Positive Exposure - the Spirit of Difference

Positive Exposure - the Spirit of Difference
Please take a moment to visit this amazing organization founded by former fashion photographer, Rick Guidotti.

Mr. Guidotti attended the 2008 CdLS Conference and captured the beauty of our kids through his photography. Click here to view some of those photos.

CdLS Conference 2008

Well, we’ve been home from the CdLS Conference in Chicago for a week now and I am just getting around to posting.

Conference was amazing, as always. A big THANK YOU to the families who made up the Conference Committee as well as the many volunteers, they did a spectacular job. The weekend was joyous, emotional, overwhelming at times, and heartwarming. We reconnected with old friends and made new ones. Best of all was the sense of belonging…to be in a place where others truly understand, where your child is not only accepted, but is the center of attention…in a good way!

Sadly, it always seems to end too soon. I find myself in a bit of a funk after returning home…wishing I’d had more time to talk to friends, taken more pictures, met more families. One funny thing that always seems to happen…must be some “post-conference” phenomena…the first time I encounter a crowd (store, park, etc.) after conference I find myself looking around at everyone expecting to see people I know. Maybe it’s just me?

Anyway, we had a great time while we were there. My friend and co-worker, Debbie, attended with us to help care for Jessica…she is wonderful with Jess and I can’t say enough good things about her! Jessica did really well and seemed to enjoy herself. She loved the indoor pool and she was really looking forward to the “Dance” (Saturday night celebration) and was asking about it from the moment she got off the plane. By Saturday evening though, she was pretty tired so she spent a good deal of time hiding out under the table.

She’d pop out on occasion and dance or grab some food. She even surprised us by heading out to the dance floor and grabbing an unsuspecting man to dance with. I think he might be the man that won the raffle for the 100 lottery scratch tickets…in that case, good job Jess!! Smart girl, hehe

And she definitely slept well after all the dancing…

We’re looking forward to Dallas in 2010!!!!!!

Sneak Peek - CdLS Photo Book

A few months ago I began working on a project to create a CdLS Photo book. This book will be donated to the silent auction at this year’s CdLS National Conference in Chicago (which is next week…yipee!!). Parents from the CdLS Online Support Group donated photos, poetry and other commentary and I put them all together in my first attempt at digital scrapbooking. I’ve previously created photo books using Picaboo (basically just used their pre-created templates and drag-n-dropped the photos) however, after hearing many good things about the quality of Shutterfly photo books I decided to give them a try. I also liked the fact that Shutterfly offered a 12″ x 12″ size photo book (standard size for scrapbooks) and you could create custom photo covers and have the title printed on the spine.

The completed book arrived today and I am just thrilled with it! Thought I’d share a sneak peek with you (photos below). If you’ll be at the Chicago conference, you can check out the book “in person” at the silent auction table. After the conference I’ll be posting a link to view and/or order copies of the book. Enjoy!

See you at the conference!

First School Dance

Last Friday, Jessica’s school held their first Prom. It was technically for the graduating class but everyone was invited to attend. For days beforehand, Jessica talked about going to the “dance.” Since she seldom gets excited about social events, I decided we were definitely going! Amanda and I were her “dates”–though I’m sure she would have preferred her schoolmate who she’s been crushing on for years

I wasn’t sure how long Jess would last -she becomes easily overwhelmed in crowded or noisy environments. But once again she surprised us! She had a great time, mostly walking around saying “hi” to her teachers and friends and looking at the decorations…she even “busted a move” here and there. When things got to be too much she would find a spot near the wall and sit on the floor until she felt like wandering again. However, when they brought out the limbo stick and started playing the limbo song she lit up. The limbo seemed to be the highlight of the night for all the kids. After that we decided to head home. Jessica protested, but she was really dragging and ready for bed. What a great evening! She is already asking if she can go to the dance again.

Amanda & Jessica getting ready for the dance.

Practicing her dance moves before we leave!

On the dance floor…literally

Limbo queen!

Drum roll please…

…after 11 years -and more $$ in diapers and pull-ups than we’d like to think about -Jess is finally toilet trained! Daytime only for now, but we’ll take it. She is very proud of all her pretty “big girl” underwear.

Hmmm, whatever will we do with that $400-$500 we’ll save every year now?

Happy Easter

Bet you’ll never guess what we did today

So, after listening to Jessica screech “eggs, eggs, eggs!” for half an hour I finally gave in and boiled the eggs for the kids to color. Jess and I made the boring traditional color eggs and Amanda made the cool multi-color ones (wet a paper napkin with vinegar and then randomly drip food color on the napkin, then wrap it around the egg…warning, its very messy!).

Jessica approved of the results.

 

 

And found the eggs quite amusing.

 

 

And this is the result of leaving her alone with the eggs for a moment:

 

Guess she likes them crunchy. Happy Easter everyone!

Blog Challenge: Jessica 101

Many thanks to Sonia and Christy for this fun blog challenge!

1. At birth, Jessica weighed 4 lb. 3 oz. and was 17″ long.
2. She is now 4′ tall and weighs 71 lb.
3. As a baby, she once scared the daylights out of a grown woman who thought I was carrying a doll…until Jess started moving.
4. Jessica loves to be the “boss.”
5. Once at the pharmacy she had the entire line of people behind me clapping (see #4).
6. Jessica loves airplanes. She has a growing collection.
7. She loves music…the louder the better!
8. Sponge Bob & Goofy are her favorite cartoon characters. Not sure why because…(see #9)
9. She hates to watch TV.
10. Her favorite foods are cheeseburgers, dill pickles, yogurt, fruit, green beans.
11. She thinks ketchup makes a fine meal…the fries are just utensils.
12. She thinks soap, lotion & toothpaste should be an official food group on the USDA food pyramid.
13. All toiletries in our house are under lock and key (see #12).
14. Jessica is always on the go, she rarely sits down.
15. She is very bossy.
16. She is the only person I know who loves to get junk mail.
17. She loves looking at magazines, sales fliers, and newspapers.
18. She also has quite a horde collection of them (see #17)
19. Her bedroom looks like a tornado hit it (see #1
20. She loves to play in the bathtub.
21. Her laugh is infectious! She is always giggling about something.
22. She has a great sense of humor. She fancies herself quite the comedian…(see #23)
23. If you don’t laugh at her pratfalls, she will remind you that she is funny…and continue to do so until you laugh.
24. Did I mention she was bossy?
25. Jessica loves going for car rides. We go everyday. The entire neighborhood thinks we are stalkers.
26. She is fascinated with animals, but also afraid of them.
27. She talks a lot now, but is hard to understand sometimes.
28. Her favorite word is “NO.”
29. She loves to mimick what others say and do. Sometimes she will play out “scenes” from her day. She plays all the parts herself. We haven’t decided if this is cute or scary
30. Her big sister is her favorite person.
31. She makes us laugh everyday.
32. We wouldn’t trade her for the world.

Say Cheese

Finally!! The moment I’ve been waiting for. A good school picture! I can’t begin to explain the level of joy and excitement this brings. Yes, my friends and family think I’m weird…but hey, they just don’t realize how hard it is to get a good photo of this child. And she’s so darn cute (at least we think so!) you’d think it would be easy. But she HATES having her picture taken. Believe me, for each good shot, there are at least 50 bad ones. Imagine what it was like back in the “Stone Ages” -before the miracle of digital cameras- when you actually had to purchase film and then pay to have it processed. Ugh…to think of the money we spent! Those were some expensive photos. Anyway, hats off to this school photographer

P.S. - I’m also thrilled that her hair is growing back!

11 Year Check-Up

We took Jessica to the pediatrician on Thursday for her yearly check-up. The first shock was that she did so well, sitting nicely in the waiting room and then again in the exam room (we’re still not quite used to the “better behaved” Jessica). The second shock occurred when they put her on the scale…71.4 lbs!! And here I was thinking her weight gain had leveled off only to find out she’s put on 10 more pounds since her last visit 3 months ago. That makes for a total of 26 lbs. she has gained since she started taking medicines for her behavior in May. She’s also grown an inch and a quarter and is now officially a 4-footer!

The doctor says her height/weight ratio is still okay, but he’s worried about the rapid weight gain and wants us to ask the child psychiatrist about switching to a medicine that doesn’t have weight gain as a side effect. Other than that her visit was fine. We left with referals to see an orthopedist (the toes on her left foot are bending to the left) and to check in with the heart doc (at her geneticist visit this summer they thought they heard a murmer).

She also got two shots while she was there. She was not happy, but she was quite stoic during the shots…only to throw a fit because the nurse put band-aids on her arm. Once she peeled off the band-aids -and threw them on the floor in a dramatic display of annoyance- she was perfectly happy and wanting to know if Daddy was taking her to get a burger

Which is Witch?

Hmmm…well they both have been known to ride a broom at times!

I thought it would be cute to post photos of Jessica and Marci (left) in their matching Halloween sweatshirts (made by Marci’s super-talented mom Vicki). Notice how they both hold the same arm up? They truly are “psychic sisters”…hehe! Vicki and I are always amazed at the similarities between these two even though they live 400 miles apart and have only seen each other in person a few times.

I swear that they communicate by telepathy. The first time Marci came to visit was about 8 years ago when Jess was only 2. Marci walked in the front door and proceeded straight to Jessica’s room –she’d never been in our house before! We all stood there dumbfounded. The two played in there happily for quite a while…I believe Marci used the time to impart all her strategies guaranteed to annoy parents wisdom to Jess.

The second time we got together was about a year later when Vicki and I co-hosted a CdLS family gathering. At some point Vicki noticed Marci (who I must point out loves hair bands…she wears them on her arm) had a number of hair bands on her arm that were not hers. We watched. Marci stood there as Jess ran around the room stealing hairbands from other kids and putting them on Marci’s arm. Tell me these two didn’t plan that!?