Thursday, September 30, 2010

How To Write a Book

Attending fabulous events like the RACE FOR CARRA, always gets the kids asking very thought provoking questions about childhood arthritis.
Last weekend we had some super great kids who wanted to know more & I got an email from one mom who said her 4th grader was asking some pretty inquisitive questions about the disease.
About a year ago, I got to speak to a girls soccer team, they were about 12 & 13 years old. They asked questions like, "How do you know if someone has arthritis?"

Questions about childhood arthritis have inspired me.

I have described to Charlotte's sisters with visual pictures, how the disease works in Charlotte's body so they can have a picture in their head & understand the miscommunication going on in the body & the arthritis affects on the joints.
After this weekend... I've been inspired to get out that pen & paper. I would like kids to understand in a simplified way of how rheumatoid arthritis affrects the children that they have met, including Charlotte.
So I will scratch out my thoughts on paper, transcribe them to the computer & then what? Google "How To Write A Book?" Hmmm.... The search is on... Help?

Sunday, September 26, 2010

OUR Race for CARRA

Childhood arthritis is the #1 cause of acquired disability in children and is the 6th most common childhood disease (following asthma, congenital heart disease, cerebral palsy, diabetes and epilepsy). It is estimated that 300,000 children in the U.S. suffer from some form of arthritis or rheumatic disease, but many questions about these diseases remain unanswered: What are the best treatments? How did the diseases start? What are the long-term outcomes? How can damage be avoided? Pediatric Rheumatologists from the US & Canada (CARRA - Childhood Arthritis & Rheumatology Research Alliance) collaborate to research & study these questions.

The best people ever supported fundraising efforts to find a cause & cure for childhood arthritis by running in the pouring down rain today for 45 minutes.
They were amazingly supportive ... because it wasnt a pretty day to run. But they did it with smiles & laughter & chatted with friends, had snacks & won raffle prizes! Thank you all!
This year, Friends of CARRA (non-profit group that supports the Doctors by fundraising for their efforts) said, "pick an activity, tell us what it is, we will send you shirts & you do what you choose & raise awareness at the same time."
We chose to run/walk/skip/sing & laugh! :) However, we didn't successfully dodge raindrops!
It was a pull together of 4 families in our town with children affected by arthritis to support CARRA (Childhood Arthritis & Rheumatology Research Alliance).
These are our amazing friends & family!
These are awesome people!!!!!
Awesome people who were very wet but ran their hearts out!
Thank you for your support of kids with arthritic & rheumatic diseases!
Thank you for supporting the Doctors that are working to register all of them so that Charlotte can be followed by other Dr.'s in the nation as to what treatment worked for her uveitis.
That's the current project CARRA Dr's are collaborating on right now - a REGISTRY of children! When Charlotte was diagnosed, there was no footsteps to follow. Now there will be database of these children & their diagnosis, drugs used plus results & effects of these drugs on her in the future will be followed.
If your child has arthritis or a rheumatic disease, please ask your Pediatric Rheumatologist about the CARRA Registry (they have funding by NIH but then need a certain amount of children to be registered to keep funding alive). And thank you again to our amazing friends & family for being so beautiful in the pouring rain!

Sunday, September 12, 2010

Eat More Cake!

Happy 5th Birthday to our Charlotte Ann (aka Tottie)!
Pictures of Charlotte from her past 4 birthdays!

Making the fun:

- Friends: Cody, Gracie, Mia, Ryan, Amelia, Sydney, Olivia, Kylie, Josie, Kaylee Emma 2 & Ellie 2 (Camas/Vancouver, WA & Beaverton, OR)

- Invite, Banner & Logos: AndersRuff (Etsy)

- Mailing Stamps: PictureItPostage

- Custom Tissue Poms: PomLove (Portland, OR/ Etsy)

- Cake & mini-cupcakes: Truly Scrumptious (Camas, WA)

- Custom Birthday Shirt: Green Apple Boutique (Etsy)

- Crayon Party Favors: Red Elm Designs, N.Dakota (Etsy)

- Furniture Rentals: The Party Place (Portland, OR)

- Bounce House Rental: Parkrose Hardware (Vancouver, WA)

Thursday, September 9, 2010

Live Vaccine's are a No-No!

We are in back-to-school mode in the PacNW & the weather has cooperated (that's being generative). Smacking us in the face with rain & cool temperatures on the first day & continuing, as if to say, "What? You wanted to ease into fall??"
And September also brings a celebration for Charlotte who turns 5 this year! Age 5 is a vaccination year too and a reminder to ME that Charlotte, who is on an immune suppressed drug (methotrexate, the go-to drug for children with arthritis) cannot have live vaccinations.
What are live vaccinations?
Well a vaccine is:
a suspension of attenuated or killed microorganisms (viruses, bacteria, or rickettsiae), or of antigenic proteins derived from them, administered for prevention, amelioration, or treatment of infectious diseases.

one prepared from live microorganisms that have been attenuated but that retain their immunogenic properties.

So when you get the flu vaccine, you can get the shot or the nasal mist. The nasal mist is a live vaccine, the shot is not. We have to remind the pediatric's that every time. And as her parents, we too, cannot have the live vaccine of any sort, or if we do, we need to stay away from Charlotte for 24 hours. (same goes for sisters!)

Why does this matter for a child on immune suppressed drugs?
Bringing a live virus to a child with an immune suppressed body is like delivering the virus to them on a silver platter. "Here sweetie - here's the flu! Love you lots!" Can't do it.

Who knew right? But now we do & knowing is half the battle :) Happy Fall!