Sunday, October 26, 2008

I'm Easy Like Sunday Morning

That Title song tribute goes out to Melissa of Camas....

So easy like sunday morning huh!?

Well... sometimes I joke with the girls when they are being a little reckless & I tell them, "C'mon girls, lets chill it a bit, I dont have time to go to the ER today."

We must of had time today... and we did cuz I really thought we would make some fairy houses out in the backyard this afternoon. Its gorgeous & sunny here today.

But Ellie had different plans. I thought she was practicing headstands with Emma, and she is a little rocky on her balancing so when I heard her screaming, I wasnt very empathetic. the night before she wasnt taking my advice of balance your knees on your elbows before you go up. She was just trying to go straight up & falling all over the place & everyone!

So she is screaming & unattentive I ask, "what? what did you do?"

Her hand comes off of her eye & blood is squirting everywhere. OH LORDEEE....

PHONE, phone, where is the phone & why wasnt it put back on the cradle?!?!?! Cell phone!

"EMMA! CALL DADDY!"

Daddy had JUST left to go golfing....

But we caught him just down the road, so he whipped that "ultimate driving machine" around & came SPEEDING down our street (sorry neighbors).

Scooped Ellie up, put her in the car w/ her bloodied, wet washcloth over the bag of ice & we talked gameplan.

"Ask for a plastic surgeon. When its to the face, ask for a plastic surgeon." We debated which hospital to go to - the closest one, or our 2nd home, the childrens hospital in Portland. Opted for the 2nd home, figured they are bigger, would have better chance of having a plastic surgeon on call on a sunday morning.
So! 3 hours later = 3 stitches later. Put in on Sunday, she gets them out on Friday. I told Ryan, "For some reason, this is our 1st time with stitches for Ellie, but i have a feeling it wont be our last."
No more pictures!!!!
Numbing cream over the cut.... (cha! it didnt do much except allow us to hang out for another 30+ minutes!)
A step not documented: the 6 inch needle that went in around the cut w/ numbing "stuff", and Ellie cried & screamed at it going in (its why i know the cream didnt work!) & I couldnt look at the needle entering....
After the iodine scrub around the cut, flush it out to clean it up.... ran everywhere & was cold.
A little more cleaning. Yes, Daddy, those are sterile gloves you sell! l I did point out your "stuff" in the room, that helped her keep her mind off of things! A sterile "towel" that had to go over Ellie's face w/ a hole to separate the area being stitched. Ellie did NOT like this towel, I think it made her feel a little clausterphobic & out of control being covered like that. Whip, whip, whip - 3 stitches! very thin stuff.... Dr. Kelly was a beautiful, kind dr. & said, "keep her out of the sun for 1 year or it will leave a scar if the area gets burned. Wear big floppy hats, lots of sunscreen." All done! Nurse Stacey brought Ellie a red popscicle! Then it was off for a VERY late lunch at New Seasons.... and now.... its movie time on momma's bed waiting for Daddy to get home from golfing in this sunshine. So is NEXT sunday, "easy like sunday morning?!" :)

BTW - the coffee table is going to live on a farm, where it can have room to RUN & be with a nice family.... (or chopped into kindling....).

Thursday, October 23, 2008

Great Success!

Over 350 people dressed up in their costumes & attended the 1st annual CARRA Costume Ball held at the Camas High School.
Families dressed in unison as pirates, hippies & bugs while some parents left the costumes up to the children. But everyone had a great time dancing the night away & playing games while raising funds & awareness about childhood arthritis.
Each family ticket of $25 went straight to the Childhood Arthritis & Rheumatology Research Alliance for research & clinical trials to find a cause & cure of childhood arthritis.
Over 100 families attended raising over $6500 for the finding a cure for childhood arthritis.

Organizers Erika (Snow White) & Laura (Sandy from Grease), Camas mom’s who’s daughters have juvenile rheumatoid arthritis (arthritis affecting the mobility of the joints), felt that families had such a great time celebrating the season & mobility & the opporutnity for family fun, that they have already scheduled the date for 2009!
Save your costumes & mark your calendars for another family fun Costume Ball happening at the Camas High School on Saturday, October 17, 2009.

If you would like to be notified of next year’s event & how to buy tickets, send email to CARRAcostumeBall@gmail.com.
Do you have pictures of the evening? Please send to e3cox@hotmail.com!! We would love to use them for future publicity & next year!

Friday, October 17, 2008

CARRA Costume Ball on the local news

Forgive my home-taping of the show, but its not online yet & i wanted you to see the communication before & after!

5AM:


6AM:

Thursday, October 16, 2008

October '08 Remicade Day

I hear my hubby downstairs washing the dishes as I am recollecting today's remicade day for Charlotte. Happy Anniversary to us :) We had ice cream tonight with the girls & celebrated 9 years!!

Today's remicade was so nutty, i didnt even THINK about documenting with pictures as i have for every other monthly adventure. Ooops...

We started out with an early morning getting down to the tv station to film a segment that will air Friday morning (october 18th) & will be online after it airs early in the AM. I spent some hours the night before making sure my talking points were buttoned up, succinct, pertinent & practiced in the car on the way into downtown portland this AM. I wasnt sure how comfortable I felt being in front of the camera when i really enjoy my past life of the PR girl prepping OTHER people..... but i think it went ok & hope that it comes across well..... I was overly prepped and felt very underprepped at the same time. Did I say enough, did i say too much, were my facts straight, did I encourage excitement for the Ball???

Now my client, wouldnt take my PR advice. There was no smiling, she was classic Charlotte meeting a stranger, answering NO to every question. "Does she know she has arthritis?" "NO!" If you know & love Charlotte, it will make you laugh. If you dont know her....big sigh... I wonder how it will come across :) She's my little old lady in a 3 year old body. Dont mess with her in a dark alley, she will take you out :) :) :)

Is this what Charlotte looked like on TV today? you bet it was!!! Did EVERYONE Make a comment ALLLLLL day long from the restaurant, to nordstroms, to the hospital - of course they did!

Then a morning of breakfast & shopping before settling into the hospital. Breakfast at the Bijou where I went with my BFF 9 years ago that morning to eat breakfast before getting into my big cream poofy dress, meeting my sweetie, bawling my eyes out as the bagpipes played while i walked down the aisle, forgetting to kiss my dad out of nervousness & continue crying during my vows & ruining my makeup (cuz its what i do!).

Only 16 more remicades to go to fulfill our 2 year commitment (ha - its really not a COMMITMENT per say, but Dr. Foster's recommendation is 2 years).

So this Remicade day went like no other - because that's how they go - there is no cookie cutter day. We did the right arm and the IV went in like BUTTER!!!! Nurse Priscilla was amazing & she said that the right arm has a GREAT vein,we are going to continue using it till we hit scar tissue (ugh).

But then Charlotte wigged out. And I mean a complete out of body freakout. The iv was done, it was in "no more pokes" yet she was still wigging out. And the culprit: BENEDRYL. Kicking us, not letting the nurses put the stint & tape on, screaming, sweating, I thought she was going to pass out.

So we are going to forgo the benedryl for the next round, the Thanksgiving 08 round & see how she does..... on this day, she wigged, stopped, cuddled into Daddy & slept in his arms for 1.5 hours!

I appreciate our friends Dawn & Cindy for their camaraderie & support & LUNCH :) My dad surprised us too & came out & saw what this day was all about. He watched, asked a lot of questions as an ex-Army medic would & Ryan got to entertain him pointing out "my company owns that, we sell that & that & that...." oye vey! I have posted on here before about going into a hospital with Ryan.... :) :) :)

And this VERY full day of tv appearance, remicade, anniversary, Costume Ball.... is coming to a close. But let me get one more plug in about the Costume Ball before I say goodnight because its been my mission for several months now, & its my passion to DO something for Charlotte & this has been it....

The CARRA Costume Ball is almost upon us. I cant SAY in words how excited I am for this event & how its come together! I also cant speak highly enough about my co-director Laura, mom to 2 1/2 year old Addison (extended puaci jra) who's amazing organization, drive & dedication has made her a JOY to work with! We have already been talking about next year!! But SATURDAY first :) & then she & I will celebrate together with some spa time on Sunday. She is a Great Friend & great supporter, a great cheerleader & an amazing do'er! Thank You Laura!

The raffle is bountiful with amazing & FUN prizes!!! Our donors have been SOOO giving & kind!! And the dance... its going to be a blast! We have some girls coming from the local gymnastics/dance studio to perform in the middle for all the families - its just going to be so much fun! I look forward to meeting JRA families I talk to in email but haven't met, I am excited to see old friends from college, from work, that are coming that we never get to see often enough. This is a CELEBRATION night! Much like our wedding 9 years ago....

And you know what.... I just might cry!
Cuz its what i do :)
http://www.carracostumeball.com/ say gnight Gracie.... gnight!

Thursday, October 9, 2008

Shout out from Oregon!

I just got a lovely shout out from a new friend who took the totes of headbands to pick & choose & share with her friends! Her daughter is gorgeous & its so fun to see little girls in their Pretties & see what they choose as their favorites! I enjoy seeing their smiles! Tell them thank you - they are supporting other boys & girls with arthritis all while they look super cute :)

Get your cookie!


Kashi is giving away YUMMY COOKIES!!!

Why? Because our cookies are good and good for you. So you get whole-grain nutrition along with chocolatey, chewy satisfaction. And that's what we call a snack.
I betcha these girls would eat a Kashi Cookie!!! :)

Oregon Ballet Theatre - performing in the streets of Portland on a Thursday night!

Wednesday, October 8, 2008

Arthitis Prevention, Control & Cure Act

Advocates and Ambassadors,
Thank you for keeping up with the fast-paced world of politics. For the past few weeks as a member of the Arthritis Foundation’s Advocacy Network, you have been part of a movement which kept the Arthritis Prevention, Control & Cure Act (HR 1283) on the top page of many Members’ “To Do” list. Congratulations to you all! Your efforts led to the Arthritis Act passage in the House of Representatives on September 27, 2008!

The Arthritis Act’s journey continues to the Senate side of the Capitol. Although the House and Senate have both now recessed until after the November elections, Senate Majority Leader Reid has announced a “lame duck” Senate session starting the week of November 17. The Senate is planning to address a package of more than 150 public land bills, which have been stalled, and maybe a few other bills. We are working with key Senators to try and have the House-passed arthritis bill addressed during the lame duck session. It is an uphill battle, but we are continuing to do everything possible to get this bill through the Senate this year. We will keep you apprised of any developments as they occur and certainly will let you know how your advocacy efforts can help advance the bill.

All this hard work you have been doing to educate your Members of Congress has made a huge difference with this bill during the 110th Congress. Your important Congressional outreach was absolutely critical to our success, and we look forward to continuing this important journey with all of you.

Please take a moment to thank your Representative if he or she was a cosponsor and to let them know the Arthritis Act passed the House in September. If your Representative was not a cosponsor, please take a moment to let him/her know that the Arthritis Act passed. Your story is important to your Representative; an e-mail is waiting for you to personalize.

Tuesday, October 7, 2008

Press Release


FOR IMMEDIATE RELEASE Contact: Erika e3cox@hotmail.com


FIVE CAMAS C.A.R.R.A. GIRLS HAVE A “BALL”
Small Town Supports CARRA: Childhood Arthritis & Rheumatology Research Alliance With a Costume Ball

Camas, WA – This is not too much like the story of Cinderella, but on Saturday, October 18th from 6:30-9:30, families will come together in costume to dance for a good cause and happy ending.

The 1st Annual CARRA Ball will take place at the Camas High School Auditorium, 26900 SE 15th Street. Tickets and directions are available online at http://www.carracostumeball.com/. Tickets are $25 per family. All proceeds will go directly to CARRA.

The organizers of this event are mothers of two of the Camas five girls with Childhood Arthritis, Laura XX and Erika X.

“We want to celebrate family, mobility and awareness, while taking advantage of the season,” said Erika. “We figure this is a great way to bring families together and raise money for the organization fighting to cure our daughters.”

“Besides,” adds Laura, “the reality is that when we are all in costumes, no one knows who is sick!”

This will be a night of great memories for everyone and family interaction from start to finish. Costumes are encouraged. DJ Denmark from RadioParties will provide wholesome and age appropriate music, group dance and games. There will be a raffle with items such as 2 nights at the beach, an American Girl Doll & much more. A hot dog cart will be on hand with food as well as a free espresso cart for the parents.

CARRA is an organization of Pediatric Rheumatologists from across the U.S. and Canada, working collaboratively to address critical research issues. They have come together to share treatment protocols and outcomes, and to conduct high quality clinical studies. Through collaboration and research, the CARRA organization will find solutions to the many questions about childhood rheumatic disease, which may ultimately lead to a cure.

Arthritis and other rheumatic diseases affect an estimated 300,000 children in the U.S. Many of these children live with chronic pain and take daily medication in the hope of controlling their illnesses. CARRA doctors are committed to finding the cause and cure for rheumatic diseases in children.


For more information or an interview, contact Erika XX at e3cox@hotmail.com or 123-456-7890.
###
ATTACHED: PHOTOS, LINKS and TESTIMONAILS
PHOTOS
Photo 1: Girls in Costume for CARRA Costume Ball – 3 Camas girls struggling with the daily pain of arthritis
Photo Identification: Claire x, Charlotte xx, Addison xxx
Photo Credit: Lara Blair Images

Photo 2: CARRA Costume Ball – Charlotte x in costume. Charlotte recently visited a Dr. @ Harvard for her battle with the arthritis in her eyes.
Photo Identification: Charlotte x, age 3
Photo Credit: Lara Blair Images

LINKS
- http://www.carracostumeball.com/
- http://www.friendsofcarra.com/
- http://www.carragroup.org/
- http://www.arthritis.org/

TESTIMONIALS
Charlotte x (age 3) started limping on her 2nd birthday.

“We thought she had a sliver in her heal but there was no sliver & then one day she woke up with her knee swollen & refused to walk at all. Her pediatrician immediately drew blood & took x-rays,” recalls mom Erika x.

Charlotte was diagnosed with pauci-articular juvenile rheumatoid arthritis by Dr. Daniel Kingsbury, a pediatric rheumatologist at Emanuel Hospital.

“Dr. Kingsbury was able to drain Charlotte’s inflamed joints & give them a shot of cortisone. She was mobile again,” said Erika.

The arthritis that went to Charlotte’s eyes was harder to control. After 10 months of hourly steroid drops & several steroid IV pulses, the found medical cocktail that finally controlled the inflammation in her eyes were Methotrexate (a shot given at home) & monthly infusions of Remicade. Luckily for Charlotte, no damage has been done to her eyes during this past year.

Addison xxx (age 2 1/2) has a similar story with her joints, but at an even earlier age.

“At 18 months, it was hard to identify if Addison was still learning how to walk or if she indeed had a limp,” remembers mom Laura xxx.

“Addison’s arthritis affected the tendons around the bones, but treated just the same as a joint.” Laura said, “After her initial joint injections in the beginning of the year, we thought we were clear. But last month she had a flare up in fingers, toes & elbow. Now we feel that we are always on alert.”

Now both girls, ages 3 & 2 ½ are involved with their moms to do something to help the thousands of other children that live with the pain of arthritis. They have created a family fun event called the “CARRA Costume Ball” supporting Friends of CARRA.

Charlotte & Addison aren’t alone. There are 300,000 children in the US with arthritis, 5 of them, including Charlotte & Addison, live in Camas.



- end -


Sunday, October 5, 2008

Fast Forward a few seasons...

I just got some pictures from my cousin when she was visiting us in the spring. I hardly recognize Charlotte & had to share with you the dramatic difference. In the spring, Charlotte was on Prednisolone (steroid) & had 3 Methylpred pulses (another steroid). I learned quickly about the "steroid affect" in the face - you can clearly see it! But it also affected the color of her hair and the amount of hair. She was fuzzy all over (especially her back) and her hair really darkened.

So this is my daughter on steroids.
This is my daughter off of steroids (I cant say this is her NOT on drugs :) we are still on Methotrexate & Remicade - drugs that do not show visible signs of side affects):

Drugs are good :) They can just do freaky things....

Saturday, October 4, 2008

My Pretties!




These are my precious Pretties! They love to wear their Tottie's Pretties & I love how they incorporate them with everything, like a Cinderella dress, a Nike basketball shirt, and eating toast! :)
The pink on pink was my 1st one, and its the one Charlotte ALWAYS picks. Its looking a little ragged these days, and I have tried to make a new one that looks just like it - but its like a blanky! Instead of a smell, it must have a feel that she loves.... who knows :) But she loves it!
1/2 of the $ made on Tottie's Pretties goes to FRIENDS of CARRA. We still have a few more months of 2008, but so far I am so pleased with how much we have been able to donate with our Pretties!
Do you need one for Halloween? Christmas? Let me know your color choices & I would love to help you! New Pretties are being made EVERY DAY, there are rarely duplicates, they are all unique!
THANK YOU :)

Thursday, October 2, 2008

CARRA Costume Ball

BE THERE! Or BE THERE in SPIRIT!!!
In the U.S. 300,00 children have arthritis....

But no one knows WHO when we all dress up!
October 18, 2008 * 630PM – 930PM * Camas, WA High School * 26900 SE 15th St
This will be a night of great memories for everyone with family interaction from start to finish. Come in costume as a DJ provides wholesome and age appropriate music, group dance and games.

Food will be available & so will the opportunity to win raffle items from community sponsors! Tickets will be available for purchase online & at the door for $25 a family (purchase online & you get 5 free raffle tickets). Each family goes home with a fabulous swag bag!

All proceeds will go directly to Friends of CARRA.

WHAT IS CARRA: CARRA is the Childhood Arthritis & Rheumatology Alliance & is an organization made up of pediatric rheumatologists across the US and Canada. They are committed to improving the quality of life for all children suffering from rheumatic diseases, such as juvenile arthritis, lupus and dermatomyositis. Over 300,000 children in the U.S. are suffering from arthritis or some other form of rheumatic disease.

Hope to see you there!!!

BOO!!!

Wednesday, October 1, 2008

Clear Days

Weather-wise: We are ending our clear & gorgeous days here in the Pacific NW. Tomorrow the rain comes in & by Friday, a monsoon will be delivering 1/2 an inch. Sucha bummer to be happening on homecoming weekend for the HS, as well as "Walk the Night" for the Leukemia/Lymphoma society. :( We might send in the donation & call it "movie night" for the family....
With the sun, the flowers have had rebirths! My lavendar is shooting off new flowers... my wildflowers keep blooming. It's eerie, but gorgeous!!!
Orange poppies are my favorite :) I would have a lawn full of them if I could. But then how do you work on potty training a dog w/ a yard full of Poppies? PS - she's doing FANTASTIC now, it only took a month in our home.... UGH :) but she's getting it now!!! We are going on a week w/ no accidents! Yay Casey! & Puppy kindergarten is starting next week!Eye-Wise: Charlotte went in for her 4 weeks & remains CLEAR! YAY :) Another round of remicade/another 4 weeks till the next appt!
Family-Wise: We had a great time last weekend at cousin Kasen's wedding (Technically 1st cousin once removed :))! His mom, my cousin Debbie looked AMAZING, she's just gorgeous! This is Groom Kasen (oldest).
Kyle (youngest) w/ mom (cousin Debbie). No pictures of middle Chris?! He was making the toast!!! :)And all of her boys, especially the groom, were all happy, handsome & super sweet! Super Handsome!! Did I mention handsome? And their girlfriends were very forgiving of the little girl cousins who wanted to dance with them!!

And once-in-awhile, I get out of my school uniform (workout clothes by Lucy) & get to play with makeup & accessories :) Just... once-in-awhile. Everyone looked nice that night!!! Dont you love it when we can get Tottie to smile on cue? (not!)
Marmee blowing bubbles with the girls! Marmee is great-aunt to groom Kasen!