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 the hearts of the assembly people. We walked in and stood on the right side of the assembly room, right in from of a wide set of steps to the different assembly peoples desk. One assemblyman was trying to pick Kelly up, she just smiled and stood near him. Another assembly person put Kelly in her swivel chair for a spin. This was all while the people we were with were giving speeches. Not very polite of us, but Kelly put a smile on quite of few faces. She was the most energetic and mobile girl there. I'll try to post a group shot of the trip.

Sabrina is getting ready for Santa. We wrote our list today, of course, it was a little different than Santa had first thought. Thank goodness her birthday is in February so things that might have not been on her list will be given then.

Did I mention Kelly finally got her Convaid EZ transit stroller in a raspberry color. We took it for a spin to Wendy's the other day. She did great. I still won't send her on the bus to school because since she's non verbal I would hate for something to happen and I never find out about it. Sabrina will take the bus to school and if there's a problem, I'm sure I'll find out somehow.

Happy Early Thanksgiving everyone. I'll be cooking a turkey tomorrow to give to a woman's shelter. I'm really going to hate cooking a turkey and not having any leftovers. Its torture but I'll survive. We're going to a friends for Thanksgiving dinner.
Enough for now. I'm going to look for that picture to post. Someone emailed it to meet but I have to down load then upload....not one of my better abilities. Wish me luck.

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.

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 Assembly for a proclamation of support of Rett Syndrome girls. Kelly and I will be there. I think it's time I start reaching out to my representatives in requesting help for Kelly and my family. If anyone in NJ would like to also attend, all are welcome. At 12:30 at the General Assembly room...don't be late as we're only allowed one minute of talk time before they give the proclamation and move on with business.
WOO HOO for us.

My survey

Clothing store; Kohl's and Dress barn
Furniture store: Raymour and Flanigan
Sweet: chocolate cake
City: San Francisco....love it there
Drink: Amaretto and orange juice if going out.....diet cherry pepsi if home
Music: lately Country...just found a new station on Satellite radio
TV Series: Hell's Kitchen, Project Runway, the Rachel Zoe project, Ace of Cakes, America's Next Top Model......
Film: the Way We Were
Workout: Chasing Kelly around outside
Pastries: Cherry pie
Coffee: yes please.... skim milk and one equal

How about: Favorite food : almost anything Italian
Favorite season: Fall
Favorite place to go by yourself: Barnes and Noble
Favorite gemstone: all of them
Favorite childrens' story: The Nutcracker
Color: Yellow
Animal: beagle
Vegetable: Asparagus
Celebrity: Audrey Hepburn

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 dance class on Tues and library class on Thur....does that about cover it? Oh yeah, there are all the dr appointments for Kelly to squeeze in. she has nine different doctors, not counting her Pediatrician and the visiting Rett specialist twice a year and that's not including the regular appointments like the dentist. Then there's my dermatologist, my physical, Lief's physical therapy three times a week. My GYN...........uh oh......boom.....
my head just exploded......gotta go.....time for snacks and then I get to make dinner....wait...good news....Lief is taking pity on me and he's making BLT's tonight....yeah......
oh by the way...I know you're all going through the same thing....care to list your crazy schedules??? be my guest :)

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 Sabrina a Halloween costume. I know its early but it was technically free. I use Disney points from my credit card. She'll be Aurora this year. for those of you not up on your princesses. That's Briar Rose or Sleeping Beauty...or S.B. aka Sabrina Breden.
I also bought three outfits for Kelly from the Osk Kosh B'gosh outlet. Two long shirts that i'll put leggings under and a shirt and capri pants....so cute. They were 60% off. Not too bad huh.

and the big news,...Kelly is picking up the stylis and scribbling on the magna doodle I have at home. In her school progress report it said she really liked playing with the Magna doodle. and she really does.....WOO HOO.

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 Rett angels.
click onto the name below to get to a website to hear her music.

alison Krauss