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. Sabrina for challenging me to be a better mom, to be able to juggle car pool, housework, paperwork and remember that its most important to play. Kelly, for the unending smiles, and total love and optimism in her eyes. I want to be a better person for her.
3. My home...love my house...hope we can afford to stay here.
4. My friends and family....you guys are the best....especially when you let me drone on and on about #1 and #2.
5. Dogs.....love them and their unwaivering devotion. I still miss Epi.
6. Flowers....the best thing about nature. Love their color, most of the time their fragrance and the way they can brighten up a room.
7. My car....I think I'd go nuts if I couldn't get out of the house.
8. Music...I love the way it can take me away or take me back at any moment in time.
9. Being an American...despite the problems we face every day I don't think I'd rather live in any other country.
10. For my faith in God..at times waivering and at times strong...thankful for it being there when I need it...(ok...this should be higher than dogs.)
11. For reality TV...it can get me through a bad day to watch like a zombie at night.
12. For my kids pediatrician...he's been wonderful and supportive and calming....
13. For teachers and therapists that really care. They have really been a Godsend. in my life.
14. For Kathy Hunter, IRSF, NJRSA and all those fighting for a cure for Rett Syndrome, especially Dr. Percy, Jane Lane, and Dr. Shishadri..who personally take care of Kelly.
15. For double chocolate chip cookies...nuff said.
16. For coffee.
17. For computers.
18. For my somewhat slipping but always needing to be depended on, intelligence.
19. For the occassional ability to just let things slide....I need more of this in my life.
20. For my health and the health of my family (this should also be up higher on the list.....ok....this is a go with the flow type of thing....not in the proper order of priorities at all.)
21. For Santa Claus...gotta love the Christmas holidays... and those times that I really get in the spirit.

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 interviewed to let me know. You have to answer five questions on your blog and then ask your volunteer five questions....and so on so it continues.
Question #1 What is your favorite childhood memory?

This took a little thinking as I don't really have a lot of childhood memories and unfortunately not too many stand out as favorable....that said....I do fondly remember summer vacations down at Ocean Beach NJ....by Lavalette. My family would rent a beach house, sometimes on the lagoon. My mother's cousins would usually be down too. There might be upwards of ten kids...that's alot to me...we'd go to the board walk and ride the rides at Seaside Park. I remember playing arcade games with my Grandmother, she loved playing the poker games where you rolled the rubber ball to make a poker hand...and yes....gotta love skee ball.

Question #2. What family traditions do you have with your children, and where did they start?

Of course there is the annual cookies and milk left for Santa at Christmas, looking for Easter eggs at Easter and getting whatever you want to eat on your birthday. Nothing too ground shaking. My parents did not instill any particular ethnic traditions with us...I'm Irish and German...Lief is Irish German and Swedish.
I do try to make Corned Beef on Saint Pat's day but I can't make Irish soda bread.
We are trying to make a regular game night to play with the girls during the week.
So far every night is game night but I know that won't continue when the girls are older and have more of their own interests.

Question #3. What is your most romantic memory?

I thought maybe it would be our first anniversary. I planned a night of firsts...we went for drinks where we had our first date, we had dinner at the restaurant where we had our first Valentines and then stayed overnight at the hotel where we spent our wedding night...all the while being driven around in a limosine....pretty romantic right....but the MOST romantic memory for me was Lief and my first kiss.
We were on a blind date (actually I made sure I saw his picture first). We met at Charlie Browns for drinks...we talked for hours at the bar...almost forgot to eat dinner...when we left...he gave me the sweetest, most gentle kiss in the parking lot.
Still love the memory of that kiss.

Question #4. What makes you happiest, right now? Seeing my girls accomplish things, being successful in their own right. I guess its more being proud of my girls but when I see Sabrina dancing at a recital or taking a swimming lesson and she can do things better and better, I can't help but smile. When Kelly reaches for the Dora doll in the bathtub because I asked her for it, I cheer. Her genuine unaffected smile is the most wonderful thing in the world and makes my heart soar.

Question #5 Imagine yourself in the future, looking back over your life. What do you hope you will be able to say about your life that will make you feel like you've succeeded?
I would feel successful if I raise loving, empathetic daughters who truly care about each other and the world. I do not feel I was ever taught empathy and I'm not sure how to teach my girls. I feel that without it the world will never be a better place. Also, I would feel successful knowing I have made real true friends. I have a few that I can truely count on and I hope they know they can count on me.

OK...there is the quick peek into my life..
Anyone up to five questions.....let me know.

Girl Power

Hi everyone,
Here is a widget that links to a website started by a Rett mom to help raise awareness and fund raise for Rett Syndrome. I found it on Kelly Butler's site and posted it here...thanks Kelly.
I know one of the biggest fund raisers they do is coming up on April 1st where they ask students to wear costumes to school on April fools day and raise money for Rett research. Take a look.....

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 cheaper and now hangs on the wall above our couch....
LOVE IT.....

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.

Wow....another post...

Merry Christmas....a little late.

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 Sabrina is learning really quickly.
Of course it is Christmas time and I decorated the kitchen with gingerbread people. The gingerbread man on the frig is an oven mit...and if you look closely to the right you can see a picture of a boy scout.....Yes folks, that is Frank Kemper and his picture sent to us when he became an Eagle Scout. It has a place of honor on our frig as the only other picture besides immediate family.
Way to go Frankie.

If you look just above the gingerbread oven mitt and slightly to the left you can see a small magnet of my little girls when they were three months old.....

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 justice.

OK...if you look closely you will see a rare pictures of my family. Lief won't let me post pictures of the girls and I totally understand but I think these can be snuck in without a problem. At the top is a picture of Lief and I at our wedding reception.
The little girl with the Easter bunny is Sabrina and the cutie to the right is Kelly. gotta love my girls....I know I do.

There are magnets across the top of wine bottles. We were originally trying to decorate the kitchen with different wine bottles. We have a few plagues up with wine bottles on them and then I bought the magnets. Kind of silly,....we don't drink wine that often....except tonight. Lief and I happened to get a baby sitter and were able to go out to dinner. I discovered a pignot gritio (sp)...I have no idea how to spell it. It was the house wine and the title was in Italian but it translated into " two turns"....it tasted great. I had two glasses and I can still feel the affects two hours after dinner....tee hee....

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 haven't been on the blog lately is because of all the nasty viruses and colds going around. Kelly was in the hospital 12/3 to 12/8 severely dehydrated, low blood sugar and high white blood cell count. She was throwing up for a day and a half and would not even take a 1/4 teaspoon of water. Went to peds and she didn't think she looked that bad....five hours later we went to ER to maybe get an IV for a few hours and perk her up...ended up being transported by ambulance at midnight to a childrens hospital about 45 minutes away. She came home sunday only to go back sunday for more throwing up.....she missed all of school in December. then myself and Sabrina got sick when she got home from the hospital
DH had to work from home, take care of me and two sick girls for a couple of days. Now everyone is well....YEAH....and going back to school Monday.
DD is now up so I have to go....I'll update more later....lots more to say and so little time to say it.

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.