Friday, May 30, 2008
7TH ANNUAL HAYHURST KIDS' TRIATHLON
This is AN AWESOME VIDEO of Mr. Hayhurst - PE Teacher & uncle to Anna who has arthritis - this is his passion: Newschannel 8 at Sunrise.
7TH ANNUAL HAYHURST KIDS' TRIATHLON
Date: Saturday, May 31st, 2008
Time: 8:00 AM
Venue: Conestoga Aquatic Center
Address: 9985 SW 125th Avenue in Beaverton, OR
Description: Family friendly event for kids, ideally between 3 and 13 years of age.
Events include a 50- or 100-yard swim, a 2-mile bike ride, and a ½-mile run.
All athletes receive a medal and a t-shirt. Non-timed competition... Everyone is a winner!!
Additional Information: All athletes must be set-up and ready to race by 7:45am.
Mandatory race meeting before the start of the race.
All proceeds go directly to CARRA.
Additional donations will also be accepted on race day.
Fees: $12.00/day of race
Thursday, May 29, 2008
I will never forget the 1st day of the 4's class last year, wondering, "how do you meet mom's @ preschool?" Then it happened & the playdates happened (ours & theirs) & the emergency phone calls of "Oh my gosh I am totally late, can you pick her up?" happened & now we have amazing friends that are scattered around the area that have touched my heart, taught me their passions & most importantly shared themselves!
I include the teachers in that, they have become a part of our family, have been OH SO supportive during our news of Charlotte's disease, learned with us, shared with us. They are so loving to the children & are excited about their teachings & in turn it has gotten Ellie excited, she couldnt wait to go to school EVERY DAY!... They are crazy about Ellie & in turn, she thinks they are the cat's meow! Many of us will reunite when our younger ones start the same path of the 4's class one year, the pre-k the next (didnt make that cut off for the 3's class).
By Christina Lent
The Beaverton Valley Times, May 22, 2008
Bella Smario, a Scholls Heights first-grader, has childhood arthritis but won’t let that stop her from being the grand marshal in an upcoming 5K walk.
An exciting day is ahead for 6½-year-old Bella Smario.
The Scholls Heights Elementary School first-grader will serve as the grand marshal of the third annual Race for CARRA, a benefit for the Childhood Arthritis and Rheumatology Research Alliance.
The 5K family walk and run begins at 8:30 a.m. Sunday, June 8, along the Willamette River on the Eastbank Esplanade in Portland and around the Oregon Convention Center.
Bella thinks it’s pretty “awesome” that she’ll be the star to kick-off the event.
“I get to say, ‘On your mark, get set, go!’ – and start everything,” Bella said.
At the same time, she and her close-knit family will also help raise awareness for the search to find the cause and cure for arthritis and other painful rheumatic diseases in children like Bella.
Bella has systemic juvenile rheumatoid arthritis.
Her parents, James and Olivia Smario, first realized something was wrong with their youngest daughter in the summer of 2006 when a persistent rash popped up.
After making diet changes; switching the soaps, detergent and shampoo Bella used; and several doctors’ visits, doctors seemed to get the rash under control.
Just when the Smario family thought Bella would be fine, the Beaverton family was hit with a devastating blow.
“One day we went to pick up her sister at soccer camp,” James Smario recalled. “Bella played tag and soccer, but then wanted me to carry her because she was in pain.”
Bella spent the next three days in bed with a high fever and pain in her ankles and legs. It hurt for her to move any part of her body.
Her parents took her to Doernbecher Children’s Hospital, where she was admitted for 11 days and underwent a series of tests that eventually revealed Bella had a rare form of systemic juvenile rheumatoid arthritis.
With no known cause or cure for the condition, doctors began the process of trying to find the right combination of medications to manage Bella’s pain and flare-ups.
The next year was a tough one for Bella and her family.
“The hardest part was getting out of the hospital and seeing a change in Bella,” her father said. “She realized something was wrong and experienced some clinical depression.
“She would lay in her room. The street would be full of kids outside playing, and I’d come in and find her in her room alone. It was heartbreaking to see her not wanting to be around anyone.”
At the same time, Bella began kindergarten and found it difficult to keep pace with her young peers.
“She was in a lot of pain,” recalled James Smario.
Nearly two years later, Bella takes a combination of eight medications daily.
“We’re struggling a bit to figure out the combination that is going to work for her,” said Dr. Daniel Kingsbury, Bella’s pediatric rheumatologist at Legacy Emanuel Children’s Hospital. “She’s functioning far better, but she’s not over the hump.
“She’s a work in process. Unfortunately, every treatment has issues.”
Bella wakes up stiff and has trouble getting up and moving.
Her day begins at 5:45 a.m. when she takes her first medication in bed, sleeps a little longer and then takes a long, warm shower before heading to school.
“Some days I’m okay, and some days I’m not,” Bella said. “I sleep in when I’m hurting.”
On a good day, Bella enjoys playing outside with her 10-year-old sister Brianna, swinging, taking turns on the slide, doing activities with her Brownie Troop 1294 and drawing.
“She really enjoys swimming,” her father added as Bella listed off her favorite things. “She’s in her element when she’s in the water. She’s like a little mermaid.”
The swimming could come in handy in Bella’s future.
“I want to be a scientist,” she said. “I want to study and swim with dolphins – they’re my favorite.”
Bella’s winning personality and ability to cope with the struggles and chronic pain associated with arthritis made her an ideal candidate to serve as the grand marshal of the Race for CARRA.
“She’s a trooper,” James Smario said.
“She’s adorable,” added Kingsbury. “She’s really been dealt a difficult set of cards.
“I’m certain she’s feeling miserable quite often, yet she still embraces life.”
Debbie Wright, founder of the Race for CARRA, said Bella was the first person who came to her mind to serve as grand marshal.
“She will be fabulous,” Wright said. “Her sweet, dear, little face will touch the lives of a lot of people out there.
“I hope the experience shows her that there are so many people who really care about her and other children like her. I hope she looks out and sees all the families and people gathered who are working really hard to find the cause and cure to ease her pain and allow her to live a pain-free and care-free life. It’s going to be an amazing day.”
Brianna Smario is excited for her little sister to shine in the spotlight. She’s also looking forward to participating in the event with members of her Westside Metros’ Red Magic soccer team.
“I think it’s exciting that Bella gets to be in the front and she gets a wonderful chance to walk and have fun,” the fourth-grader said. “I think people should know that Bella’s just the same as other kids, she just has a harder time doing what other people can do.”
For more information about the Race for CARRA, visit www.raceforcarra.com.
Tuesday, May 27, 2008
Sunday, May 25, 2008
New Alligator w/ teeth clips on the left (blue w/ polka dots) - they grip GREAT! & 10mm square snap clips w/ "non-slip grip" on the inside. As always, Tottie is my tester & they hold fabulous!
Friday, May 23, 2008
- Try to keep your food to as few ingredients as possible (example, gardenburger has 40some ingredients - there is another portland brand that has 4! LOOK for it at New Seasons!!). Its just BETTER for your bod - more true to the source, more natural, is better for your body, your health!
- For protein, shoot for RICE protein over WHEY protein (easier to digest - am going to look for that in the drinks).
So speaking of food & simple ingredients.... We had friends visit last night & got to mingle over Gorgonzola Cheesecake - its DREAMY (thank you Teresa, my Demarle Guru - PS: use a demarle mold for easy maneuvering!):
Blue Cheese Walnut Cheesecake (I actually use Gorgonzola cheese and don't use walnuts.)
2 8 oz. pkg. cream cheese, softened
8 oz. (I actually double this) crumbled blue cheese
2 1/4 cups sour cream, divided (I use less than this, see below)
1/8 tsp. pepper
1/2 cup chopped walnuts
sliced star fruit
Preparation time: 15 minutes (needs to refrigerate overnight)
Cooking Time: 35-40 minutes
Place Sponge Cake Mold (you can use any mold) on Perforated Baking Sheet. Set aside.
In a mixing bowl, beat cream cheese and blue cheese until fluffy. Add 1 cup sour cream and stir until blended. Add eggs; beat on low speed just until combined. Stir in pepper.
Pour into Sponge cake mold. Bake at 325 degrees for 25-30 minutes., or until center is almost set (top may crack).
Let stand on a wire rack for 5 minutes; spread with remaining sour cream (I have skipped this step the last few times and I like it better without the extra sour cream). Bake 5 minutes longer. Cool on wire rack for 10 minutes. Run cake server knife around edge of pan to loosen; cool 1 hour longer. Refrigerate overnight. Unmold cheesecake and sprinkle with walnuts (I don't use nuts). Garnish with grapes, star fruit and herbs if desired. Serve with crackers.
Thursday, May 22, 2008
Thank you so much for sharing your daughter with us! She is too cute in her stylish Jill Jester BabyLegs! We love getting amazing pictures and stories like yours here at the office, it makes our job all the more enjoyable to look at cute babies sporting our BabyLegs!!We are so happy to hear you love our product and find so much function as much as we hoped our customers would. Be sure to check out our new Summer 08 and seasonal releases that are now up on our website (http://store.babylegs.net/catalog/New).
Charlotte should be appearing soon in our Customer Photo gallery, so be on the lookout sometime later next month for her big BabyLegs debut!!Thanks again for taking the time to share your pictures with us and all of your BabyLegs support is much appreciated!
Saturday, May 17, 2008
anyone need new biz cards?during may & june, you get this beautiful card case w/an order of biz cards.do you have your 411 cards, for when you meet those fun moms at the park & you want to get together again?what about when the dr. wants to fax the results to you,can you whip out your 411 card?i have one friend who's in charge of her school auction -
what giving it to vendors? my other friend is working in the
city this summer at an internship law firm - what about your card for meeting up @ the Obama rally after work?
Friday, May 16, 2008
Wednesday, May 14, 2008
Tuesday, May 13, 2008
from Celebrity gossip juicy celebrity rumors Hollywood gossip blog from Perez Hilton by Perez Hilton
The 70's classic Electric Company is coming back to PBS!
Y'all can look forward to hearing kids across the land screaming EC's famous opening, "Hey you guys!"
Production on the new Electric Company started this week, Tuesday.
The show’s new format will encompass interactive online elements and community-based activities across the country.
Music for the show's being looked after by Broadway babes, Chris Jackson, Thomas Kail and Bill Sherman (all from musical In the Heights, which was just nominated for a bunch of Tony awards).
We want Lambchop or Madam to come back next!!!!!!
Sunday, May 11, 2008
I wont share the details of that worry, because now I know its nothing to worry about, and why we may not always get what we want, we always get what we vibrate, & I dont want to have any negative or doubtful thoughts about Charlotte's progress & future. SO!
The great news is :) Charlotte has a bi-lateral ear infection. I can talk that way because sometimes I feel like I am practically onbe of Charlotte's doctors, or I just play one on TV! HA HA! So an ear infection in both ears is something to celebrate for Charlotte - isnt that crazy?!
So I am also learning that when my daughter writes a Mother's Day Card at school & delivers it to me & it says, "You are the craziest person I know," it can make me cry! She thinks I am crazy & I cry - HA HA HA! No, I shouldnt be pregnant, it was just super cute & funny & totally her & I love it when she writes, she's eloquent for 7 in MHO! She said more than that & it was beautiful, but the crazy made me laugh!
I am glad she sees it, here I thought she was ignoring my one woman shows when I dance & sing for them at the dinner table. Glad to see she recognizes my talents & I mean that in the literal sense!
What a great Mother's Day! Ear Infections & Crazy! WHOO HOO!!! :)
Saturday, May 10, 2008
This is a GREAT website for your perusal & usage.
Practical Pediatric Information For Moms by Moms (And Doctors)
We are 2 Moms, 2 Docs, with 2 Husbands, 4 Children, 2 dogs & 2 silver minivans
PS - Doc called back & wants us in the office on Sunday morning if her fever is still there, because that would be day 3 of a temperature in a JRA child. Or what she called, a "not well child." UGH with the terminology.
Thursday, May 8, 2008
Swashbuckling ROBIN HOOD Opens Friday.
Use the link below to GET TICKETS NOW:
Top 10 Reasons you simply should NOT MISS Robin Hood:
(in no particular order)
2. MORE SWORDFIGHTS.
3. KENDALL WELLS. Take our word for it: this guy knows how to brandish a sword! He’s one of the best martial artists in town and is astounding as Robin Hood. Kendall, who won a 2007 Drammy Award for his fight choreography in Macbeth (Northwest Classical Theatre Company), is also Fight Director for the show.
4. WHIP FIGHTS. Just to mix things up a bit.
5. COREY BRUNISH. Need we say more? Well, what the heck... Corey is the first Equity guest artist to appear on the Blue Monkey stage. And according to Director Brian Allard, he and James Peppers (who plays the Bishop) are a "comedy dream."
6. MAID MARIAN. Don’t even try to "fence" her in! Played by Kristen Martz, this Sherwood Forest gal holds her own in the sword-fighting department, among other things.
7. ROMANCE. Amidst all that robbing from the rich to give to the poor, Robin Hood and his Merry Men manage to steal the odd kiss (or perhaps have it stolen from them!).
8. (Very) TALL MATT HAYNES AS LITTLE JOHN. Has an actor ever been born to play a role this much?
9. MEDIEVAL HABERDASHERY, HILARITY and other HIJINKS.
10. Did we mention SWORDFIGHTS?
WHAT: Robin Hood
WHEN: May 9-June 8 (Fri & Sat at 7 pm; Sun at 2 pm)
WHERE: West End Theater, 1220 SW Taylor
WHO: Everyone! Best for ages 5 and up.
TICKETS: $20 adults $16 students/seniors
Buy online at www.bluemonkeytheater.org (or use link below) https://www.ticketturtle.com/index.php?show=2635
Or call 503.593.2466
Charlotte travels like a champ! She did a great job in the airplane. Thank you Play-Doh & the Alaska Dig-E-Player (no inflight movie for a 5 hour flight - seem weird to anyone else?!?!).
Boston Cab drivers are NUTS & do not care to save the ears of innocent children with their colorful language towards other drivers. I have written down every word heard for our future "story" & wish I could share here, but its too offensive for a family blog. Just know that we were laughing the whole time & shaking our heads in disbelief & then to be funny, used that language on each other later in the trip for fun :)!
Marriott Residence Inn employees are the NICEST! And they have candy jars in the rooms full of yummy hard candies (& those were gone in about 24 hours).
Children with bows & sunglasses get a lot of attention. There's a theory for you :) And proved positive!! In Dr. Foster's office you were either 100 or Charlotte. So it was nice that little Miss Sunshine put a smile on the eye-patched patients.
Dr. Foster's staff is equally all those things & more & nice!
Charlotte's eyes are gorgeous according to uveitis specialist Dr. Stephen Foster. No damage, they are beautiful (details spared) & she's on the right cocktail of a weekly shot & monthly infusions (MTX & Remicade).
He wants us on that medical duo for the next 2 years as her body will slowly ween off it (as it grows) at the same dosage amount. We will see him in 2 years if life stays this good. We couldnt be more HAPPY! Bottom line he said keep your eye on the goal of getting the eyes controlled & staying off of the drops (they are steroids & can be just as damaging as NOT treating uveitis). We will ween those 1 hour per week LESS after our next infusion.
We celebrated! And everywhere we went, angels were planted to remind us to celebrate, to share in our joy of Charlotte & to give thanks! WE DID! I would like to thank the beautiful Italians in the North End for their warmth, humor & kindness that afternoon.
And while I know I am not one of their decendants & do not plan to move into that neighborhood (I heard from a local that they love visitors, but if you arent italian, dont even think about moving in there - for your own safety!!! Oh my gosh, Jersey has got NUTHIN on the North End - it was awesome!), we sure enjoyed our afternoon & looking at the gorgeous churches & reliving history that went through there (Paul Revere, the 1st Church, the 2nd Church, chains from Old Ironsides)!
Eat like a local! Cambridge Brewing Company paired their homemade brews to cheeses and fruit. OH MAH GAWD! Who'duh thunk, spare the wine, add the beer. It was the best treat after being on a plane for 5 hours (that was going, coming home, add 2 hours + headwinds).
Emma's Pizza is an AMAZING pizza place to celebrate - UNIQUE doesnt begin to describe the pizza we had but the NW has NOTHING like this & so we were just vocal with every bite on its yumminess (yes a little like Sally in when Harry Met Sally, but not as dirty, totally true to the food :)). Picture this - on our pizza was traditional sauce, mozzerella, bacon, yukon gold potatoes, cilantro, dried cranberries.
I cannot even BEGIN to tell you how the flavors of that combo blended in my palate to be the most AMAZING meal. Truly - i had to go with it when i read it... i didnt set any expectations but "wierd but ok" - OH MY WORD! And so! Every Emma (& the Ellie's that love them) is getting a shirt! Made friends with the owner. It might have been when he asked me to pipe down my OHMYGAWD THIS IS FANTASTIC :) hahahaha!!!
We did find our starbucks in the bottom of the marriotts scattered around (thank you!) but its funny, the locals prefer dunkin donuts iced coffee over anything! I didnt get to try it (darn it) but they swore by it. oh & they swore, did i mention that?
The subway rocks - it was pretty cool! Charlotte even got a honk & a wave from the driver as he wizzed past!
Harvard is gorgeous & bustling. But i just wanted to close my eyes & let the intelligence seep through my pores. Alas, its gated & locked up. !!! So we ate at a landmark across the street where we got to watch our daily dose of crazy front row style :) Tellin' ya, the people are colorful & fantastic :)
Charles River tour was an educational way to end our trip & relaxing too. Learned that Boston University is the #1 employer of Boston residents. 38% of the residents are college students (I cant even begin to name off all the colleges, but i suppose if you live there, there's no reason for your child to leave to attend school!!).
We missed the girls - The E's! - and started to plan our next trip with them in mind (would be fun to take everyone & plan a weekend around it!). We were pointed in some great directions this trip from my sweet friends sister & her contacts - so AWESOME! Thank you Katy! We brought back educational goodies (2 books, 1 on the presidents & "MAKE WAY FOR DUCKLINGS" which was set in Boston - caldecott winner, classic) & Charlotte brought home fun for them (lil'kinz) :)GREAT TRIP! We are tired & thankful! What time zone are we in NOW?