Friday, May 29, 2009

Here & there....

Ah the busyness of life sure does slow down the blogging a bit. But taking a break from packing the "snack bag" for tomorrow's triathlon is an appreciated task!

Here's what's up!
1) Triathlon
2) Recipe
3) Methotrexate question

1) Tomorrow morning is the Hayhurst Kids Triathlon that I mentioned in my last post. Its teachers like Mr. Hayhurst, an elementary PE teacher, who changes the lives of children & inevitably changes the world to be a better place! Health=Happiness=Peace on Earth! This is his 8th year & all the money raised for this event goes to childhood arthritis & rheumatic diseases research. He's a triathlon man himself, plus an uncle to his niece who has a rheumatic disease. He's a good man, cheers to Mr. Hayhurst tomorrow, please :)!
This will be Charlotte's first year, she is going to run the 1/2 mile :) (wink!). We shall see! The other two, I am hoping that they will do all 3 events just because I know they will be so proud of themselves afterwards to complete all three. But I had to go over some visualization techniques with Emma tonight who isn't feeling confident about her swimming ability because of last year (her 1st race & before she gained confidence that she COULD swim). Wish her luck tomorrow:) Ellie will do whatever Emma does :) or if there's a cookie as a reward! Packing those too!

2) Went & scrapbooked tonight, yet somehow I am still working on Christmas 2007.... How long does it take to get Christmas Oh Seven completed? But the food was yummy! Amber made brownies that she put marshmallows on the top, they got ooohee & gooey & were sooo good! We are big fans of Demarle cookware. She did the brownies in a star mold - so cute. I brought Fruit Flowers that have 12 little flower molds, they looked sorta like the picture, but cuter :):

Yield: 12 servings
Ingredients 1 16.5 ounce roll Pillsbury Sugar Cookie Dough

6 ounces cream cheese
4 ounces vanilla yogurt
1/2 teaspoon vanilla
2 teaspoons lemon zest
1 cup assorted sliced fruit and berries
Any combination of fruit that you would like or that is in season. Blueberries, blackberries, strawberries, sliced peaches, kiwi or even bananas.

If you are looking for a recipe that will “Wow” people with the presentation this is the one. You can replace the sugar cookie dough with brownie or cake mix and you can get as creative as you want with the fruit. For 4th of July I make these using blueberries and raspberries. Red, White and Blue!

Directions Make sure the oven rack is in center position and preheat oven to 350 degrees.Place (12) Square Tray (I have a cute flower tray) on Perforated Baking Sheet. Cut sugar cookie dough into 12 equal slices. Place in Square Tray and press down to cover the bottom of each square. If you wet your fingers it will help to keep the dough from sticking to them.Bake for 18 minutes or until golden brown. When done let sit for 5 minutes then take out and cool cookie cups on cooling rack.In a bowl mix the cream cheese, yogurt, vanilla and lemon zest until blended. Use your heat resistant spatula to fill the pastry bag. When cookie cups are cooled, fill the square indent with the cream cheese mixture.Decorate the top of cream cheese with the berries or sliced fruit you have chosen.Chill for at least 1 hour before serving.

3) Never would have thought about this - but share with me what you know please! I have a prego friend who is giving her daughter methotrexate injections. Since she's prego, is there a reason WHY she SHOULDN'T be giving methotrexate to her daughter? There is nothing in the label that says anything about it, but another JRA Mother who also happens to be prego, brought this up to my friend. We couldn't find anything online about this.... And I know that my nurses at the hospital (who both are prego) have to call in another nurse to hook up the methotrexate and the remicade for Charlotte. If tomorrow weren't Saturday, I would call & ask them, I will on Monday. Reader: Do you know anything & can share? Thank you!

Tuesday, May 19, 2009

Hayhurst Triathlon '09

For the past 8 years, Mr. Hayhurst (an elementary PE Teacher) has been coordinating a family fun event to showcase a triathlon to children. Children are invited to do one, two or all 3 events & we parents join right alongside - and all the teachers from Mr. Hayhurst's school are there clapping & encouraging the children as well!

100 yard swim (or dont!)
2 mile bike (or skip it)
1/2 mile run (maybe this is for you?)

Or all 3 if you are willing to give it a try! Its non-competitive but FULL OF FUN & encouragement! Every child that crosses the finish line gets a medal put around their neck by Mr. Hayhurst!

He's also the uncle to a little girl with a rheumatic disease. So your registration to participate goes directly to find the cause & cure for children like his neice & our Charlotte!

Are you in the Portland area on Sunday May 31st? For more information or to obtain a registration form send an email to: hayhursttri@gmail.com

Thursday, May 7, 2009

Are you planning your costume?

Getting ready for the 2009 CARRA COSTUME BALL! Just got these masks shipped from New Orleans for our poster photo shoot. 4 little girls with JRA will wear these masks to publicize our family fun costume event happening in October. Its a great time for the whole family to enjoy the spirit of the season, family games, food & lots of fun dancing & competitions!

October 17, 2009

My friend Laura & I started this event last year out of the drive to help heal our daughters. All the proceeds from this night will go to CARRA - Childhood Arthritis & Rheumatology Research Alliance: Pediatric Rheumy's in the US & Canada doing amazing research & clinical trials to find the cause & cure for Childhood Arthritis!

New this year will be the "Lara Blair Photo Booth" where you can get your family picture taken for $25 & receive a free 5x7!!

Yep.... thinking fall.... Send me an email at carracostumeball@gmail.com for me to remind you about the event closer to the date! We would love to see you!

Charlotte went to her Remicade treatment today. Its been a year now that she's been going every 4 weeks for these chemo treatments. Today was the first time we stretched it to 5 weeks. She did GREAT (according to Daddy who took her since I was on a bus w/ 2nd graders for a field trip). She wasnt happy to be there, like always, but after the initial poke, it was done & she did great! I think there is something to getting older, knowing that its really not an option no matter how much you act out, but the whole older & talking her trhough it, I think is helping.

Two of our friends didnt have great days having appts w/ Dr. Foster in Cambridge (read Jenna & Jacob - blogs are linked on the right hand side), so this disease continues to frustrate & anger.... and that's why I try & focus on the Costume Ball & want to sing, "Put on your Dancin Shoes!"

Monday, May 4, 2009

Moving Forward

.... continuing from last post: The Dr. recommended we do stretch out Charlotte's current Remicade treatments from 4 to 5 weeks. He believed this was a good route to take given her current ability to hold steady since August w/out steroid eye drops. The route we are taking w/ Remicade & MTX is working, now lets see how well its holding & if we are starting to nip it in the bud.
So this Thursday is the 1st 5'weeker (like a niner) Remicade treatment. We just had her eye appt today where all is quiet in the pretty blues. Charlotte also had her eyes dilated since we hadn't done that in awhile. That wasn't fun for her but necessary. It allows the ophthalmologist to look at the optic nerve & make sure there is no damage there. It also allows her to check vision more accurately than the picture tests Charlotte wings every month (we adults do letters, children do visual pictures of single objects: hand, car, cake, horse, telephone).

All is good. Amazing body clock in her though, she's been asking since this weekend when she is going to the hospital. She knows its coming....without a calendar its like her body alarm has gone off & she wants to prep the pouting, the depression, the whining :) Its good to get a head start on those things! HA!
We had some hot cocoa tonight w/ dinner since the rain wouldn't stop & it was a bit stormy: some warm chocolate was needed! So here's the girls after getting a shot of whip cream in their mouths! (another piece of evidence that we wear a Tottie's Prettie every day, even w/ jammies!)