Thursday, August 21, 2008

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 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.

Saturday, August 16, 2008

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

Wednesday, August 13, 2008

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 honor the other blog I read all the time....for Brooklyn....she is an amazing little girl with Rett my Kelly and her mom posts wonderful pictures of her doing amazing things....Here's a shout out to Brooklyn and her mom Kelly....go visit her at

Monday, August 11, 2008

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 the other kids when it was time to leave. she spent most of the time playing with a dog there. we'll get her one but not for a couple of more years I think. I want to make sure Kelly won't hurt a dog and the way she pulls hair, I think she'd hurt a dog at this point.

Next weekend....the 24th, we go back to the visiting Rett clinic in New Brunswick. Kelly will see Dr. Alan Percy, a well know expert in RTT. He was wonderful when we saw him in February. Can't wait to tell him Kelly's been pee peeing on the potty....yes that's right folks, after every bath I put her on the potty and more than half the time she pees......a few times #2......hurrah.....

The NJRSA New Jersey Rett Syndrome Association has raised enough money to have a Rett clinic open in Robert Wood Johnson hospital some time in October. It would be great to know I can go and see a RTT expert and know they'll be there in the future. there's a roll, walk, stroll fundraiser in October that I want to go to and help raise some money. I'll post more about that when I get more details.

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 medical hospital to see a specialist. Insurance says the stroller does not serve a medical need. Wow...I guess a permanent neurodevelopmental disorder that will leave Kelly dependent on me for the rest of her life, leave her non verbal and with limited physical and cognitive abilities puts Kelly just on this side of healthy...hurray for us. UGH.
Don't you love bureaucracy. Now we go for the formal appeal. I'm hitting up every specialist that I can to write a letter of medical necessity for the darn thing.

On a more brighter note, we went to my aunt's 80th birthday party this weekend and Kelly did great!!!!. she had a few nervous moments at the beginning...strange house, strange people. but she was the hit of the party after a while. She was walking and climbing into people's laps....totally surprised her cousin when she climbed into his lap. He's about 14 and the sweetest kid in the world. Technically, I think he is her third cousin...not sure how that works....his father is my what does that make our kids to each other???? anyone know....?

Sabrina on the other hand tried to steal my other cousin's...(my second cousin????, daughter to my cousin).....boyfriend. She's 22 and had her boyfriend from Manchester England at the party...boy Sabrina has good taste. He was very sweet in letting Sabrina follow him around for a good part of the day and he had an accent to die for....