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 cousin...so 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....

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 baby I love you... .its pretty spooky.

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 car accident he and Sabrina had a year and a half ago. I know he'll be fine but I'm so nervous until I hear his voice and the dr's tell me he's OK...I'll be jittery all day.
I dropped him off at the hospital at 9:40am and surgery was scheduled for 11:45am.
I know he went into surgery but each time I call the hospital...all they can tell me is he's not down in same day surgery suite yet which is normal...he has to have surgery, then recovery, then back to the surgery suite....but I'm nervous all the same.
You should have seen the way I jumped when the phone rang before. It was Joey. He's going to pick Lief up and bring him home which is good so the girls did not have to stay at the hospital all day. but Kelly did have to miss school. I didn't have anyone to take her and drop her off at 9:20AM when I had to be at the hospital an hour away at 9:45AM...I'll let you know how things so...keep a good thought.

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 with her pillows,....she really likes it.

she also returns to school tomorrow. We met her teacher today and one of the classroom aides. They were very nice. Each semester her therapy team seems to change too. Now she has a new PT, new OT and new speech therapist....but she loves school no matter what. She had a blast just for the few minutes we were there. Sabrina loves to visit her school too and play with the other classmates and the toys.

View of bed with gates open....

The bed has a triangle pillow under the mattress for Kelly's reflux.

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.