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

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 Syndrome...like 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
brooklyn

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.

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 wanting to see....

http://www.youtube.com/watch?v=-2VRAHRbmT8

OK...can someone explain why I like this?????

Tink....

HEY>>>>it's my first glitter graphics...now hopefully my blog will be a little more interesting...Tinkerbel is my favorite character in honor of Kelly, my little pixie who won't grow up...or should I say doesn't grow up....I wonder if she would if she could or does she know something we don't. They say special needs children are actually angels sent from heaven to help others on earth...maybe she knows a lot more than we think...problem is she's not talking...or maybe she just doesn't want to....????

Life is Good

OK...so life is not perfect as a matter of fact at times it really sucks but for today...for this moment life is good. Lief is on vacation this week and next. Kelly is out of school until July 8th and then she starts extended school year, six weeks over the summer so she does not lose the skills she is starting to show.
Sabrina is out of school until Sept. but will have some half day classes at the local school to keep her occupied. I'm planning our trip down the shore starting Thursday, LBI here we come. Money is tight...gas prices are starting to affect us,..Lief's job is stressful...but life is good. I'm content...my daughters are beautiful and smart. I keep thinking that if Kelly has the same intelligence that her sister Sabrina shows and the the developmental delays are affecting her but she can understand so much now...or at least I think she understands....I wonder how really smart she would have been without Rett syndrome.
I love my husband...he's wonderful...I really like living in our new town...well it'll be four years this August...time flies...we moved here when the girls were six months old. They are four years, four months and three weeks old today.
Life is good...

Wish I could post their beautiful faces...

OK....so this was the beautiful birthday cake I made...it was suppose to be a castle with draw bridges but Sabrina saw this carousel and wanted it instead....except the cake pans I had were too small in diameter and definitely did not fit the size of the carousel....oh well....

Want another....

Kelly going down the slide....sorry it took so long to post...this was Easter...

One more time....

Beautiful cows from Hershey PA.. and Chocolate World

pictures...if I can...

Kelly gazing off and thinking....Mom....that's not my face....I'm over here now....

Shame on me....

I haven't blogged in three months....shame shame on me...sorry for any one who really cares...
I would blog more often if I could post pictures of my beautiful girls but I promised Lief I wouldn't. It would definitely be more interesting if I could...I will post an occassional back or side view...he can't get too mad at that.

Kelly was seen by a new Pediatric Neurodevelopmental Dr....and whereas there was nothing new to add....she did suggest Kelly see a Pediatric Physiatry...a doctor of physical therapy I guess. That doctor can suggest adaptive equipment, chairs etc that Kelly might benefit from. I've only had her get PT through early intervention since she's been 9 months old and now through school. I never knew there was a medical doctor in that field and now one ever suggested I go. I think will continue to see the new neurodevelopmental dr too since she made the suggestion. Kelly sees so many doctors but I will change if I don't get that "warm fuzzy" feeling that Kelly really matters to the dr or if the dr isn't very proactive. The last neuro was too laid back...after we got the Rett diagnosis she sent me printouts from the internet that I had alreay read, nothing very positive so we moved on.

School is out at least for a while. Sabrina will have a few summer classes at the local school for arts and crafts and they have a playground for outside playing with her friends. and she starts swim lesson Saturday. Kelly is off of school for three weeks. We're going to Long Beach Island for three days next week...can't wait. She'll have summer school from July 8th through Aug. 15th and then off for another three weeks until next semester starts Sept. 4th ???? She's also having a few swim lessons from on OT in July.

almost forgot...kelly did #2 on the potty three times last week and #1 once.....woooo hooo.....
We're waiting for approval on a wheelchair/ stroller for Kelly. Hopefully it'll be approved soon.

Well, gotta go...blog ya' later.....

Time flies

Wow its almost a month since my last blog...wait it is exactly a month. shame on me.
Not a lot to report. The girls loved going on easter egg hunts this weekend. and Kelly climbed up and slide down the ladder at our little community park. Daddy was so proud. She kept going and going like a little energizer bunny.

Next weekend I'm going to meet a whole bunch of families living in Rettland. Thats where we all live now that one of our angels has Rett Syndrome. There is a retreat at a NJ hotel and we can stay over or not and meet and greet and try to relax. Well at least I'll meet and greet. Relaxing will be for the following weekend when myself and a few girls are going to Hershey PA for the night and soak up a little chocolate relaxation.

Wow, this is really sounding boring and I need to get to sleep before Kelly decides she doesn't want to. I'll try to write again when things are a bit more interesting.

Hi again

Sorry no postings in a while except that I have a potential staph infection on my right forearm...going to the doctor every other day for a week now. No need for details...its pretty gross anyways. so the arm thing has me not doing too much. I have to float my arm over the computer to type as I can't rest the arm down so I haven't been on the computer much.

Kelly, my Rett angel is doing awesome...saying Mama everywhere and she did the sign for horse at school two times...asking for Yankee Doodle dandy song. yeah....
Sabrina is being an angel too. Behaving for the most part....

they both loved playing in the snow too.
Post again soon.

"Ma ma" sweetest words in the world

Kelly is saying "ma ma" again. It's been about 2 1/2 years since she said it. thanks for all those prayers. Keep 'em coming.

She is in her crib now, laughing and what I have to call growling. she just started that new sound last night. OH BOY. she was up at 1:30am yesterday from a dirty diaper and would not go back to sleep. Hopefully she sleeps tonight.

Sabrina has been an angel too. She has been so good, playing with the neighborhood kids, sharing better. Doing great with trying to write her letters. Can count to 15, knows her colors and shapes. Can spell her first and last name and knows the name of the town we live in. I'm going to start on the street address next. Little Miss Trump....wonder what she'll grow up to be....any thoughts...She loves princesses, Barbie, fairies, dressing up in dresses. She always wants to be first. Loves to paint, loves books. She loves Buzz Lightyear. Loves to run. Loves to have her picture taken. Loves her mommy, daddy and little sister...All in all a great kid.

Armbraces and Birthday Cakes

I'm about to order armbraces for Kelly, restraints to keep her hands out of her mouth. I've been thinking about it for weeks but waiting to talk with her OT before commiting. Kelly is always biting her right forearm and already had one staph infection on her finger from keeping it in her mouth. It almost feels like I'm giving in but I know that many of the girls with Rett Syndrome experience a calming effect from the braces.

The other thing on my mind is birthday cakes. I wanted to get a cake for the girls 4th birthday but it would be over $50.00 to have a half a sheet cake made with decorations of princesses and blues clues...so...I'm making it myself. I figure I make one sheet cake the bottom. Make a second sheet cake and cut down one third of it...so I can have a base, a second level and small third level...then try to decorate it like a castle. need to check party stores and dollar stores for items that are castle like..Sabrina has a few knights in shining armor and princess the right size but she plays with them all the time. I don't want something on the cake Kelly may have bitten. I thought I'd make the bottom layer, blue like a moat top two layers to look like a castler with a draw bridge??? and turrets. of course they'll be princesses for Sabrina and a blues clues dog for Kelly. Of course I'll have to do all this after the girls go to bed the night before the party. ...as well as make cupcakes for the kids party that afternoon....lot of baking ahead.

Let's get Rett Syndrome on Oprah

I've been trying to get the attention of the producers of the Oprah Winfrey show to do a segment on Rett Syndrome. If everyone reading this emails them with the request and asks a friend to do the same, maybe we can get some national attention. Just trying to jump on the coat tails of the American Idol contestant who was featured last week during try outs. Angela Martin from Chicago has made it through to Hollywood. Her daughter has Rett Syndrome as does mine. For more details about the syndrome please check out www.rettsyndrome.org or www.rsrf.org.

The website for the show request is www2.oprah.com/email

Healthy little sick kid..

Next week the whole family seems to have doctor appointments, not just Kelly for a change. Daddy goes to the surgeon to check on his shoulder...we think it's healing nicely. He had a torn Labrum? Sabrina and Kelly go for their four year check up. Mommy goes for her mammogram. I think my family alone is keeping the medical community rich. Kelly also goes for an EEG at CHOP on Thursday. She always seems to get the same review. She's doing well see you again in 3 months, 4 months, 6 months or a year...depending on the specialist.

The I have to schedule dentist appointments for all of us. Haven't found a good one that I like that takes our insurance yet.

I bought a pair of ballet slippers and a pair of tap shoes for Sabrina today. She's starts dance class on the 29th. Its not very formal. 15 minutes of tap, 15 minutes of ballet and 1/2 hr in the gym doing balance bar, uneven bars etc. She had an intro class this week and did not stop smiling from ear to ear the whole time. When I took her to preschool the next day, we pulled into the school which she also loves but said "I want to go to ballet!" Daddy was hoping for a female Tiger Woods but I think we may have a female Barishnikov.

Hey I gotta date...

Lief wanted some romance in our lives...read time to ourselves....so I got a baby sitter and we're going to brunch.
OK so its not much but its a start. I even put on perfume...woo hoo.
He's having his shoulder operated on tomorrow so he'll be laid up for a while. Arm in a sling for 10 days.
No lifting Kelly....bummer...at least his arm will stop hurting or at least it should....

Reflux better????

Well, thanks to a wonderful thing called Rett Net I was in touched with many people who have Rett angels in their lives.
I spoke over two hours with a wonderful woman named Dawn who also has twins, one with Rett's.
She mentioned that she took her daughter off of wheat and milk and that she's stopped spitting up. Well I thought, let me try something, so today Kelly had no wheat......and today Kelly did NOT spit up at all!!!!!!!!!!!!!!!!!!!!!!!
Now watch,,,,I just jinked it but slow and steady. Now the thing is to come up with lunches for school that don't have wheat.
Kelly usually eats Gerber Graduate lunches or Campbell's soup or chicken nuggets or jelly sandwiches....all have wheat.
Today I gave her tuna with mayo no bread and pears....Any suggestions for easy portable lunches would be GREATLY appreciated. Can't give her tuna every day....probably some baked chicken...??? I'm not coming up with much else. She's not into cold cuts which is probably a good thing.

Sabrina helped me put away the christmas decorations....she loves to help...Now we are going to play with the Polly Pockets Sue gave her for Christmas...way to go Sue...she's been playing with them all day.