Sunday, September 28, 2008

Ellie & her personalities!

Colorful Kids- Our favorite photographer gets colorful!!!
Kids have a lot of different facets to their personalities---why not show them off in a one-of-a-kind piece of LBI portrait art? This is Ellie, our newest studio star. She "wore many hats", so to speak! Kids actually enjoy this type of session because it involves their input, dress-up and funny faces.

Ellie really loved this & we cant help but smile when we see it! Its really every face we have seen on our Ellster! I have talked about Lara before, but I cant say enough about her laid back style, the ease in which she has invited us into her studio & helped us feel comfortable & at home. We pick out our family portraits tomorrow & are so excited!!!

Wednesday, September 24, 2008

Oh it was fun!

We celebrated till we couldnt celebrate no more! Thank you friends for playing at the park with us today!! It was cold this September 24th, 2008.... but kids love the park in a snowstorm, so fun was had by all! Thank you Momma's :)

Part II - dinner w/ Marmee & Poppa

Fun Times to Be Three! (Ask Charlotte - she will tell you she's 4! Its true! oh boy its going to be a long year if we keep that assumption :) )! Thank you for the birthday wishes!!

Happy 3rd Birthday Charlotte!

Once upon a time...3 years ago....
AHHHHHH!!!!! What happened??? :)
OH wow Tottie :) You are one wild cyclone of personality! There are so many ways to describe you: courageous, fighter, vocal, kind, loving, shy, boisterous, funny, theatrical, entertainer, cuddler, strong .... We Love You!

Oh the things you have taught us this year....

We never new what Juvenile Rheumtoid Arthritis & uveitis did to children. Thank you for teaching us, so in turn we can be advocates & teach others... in hopes of eradicating this disease...
We never knew a child could be SO vocal in such LOUD ways... you even shock your sisters sometimes... and the puppy...
And we never knew that you could be so uber-sweet & kind as well. You know pain & when you see others crying or hurt, you are extremely empathetic & wish you could help. You are the puppy whisperer at our house, you speak to Casey in a language just you two understand & we are lucky when we get to witness those moments.

You are so many things! Like an actress...

A swimmer....

A Dancer!!!!!

But most of all - you are YOU! And we love all the amazing facets of YOU! A friend once told me something that reminds me so much of YOU, Charlotte:

"How delightfully rich is one's mind, when doused in hope & left overnight to seed."On your 3rd birthday, we wish you many riches & much hope! This 3rd year is going to be fun! You are AMAZING & we love you, love you, love you!


Sunday, September 21, 2008

September Remicade

September's Remicade Thursday went swimmingly smooth in comparison to one's in the past. The morning didn't start out normal - we had family pictures taken by the lovely Lara & then we realized that our timing was off between going to the hospital & getting Ellie to afternoon kinder. We have a "normal" day all planned out w/ friends, but this AM, because of the pictures, Ellie didnt go to AM school & we were thrown....

At 1130, exactly the time when we need to leave for the hospital, the doorbell rings and its my sweet friend Lisa, just dropping off cookies. JUST! In exchange she received Ellie for a lunch date. It wasnt exactly a fair trade, but she is an amazing angel who rang the doorbell at just the right time!!!! That was a divine thing that happened, thank you Lisa!!!!

Charlotte loved Miss Lisa's cookie & got to eat it before all the excitement started. YUMM!!! Let me explain the outfit.... The minute we got home from family pictures, Charlotte raced upstairs & stripped & put on her classic outfit of tutu & ballet shoes. She knew where she was going because we told her (mistake - not doing that again, it made for a little bit of a grumpy girl when she should of been smiling in front of the camera...), but she knew exactly what she wanted to wear!!! So the routine is - off to starbucks to get mom & dad loaded up & give Charlotte a hot cocoa. She fell asleep in the car on the way there (unusual...).
Our favorite injector - Nurse Priscilla - was back in town!!! YIPPEE!!! Charlotte was MUCH calmer with her, and so we chose not to use sedation (versed is what we were going to go w/) & Charlotte did do AMAZING! We also used some visualization while she was getting it done, talking calmly in her ear about her new dance class that she takes with "Miss Jessica" & I sang some of the songs that they sing. She calmed down & actually talked during the procedure about her dance class to Daddy & the nurses.... Ahhh!!! Thank you DANCE CLASS!!

The IV kept kinking so they figured putting her arm in a stint would help it to stop the kinking. The IV's are so teeny, flexible & easily distracted (wait, that's Charlotte....) so the stint did a great job of keeping it straight and FLOWING!
Our sweet friend Dawn came w/ lunch & conversation. Charlotte was congenial at 1st, then got grumpy tired, then perked back up.... Ah the roller coaster day of Remicade. But she ended up getting down, playing with toys & being GREAT! She fell BACK asleep on the way home (not normal) & had a great evening with Marmee while we headed off to 2nd grade curriculum night at the school.

I invite you & your family to join us or register to be there "in spirit!" CARRA Costume Ball: CARRA COSTUME BALL: October 18, 2008 * 630PM – 930PM * Camas, WA High School *
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! We are expecting 400-500 participants. Tickets will be available for purchase online & at the door for $25 a family. All proceeds will go directly to 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.

Many angels have given their time to encourage us & help make this event possible! Hearts of gold website artist Tracey at Black Dog Creative Design & photographer beauty Lara Blair shared with us their talents & their passion. THANK YOU! This will be a fun EVENING! Hope you can join us or "Be There In Spirit"!!

Wednesday, September 17, 2008

Tell your story, Tottie!

Tottie will be 3 next week & she's such a cyclone of personality that sometimes I forget how SMART she's getting at her age & how much she's absorbing & understanding.

She was getting a compliment of her Tottie's Pretty today at a store. The woman was nice & I felt that she would like to hear the full story of why I make them & where the money goes.

I was right. The woman was patient & listened with interest & she said, "I had no idea what rheumatoid arthritis did...."
I related the disease & its affects on Charlotte to a tin man & shared what we did to "fix it" (the joints). I then recited some of my lines from my "childrens book in waiting." Very simple explanations...She got it.

And so did Tottie.

"It's in my eyes," she said.

"Yes," I said, shaking my head in agreement. "Charlotte just told you the arthritis is also in her eyes."
The woman looked at Charlotte & in a stunned way said, "I just had no idea..."

I guess at age three, Charlotte might start telling her own story! I appreciate how she absorbs the information & is freely sharing it with a nice stranger!
Tomorrow is Remicade Day / September & then only 16 to go. Send her calming thoughts.... & we will keep it routine & hopefully will see our nurse friends that we love & appreciate so much!

Sunday, September 14, 2008

Casey Puppy - 3 months today!

We are having a September to remember here in the Pacific Northwest! I really wanted to play hooky on Friday w/ the girls but... when you are committed to kindergarten carpool... you know!

So we got our CARPE DIEM out today! We went to Cannon Beach - directly west of Portland.
We were exhausted from a long saturday in Corvallis - we took all the girls to the Oregon State game against Hawaii. It was SO much fun! The weather was great, the girls enjoyed the game... they are just a little bit older to enjoy actually watching football! Ryan & I had a great time with them! They just invited themselves back to another one this season for sure! (minus Charlotte :) of course, 3 is just too young to sit in the seats. she did great this time, but its because we didnt have all the season ticket holders at the game, there was space to move around!) The weather was insane today at the oregon coast. Perfect attire: a fleece & shorts! i was still cold even though it looks beautiful - its the oregon coast & the wind is WHIPPING! My hat couldnt even stay on, so my face is suffering a bit tonight (yes, the 85+ sunscreen was on, but you know "miss sensitive skin" here was fuhreaking out...)
ALL the girls (including Casey) loved running around!! That's not the only thing that ran around.... Look at Ryan's finger... see his ring?
OOPS! Proff that the puppy is still teething & about to take a chomp out of Emma :)
Well... soon after the bite out of Emma's leg, Ryan & the girls & pup all went running down the beach & they were helping Casey swim in the ocean. His hand was wet & with a flick of his hand w/ the leash... the ring went flying. We scoured the area for a good 30 minutes at least. And we even went back to the area on our way off the beach.... It was gone :(
Miss Jelly looks fabulous in her "pretty" - even in her swimsuit! The girl has style :)
Who is this girl? I have no idea, lately she's been looking so old to me! Tall, and such a gorgeous smile... she's getting older & sweeter by the day! These are some happy faces, they were sooo excited to be at the beach. I wondered about energy levels after a fun Saturday, but the beach is a special place so that extra adrenaline kicks in!
Told you it was windy! Casey couldnt keep her ears down!! :) haha!
Happy 3 month birthday sweet Casey!! She sure got lots of love & attention at the beach! Everyone LOVES a puppy! My favorite 4 legged friend we met today: Prince Andrew of Clackamas (Aka "andy") - a golden retriever! He was HANDSOME!

Some lucky fool will find Ryan's ring & I hope they appreciate what I had engraved in it 9 years ago when I was practicing my goofy romantic sayings (wink). Ah... a little sad yes, but ... lucky boy will get a new ring.... wait a SECOND! Is THAT HOW IT WORKS?!?!?! "Uh... honey? I can't seem to find....."

Monday, September 8, 2008

Good friends & supporters!

Our sweet friend & teacher, Mrs. McCarty has been a big supporter of us & our Tottie's Pretties (she wrote about it in the link)! Thank you for your post, your friendship & your love for us! Sweet Ellie - a 1st grader w/ a missing tooth, a gorgeous smile & eyes that melt you! We are pretty much in love w/ her little brother too :)

TNF-Blocker Drugs have risks... we know...

You hate to hear of things like this, but also, ignorance is not bliss. We must be aware that the drugs Charlotte is on, whilst they are doing their job that we need them to do, they also affect her body in a way that causes us to examine every sniffle & sneeze from her.

FDA: Manufacturers of TNF-Blocker Drugs Must Highlight Risk of Fungal Infections

To view the press release click here:

Story Highlights
- Enbrel, Remicade, Humira and Cimzia to get stronger warnings
- They work by suppressing the immune system, which leaves patients vulnerable
- Patients could develop a fungal infection which, if not treated, can be fatal
- The fungal infection, histoplasmosis, mimics the flu

Thursday, September 4, 2008

Stay CLEAR!!!

Great news for Charlotte at the latest ophthalmology appt! She's been off the steroid drops for 2 weeks (the 1st time since November '07) & this was the tell tale sign of if the MTX & Remicade are doing their job on their own.

The eyes are clear & the cocktail is working!! Yippee! We will see the ophthalmologist again in 4 weeks & continue to keep her healthy.

(which... welcome fall! she has the sniffles yesterday & today & is a little grumbly. bah humbug!)

From: Stephen Foster
Sent: Thursday, September 04, 2008 4:09 AM
To: Erika Cox

Keep up the good work.

Stephen Foster

Tuesday, September 2, 2008

I like to move it, move it!

Mark the calendars for family fun at the theatre coming in November! Looks good!!

School Rocks

Ah the sound of the bus roaring up to the end of our street was the sweetest sound I have ever heard!! "Goodbye my little chicklets... fly away little birdies! Go have fun & be kind & generous & learn lots! Because 2nd Grade ROCKS! And kindergarten ROCKS!"

2nd grade ROCKS!
Kindergarten ROCKS!

Hanging out at the bus stop with the neighbors! Big group today!! But we were missing on of the sweetest neighbors who went to Jr.High today! Cant wait to hear of those adventures (6th grade).
Today's lunch included a bagel w/ cream cheese, lemonade, fruit leather & 2 chocolate chip cookies! Yum! I just want to say YES - that backpack is going on its 3rd year (jantzen!) & the lunch box on its 2nd (lands end!). LOVE IT (especially since both are monogrammed) :)
Bye Bean! In her blue sweatshirt & cuffed jeans! :)
(Ellie is afternoon kinder, so she will come home on the bus w/ Emma!)