Just about us

the thankful list

2009-03-05T11:11:00.001-08:00

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

2009-01-25T12:34:00.000-08:00

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

2009-01-17T08:28:00.000-08:00

Girl Power 2 Curegreat free widgetsWidgetbox

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...

2009-01-07T18:43:00.001-08:00

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

2009-01-07T18:42:00.001-08:00

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...

2009-01-07T18:38:00.000-08:00

Merry Christmas....a little late.

Another refrigerator picture

2009-01-07T18:29:00.000-08:00

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

2009-01-07T18:23:00.000-08:00

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

2009-01-03T05:56:00.000-08:00

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...

2008-11-23T11:06:00.000-08:00

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

2008-11-11T13:50:00.000-08:00

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

2008-10-25T13:46:00.000-07:00

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

2008-10-19T18:24:00.001-07:00

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.....

2008-09-08T12:34:00.000-07:00

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....

2008-08-21T13:56:00.000-07:00

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....

2008-08-16T08:33:00.000-07:00

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...

2008-08-13T08:01:00.001-07:00

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?

2008-08-11T08:08:00.000-07:00

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????

2008-08-11T07:59:00.000-07:00

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

2008-07-21T14:01:00.001-07:00

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

2008-07-21T12:14:00.001-07:00

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

2008-07-07T13:02:00.000-07:00

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....

2008-07-06T17:27:00.000-07:00

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

Kelly's adapted bunk bed

2008-07-06T17:21:00.001-07:00

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

2008-06-23T11:34:00.001-07:00

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?????

2008-06-23T11:27:00.000-07:00

Tink....

2008-06-23T11:18:00.001-07:00

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

2008-06-23T11:06:00.000-07:00

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...

2008-06-19T15:37:00.001-07:00

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....

2008-06-19T15:35:00.001-07:00

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

One more time....

2008-06-19T15:34:00.001-07:00

Beautiful cows from Hershey PA.. and Chocolate World

pictures...if I can...

2008-06-19T15:30:00.001-07:00

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

Shame on me....

2008-06-19T11:25:00.000-07:00

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

2008-03-24T19:01:00.000-07:00

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

2008-02-24T10:03:00.001-08:00

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

2008-01-26T17:10:00.000-08:00

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

2008-01-22T11:03:00.001-08:00

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

2008-01-19T12:39:00.001-08:00

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..

2008-01-19T12:31:00.000-08:00

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...

2008-01-13T06:25:00.001-08:00

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????

2008-01-05T15:24:00.000-08:00

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.

So raise a glass...have some fun...and when you have a moment....say a prayer for our angel Kelly.

2007-12-31T15:27:00.000-08:00

So I know I haven't posted in quite a while and I've got good reason, as we all do....LIFE.
I posted that they were considering Kelly to have Donnai Barrow Syndrome...well while looking at that,
genetics was able to confirm she does have Rett's Syndrome and probably has a second syndrome, maybe Donnai or another that they might not be able to confirm.
Having a diagnosis is good in that it can make sure we are following up on areas of Kelly's health that could become a concern in the future that may not be causing her a problem now, like heart arithymias (sp), seizures and scoliosis.
The flip side of the coin is all that could go wrong and not knowing, all that other children and women are going through and visualizing these things happening to Kelly. It's easy for others to say, you can't compare or don't worry yet....please....
you can't help but worry and its only human to compare.
Its new years eve and while others are celebrating the possibilities, I'm terrified of them. Of course, this diagnosis is new to us and we are still trying to deal with it and how we are to live our lives and raise our other daughter Sabrina...Sorry for the grim
or some what negative posting. I needed to vent a little.
So raise a glass, have some fun and ...when you have a moment....say a little prayer for our angel...Kelly...

Donnai-Barrow Syndrome

2007-10-17T18:27:00.000-07:00

I know this is not a medical blog but just wondering if any one out there has had experience with Donnai-Barrow Syndrome.
It's a very rare genetic syndrome. Only one person in 200,000 in the US is estimated to have it. My daughter might have it
and there is not much info out there. With only five people in million with this syndrome. Not too many people knocking on congress' door to fund research.
Right now it's a toss up between Donnai-Barrow Syndrome and possibly Rett's Syndrome. Either way Kelly is a happy beautiful little girl who loves to climb on chairs and tables just to keep me on my toes.

Oh and her twin sister who has no medical issues just went poo poo on the potty today......YEAH for all those moms going crazy out there eventually it will happen... Of course she made a mess in her night night diaper. Every day is an adventure. : )

Neck spasms suck

2007-08-21T11:21:00.000-07:00

Back in February, I woke up with a sore neck...thought I slept wrong on it....this happened for a few days in a row.
My neck would get stuck in one place, like if I held my cell phone by my neck or read a story to my daughter while she sat in my lap. I would push my chin with my hand until it didn't hurt.
OK....so after six months of this..I developed a burning sensation in my shoulder...so I thought the strain was getting worse...I guess I'm not so swift.....my body telling me something for quite a while and I need it to yell at me before I do anything.
Went to the Doc.....He shot my neck with litacaine.....that did not help at all.
He told me to stretch the muscle, have my husband massage, take advil and heating pads.

THAT SO DOES NOT WORK!!!!!!!!!!!!!!!!!!!!!!

Any one have experience with accupuncture or know of a type of specialist I should see. Its hurting now as I type this and it hurts when I feed my daughter at the table. Lifting arm at weird angle up and over... or somewhat twisting causing throbbing...

owwwie sniff sniff....so sad

Life goes by....

2007-08-18T06:14:00.000-07:00

So I know everyone is so enthralled with my blog that you've all been dying for the next installment.
My little niece Jennifer turned 19 yesterday.....I miss her lots.
Kelly is out of school for the rest of the summer. We'll be going to LBI on Wednesday for a few days.
Sabrina has some class next week, digging for dinosaurs or something like that.
I'm waiting for my final delivery of drapes from JC Penney so I can pick out a paint color for my living room.
and my husband is still asleep.

Friends of ours are on a cruise in the Caribbean this week. They flew into Puerto Rico and there's a category 4
hurricane in the area. We can't reach them by phone and I don't know exactly the name of their cruise line.
We're hoping their vacation won't be ruined.

What's up with everyone else?

Great Date

2007-07-23T10:34:00.000-07:00

Hi everyone. Guess what? Finally my husband and I were able to go out on a date....and it was wonderful.
We went to an Italian restaurant we used to go to all the time. It's been about three years since we were last there.
The food was still great. Then we went to hang out at my friends house....Hi Sue!!!...
Hope all you other parents out there get to go out on date's with your significant other too.

ho hum

2007-07-15T11:51:00.000-07:00

Ok today is Sunday and my husband was paged into work. I'm home with the kids and should be going to a block party in about an hour but the only people I know who were invited aren't going to be there. yuk. I hate going to parties when I don't know any one. With any luck, it'll thunder storm and we'll come home but that will be just as boring. If I have to play Barbie dolls any more I'll go bonkers. Kelly just wants to climb on me and bite or pull hair. Sabrina wants to play Barbies. I want to read a good book but I haven't had a chance to do that for a while. The only time I can is at night and the girls are getting up early so I try to go to bed early. Ah yes, the nonsensical ramblings of a bored housewife.

Last night I spend over an hour making photo copies to apply for DDD benefits for Kelly. This should help now with respite care and a small stipend to help defray some out of pocket costs. Mostly it is for when she's over 18 years of age and we need help with additional vocational training as an adult or some type of housing. Let's pray for a miracle that she learns to talk and won't need special education in the future. I know its a big stretch......but if I can't hope for it who will?

Bear with me and please read

2007-06-17T16:41:00.000-07:00

I know I haven't posted in a while but things are busy just like everyone's life gets sometimes.
I have come across a couple of emails that were sent to me over the past few months that I would like to share with
the world. I would appreciate it if you take the time to read them and feel free to have others come and visit my blog
to read it. All comments are welcome.

Remember its much harder for them.

2007-06-17T16:37:00.000-07:00

This article is written from the vantage point of an
individual with an ASD (Autism Spectrum
Disorder). The article is reprinted with the
permission of editor/author Viki Gayhardt.
Feel free to reprint and share with your friends and
family during this holiday season.

“Dear Friends and Family” was written for the purpose of it being sent to relatives and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism.

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.

As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD). Autism/PDD is a neurodevelopment disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and where to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.

You might think I am ignoring you—I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful.

I often have to get away from all the commotion to calm down. It would be great if you had a private place set up where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people—I just have to get up and move about. Please don’t hold up your meal for me—go on without me and my parent’s will handle the situation the best way they know.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky—I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.

Don’t be disappointed if mommy hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin , a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.

When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!). Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things—just please be patient with me and understanding of how I have to cope… mom and dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “Self-regulation” or “stimming”. I might rock, hum, flick my fingers in my face; flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.

Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this “perseverating”, which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me “stim” for a while, as they know me best and what helps to calm me.

Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). It hurts my parents’ feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow tippy rules.

I am a unique person—an interesting person. I will find my place at this celebration that is comfortable for us all as long as you’ll try to view the world through my eyes!"

Beautiful Music about Angels on loan from Heaven

2007-06-17T13:37:00.000-07:00

Hi everyone. I am getting more involved with Kelly's school. The past PTA president sent these lyrics to a song written by the music director at the Mercer Junior High School. He is very dedicated and devoted director who happens to be Autistic and a Music Savant. At the graduation this song was sung. It says our special needs children are angels from God sent down to earth to teach us how to love.
Anyway.......below are the words to Alan Rosen's song
Through our Eyes

What is so, and what is not - Do you know just what you have got? Is the world what it seems to be? Or are the scenes so confusing, that you find it all amusing - Well, Maybe - but this is what we see......

Through our eyes, the world's a portrait, With bright colors, red and blue and green, Filled with thoughts that are appealing, and a calm and gentle feeling, paints the scene....... it paints the scene.....

Through our eyes, we see a people struggling, to find their way every day and night. You must learn to make good choices, let the master hear your voices, to make it right...... it will turn out all right.

We are sent to teach you, humility and tolerance, forgiveness, sensitivity, how to cope -- and take a chance. We are your Angels, sent from up above, We're here to share our love - teach unrequited love.

Through our eyes, we pass up to heaven, what we know, because we're wise. It is you who is disabled, and we who are enabled. Our place on earth will earn us wings to fly. This is our disguise, God sees you, God sees you, God sees you Through our Eyes, Through our Eyes, Through Our Eyes.

Just another day in the life...

2007-06-05T10:18:00.000-07:00

Recently a friend said she checked my blog to see what was going on in my life. ...hey that was her on the phone just now. (Hi Sue!) Actually my whole family had a stomach virus and I was thrown up on about four times over the past five day.....wooo hooo.

They say you haven't fully experienced mother hood until you are spit up on, thrown up on and peed on. Kelly peed on me before she came home from the hospital. I was changing her diaper in the NICU and she peed up in an arch like a little boy does...she got me good. Also add sneezed, coughed and pooped. Boy oh boy...I am a fully experienced mother.

Any stories of endearing motherhood experiences any one would like to share???

The Princess

2007-05-21T18:39:00.001-07:00

Medieval Festival

2007-05-21T18:27:00.000-07:00

We all went to a Medieval Festival on Saturday. I can't show my daughters but how about a picture of her from the back
She was the prettiest princess there. Of course we were walking around quoting all the lines from Monty Python or any other
English type movie that would fit.
At one point I said out loud..."Bring me a shrubbery." and some one else shouted out "Neee".
Guess you had to be there.

Happy Mother's Day

2007-05-13T12:05:00.001-07:00

A wonderful Happy Mother's Day to all you moms out there in the world.
We had a quite day and went out for a nice lunch.
I was suppose to get breakfast in bed but Lief was taping a car race and I couldn't watch TV
so he said he'd bring me the paper.
but by the time he got up I had been awake for a half hour tossing and turning because I just
could not stay in bed any longer.
So I got up and helped with the girls. He still made breakfast but I ate in the kitchen.
Such is the life of a mom.....how many of you can stay in bed in the mornings.....?

Finding a place

2007-05-04T18:37:00.000-07:00

Well today I volunteered to be the PTA Treasurer at my daughter's school. The school is for
special needs children in preschool to kindergarten. Actually kids are there from ages 3 to age 7
depending on their abilities. There is actually an entire special needs campus. They are able to
help children from ages 3 to age 21 with school, and all therapies. There is even a school just for
kids with behavioral needs.
Each time I meet a new mom and hear about their families and their challenges, I realized how lucky and
blessed we are.

As for little Sabrina...her allergies were so bad the other night, she had a bloody nose at 3am. All over the
sheets and her stuffed animals. Luckily the bleeding was able to be stopped and the sheets, blankets and
animals were all successfully cleaned. Unfortunately, I spent the night on the couch with her. Or should I
say she slept on the couch, I was half on the couch and half on the hassock. The goal this weekend is
to clean out the fourth bedroom and buy a bed to use when the girls get sick...and as a guest room.

Next step....allergist

2007-04-25T14:35:00.000-07:00

So Kelly is doing fantastic. She took 24 steps without her leg braces last night. Despite being autistic, developmentally delayed, no speech at all, hypotonia (low muscle tone) and as of yet an undiagnosed genetic disorder she is very happy....but her reflux came back in January. She spits up or at times, throws up after eating.
And after drinking even if it is hours after eating. The pediatrician and G/I doctor don't believe she has allergies and I don't know if she does but I'm going to go and check it out. Milk and wheat are in almost everything and nothing seems to help her.
The medicine is almost useless by the end of the day. Surgery is not being considered unless she starts to get pneumonia from swallowing food into her lungs or if she persistantly losses weight. Whereas she's not losing, she's not gaining at this point either.
Sabrina has hit the terrible threes. At the store today, a lady commented on "What a nice little girl!" Sabrina replied, "I'm not nice!" I think that says it all.
Life goes on...How is everyone else in the world doing?

Hi everyone

2007-04-20T19:23:00.001-07:00

Nothing too exciting to report....It's my birthday and I got breakfast in bed.
Unfortunately I was already up because Kelly was crying for me but once she calmed down
I went back to bed, watched a landscaping show and ate a peaceful breakfast.
It was very nice.
Steaks on the grill for dinner...yum and what beautiful weather..
Thank you God for such a wonderful day and family....not necessary in that order.

Another test passed

2007-04-19T07:16:00.000-07:00

Well, Kelly and I spend most of Tuesday at the hospital for an endoscopy test to check to see if she had an problems internally causing her reflux. Everything looked pink and healthy. The procedure itself took three minutes but we were there nearly six hours. She screamed everytime someone touched her, especially because she was so hungry. She hates having any one try to take her blood pressure. I told them it wouldn't work. They never listen. BUT....she is extremely happy usually and is walking all over the place now with her leg braces. She went back to school with no problems after being off for spring break. Yeah for Kelly...

The kids are still asleep....

2007-04-14T05:00:00.000-07:00

Wow it's 8 am and both girls are still asleep. This may not seem like an event to post on a blog to the average person but to a mom of twin three year olds its heaven. I just got up..it's Saturday. No one has to be any where. LIef is off of work this week.
The sun is shining. I think I'll plant my tomatoes and herbs today.....Yeah spring.

Nothing much new

2007-04-13T10:48:00.000-07:00

Today I took the girls to the hospital while Kelly had her six month hearing test. Everything is fine as much as you can test a three year old. They want some type of OAV test but she would have to be sedated as she has to hold still for two minutes.
What three year old can hold still that long, not considering she's autistic.
Kelly was off of school this week so we had her eye dr appointment and hearing test and Sabrina had a dentist appointment.
Let's see we have an endoscopy scheduled at the hospital on Tuesday and the new GI doctor the following Thursday. Seems like we're going to doctors twice a week again. Ah..this too shall pass.

Oh yeah Sue, I thought Thor knew quite a bit of dialogue too but I wouldn't know if he were wrong or not.
I think it's time for a Monthy Python party and this holy Grail (HE HE). Bring me a shrubbery.....

Run Away........

Epi...we miss you

2007-04-10T18:22:00.000-07:00

Must see video

2007-04-10T11:15:00.000-07:00

OK, I'm going to try to link this video so any one can view it.

click here

http://www.whatkindofworlddoyouwant.com/videos
The video is called....The way my brother loves me...
Ok so I don't know how to link yet....I'll get there.
If you know any one with autism, try to see this video.
Beth

My First Post

2007-04-10T11:01:00.000-07:00

OK So I now have a blog...Sue...how do you drive this thing?
I was motivated to start this blog because of a beautiful video I saw about
two brothers, one with autism. I wanted to share this with others but didn't
want to annoy my friends by sending it to them. This way, if I can figure out how
to add it to the blog you can see it if you want.