it thereDrink: Amaretto and orange juice if going out.....diet cherry pepsi if...
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Kelly and I go to the NJ State Assembly
The third tuesday in October is Rett Syndrome Awareness day in NJ....it was last Tuesday Oct.21st this year. On Monday Oct 27th, the girls in NJ with Rett Syndrome are invited to attend the NJ State...
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Halloween Gingerbread House
Just wanted to quickly post his picture of the gingerbread house Sabrina and I made for Halloween.And a quick shout out to Laurie!!!! Hi Laurie or is it Lori? sorry if I spelled it wrong.
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The current low down here...
Sorry I haven't posted in so long. Not too many people read this so I'm usually talking to them on the phone any way....right Sue?We had a great trip to the State House for Rett Awareness. Kelly stole...
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Happy New Year
sorry it too so loooooooong for a new post. I have lots to say and not much time to say it....so I'll be updating every now and again...probably lots of disconnected thoughts but the main reason we...
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Hello, hello, hello
So....now I've finally gotten on Lief's computer and loaded the pictures from my camera. I'm attempted to follow up on Sue's tag of what my refrigerator looks like. Hopefully the picture will do it...
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Another refrigerator picture
So the right side of my refrigerator has the obligatory magnet letters that almost every family of a small child is required to have. we also have the leapster toy that pronounces the letters so...
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Kelly rocking out on her new piano
I know it looks like Kelly is really playing the piano but she is just banging away at the keys....either way its music to my ears.
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One final post...for now...
Here is a picture of the new painting we purchased from the "starving artist" show. I guess it is the artist's interpretation of another painting I've seen and wanted to get but this was a little...
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Girl Power
Get the Girl Power 2 Cure widget and many other great free widgets at Widgetbox!Hi everyone,Here is a widget that links to a website started by a Rett mom to help raise awareness and fund raise for...
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The Interview
Sue's blog, (at Keep in Touch) my bff, has an interview of her from a fellow blogger and asks for volunteers to be interviewed....I have bravely done so and ask any one else who would like to be...
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the thankful list
My list of things to be thankful for:1. My husband...he gave me back my dreams when I didn't think I could dream for much.2. My kids...for making my dreams a reality. I really love this mom gig....
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