Sunday, August 31, 2008

We love our Tottie's Pretties Models!

Chelsea, Simone, Sophie Wei & even a brother (Chelsea's big brother Fuller) are such beautiful models! Thank you for sending me your pictures of your sweeties in their Tottie's Pretties!
This is Miss Chelsea - look at those gorgeous teeth coming in - beautiful smile! And her big brother Fuller can TOTALLY get away with the Beaver Pretty w/ his rebel shirt!
Simone added some more flair to her pretty! Go for it!! Gorgeous!
Sophie Wei - you're a doll!!
Simone!
It goes with everything!
Thank you pretty girls & rebel boy!
Tottie's Pretties are $10 & 50% goes to CARRA: Childhood Arthritis & Rheumatology Research Alliance, which is a network of 246 pediatric rheumatologists from across the U.S. and Canada. They have come together to collaborate and conduct clinical research to improve the lives of the 300,000 children suffering from the devastating effects of juvenile arthritis and other rheumatic diseases. Thank you for helping find the cure for our children.





Saturday, August 30, 2008

Save The Boobs!

The girls & I are practicing our endurance for the 3.3 miles in the RACE FOR THE CURE coming in September. We run on John's team. John is my friend from HS, who went to college w/ us, became best friends w/ Ryan & now our girls are best friends! John's work is to save boobs :) I love it & I appreciate his work! Watch his video on SAVING BOOBS!

Wednesday, August 27, 2008

Locks of Love

Big day today for Emma & Ellie! After swimming all summer & having me spend WAY too much time getting chlorine out & brushing the snarls out from that chlorine, they finally got to cut off the required 10 inches to donate to Locks of Love!

Ellie BEFORE.... the brave one to raise her hand & go first!
She cant look!!! we had to tie her hair off in 3's! (SO MUCH HAIR this one has /yoda)
Emma... 1 ponytail! Time for the wash!
David gives her rabbit ears! Love David - he's my guy at Wildroot Salon in Portland!

Oh my gosh you blonde bombshell of cuteness!
Emma has to touch it - "what's it feel like?" "get your hands off!!" :)
Emma's Turn!
"Oh my gosh I cant stop staring at you! Its so cute!"Shake it sister - swing that hair! All done, hop down!
2 Fantastic Girls! They learned about giving, sharing & did it cuz they wanted to!
I am proud of them!! They each picked out a new Tottie's Pretties to wear for their new 'do!

Sunday, August 24, 2008

August Remicade

Remicade is the medicine that Charlotte goes to the hospital to get to help control her the arthritis in her eyes (uveitis). Its given intravenously over a 4 hour block of time. We hang out in the Children's Day Treatment Center of the hospital with other children (& their families) who are getting their IV's (99% have cancer). This medicine is given every 4 weeks, once a month. So August '08 is done! We only have 20 left (per the recco of Dr. Stephen Foster to be on it for 2 years) before we head back to Boston to talk to Dr. Foster & talk weening to see how Charlotte's body holds on her own.

But that's REALLY putting the cart before the horse to talk about that! That's putting on our socks over our shoes isn't it?! Lets take one step at a time & get thru each month, because right now, that's about all I can think about.

August '08 was a hard infusion. It was about as bad as her first one way back in April. She was so upset to the point that she was sweaty, working her self up, and they couldn't get the bandage to stick over the IV, and it blew.
Charlotte's arm has war wounds for our August '08 Remicade day. It looks awful. And she's almost 3 (next month) so she will tell you that it happened at the hospital, and it hurt....
A few things I learned from this trip. Always make each hospital trip the same routine, sameness as much as possible helps with alleviating the acknowledgement of pain. We had several things go on this morning so that it wasn't the SAME, including me not being there in the AM, Daddy holding her (till i got there), another new nurse (I had a talk with them about this...) injecting the IV, etc.
By the end of the initial poke, two of us were in tears, 3 of us were blotchy & red and all 5 of us in the room were exhausted & glad it was over.
I don't believe the numbing cream is working so I might start taking that into my own hands as well (I have some spray...). We even talked about a port with Dr. Kingsbury but.... i only go down that road immediately after the initial poke & then for an hour till I have calmed down. i don't think it would be the way to go, but its still hard to watch the IV poke when we have to hold her down like a psych patient.
We also talked to him about the trauma the weekly shot is giving Charlotte (that we do at home. when we are at the hospital, they put it through her IV, so we get a week off). He suggested we change to giving it to her orally. I said, "But you said..." and he didn't even let me finish & said, "I know, I know but..." and we talked about the weight of the trauma versus the "best" way to give MTX. I am going to run this by Foster as well & then if all agree, do it AFTER the next eye exam so we don't have too many variables going on.

She's going on week two of NO steroid drops. We see the ophthalmologist in 1 week to see if the Remicade & MTX are holding the eyes on their own without the steroid drops.

Can you imagine my strength level the next day when "mean pool mom" dropped some insulting remarks to me about Charlotte not wanting to be in swim lessons (because of ANOTHER new teacher? Remember how I said she needs "sameness" - "consistency?")? I didn't care if Charlotte didn't want to participate in swim lessons. I know its not the water that Charlotte has issues with. Its being with people she doesn't know & isn't comfortable with. But "mean pool mom" had to really throw some doozies out there, with her back to me no less. I was looking for her "Michael Phelps" in the pool but didn't find him... So there MEAN POOL MOM! Back off! You have NO idea what my little girl goes through, NO IDEA. I don't think its too much to ask to have the same teeny bopper each day for lessons so that she feels comfortable with them, but I do NOT need to tell you that or prove anything to you. Just the judgements people say out loud or even in their head ... when you have NO idea!

Charlotte feels great & is happy so that helps the Momma's strength to increase & hope in humanity to rise. We dont have to worry about September Remicade day for another 3 weeks & 6 days! But I do need to plan Charlotte's birthday celebration for September! THREE here we come!!

Tuesday, August 19, 2008

Tottie's Pretties Fans

Some of my favorite models!
Ellie & her lost tooth in PINK! Little Chloe wore a stretchy to a wedding!
Miss Chelsea celebrated last day of chemo in her stretchy!
Charlotte loves the original pink on pink!
Ellie wore hers to school! Send me your picture!!

Tottie's Pretties Collections

Since I dont have my etsy site up & running quite yet (I am on target to do that AFTER the CARRA COSTUME BALL - more info on that later!), I thought I would share the collections of Tottie's Pretties headbands & if you are interested, let me know.

$10 headbands - wrapped in ribbon, adorned w/ flowers & gems or bows. Bows are clips that can be removed & used on their own (its a two-fer!). They are comfy - I have one!

1/2 of every headband purchased goes to CARRA - Childhood Arthritis & Rheumatology Research Alliance. Make that MORE than 1/2 because since we utilize Ryan's company's matching funds - they match 1/2 - so ALL of your $10 goes to support research (& I get to keep buying ribbon)!!!

Here's a few of my favorite collections:

It's Black or White:
1/2" or 1" headbands - these go with everything. 2 different zebra print are my fave!
The Classics:
These are the ones that Ralph Lauren would be proud to put in his collection! The chocolate browns, the light blues, the creams. The green flower is on a chocolate brown & is the only flower of its kind that I have.
Orange:
Its so bright & cheery - it makes any old navy or target halloween shirt POP & look like a million bucks! And these are great for Oregon State girls!

Wild Child:
Believe me, I have a few of these & they are fantastic & fun! Its hard to pick my favorite, but my newest ribbon is the "Lilly Pulitzer" green w/ pink whales!
Jingle Bells:
Red, Green or White - they are full of holiday cheer!
Specific colors needed? School uniforms or a special event? They make great birthday or Christmas gifts as well as lovely "Congrats on your 1st day of school" gift! Let me know how I can make something special for you & thank you for your interest in contributing to such a great cause!

For Peggy's Granddaughters

Personalized Tottie's Pretties for our friend's granddaughters. If you have specific colors that you are interested in, email me & I can send you pictures & then mail to you!


Hi Peggy!
I pulled together my blues & purples w/ the smaller flowers. Here are 3 blue. Lets call them:
Blue Bow, Tiffany & 1" blue.
Blue Bow is on 1/2" & Tiffany/1" blue are on 1" bands. Both are super comfy & keep the hair back well.
Purple Stripe is on 1/2", Purple 1" & blue/green plaid is on 1/2".


Let me know what you think - I will mail them to you, or give them to my mom so she can come down & have lunch with you :) Take care Peggy! Thank you so much!

$10 each & 1/2 goes to support Childhood Arthritis & Rheumatology Research Alliance. Here's the organization you are supporting: http://www.friendsofcarra.com/.

Please tell Kimie to mark her calendar for October 18th, we are having a costume ball benefit for CARRA & its for families celebrating this special time of year w/ age appropriate games/music/group dances & a great chance to wear that halloween costume for Mia & Ava! More information will be coming out in a few weeks, I will pass along to my mom!

Monday, August 18, 2008

The more we get together, the happier we'll be. Cuz your friends are my friends...

What's the rule for swim lessons when its thunder & lightening at 8am?! Its a GREAT excuse to stay home & do all that "stuff" you gotta do after being gone all weekend... OH & spending time with the new puppy (more tomorrow)!

This weekend we celebrated my mom's side of the family - her she is with her siblings. They are not standing in order but my mom is the 4th out 0f 5. My mom's the cutest one :) But I might be biased :)

On Saturday we drove up to Uncle Mike's house (white shirt) & hung out at the pool, played bocce ball & had BBQ. So much for doing my hair that day, guess I wasnt thinking :) Zach, Laura, Me & the girls in the water...
Allison, Cousin Steve, Uncle Mike, cousins Zach, Laura, Me & the girls waiting for the cannon ball tournament to begin! NO i didnt participate, duh :)

And this is Cathy's family: My brother Brad, wife Linda & our gang. Out at Aunt Susan's on Lake Tapps with Mount Rainier in the background. Totally gorgeous Sunday! The girls were fish, no matter the water type :)Zach goes with the girls on a tube. Oh man!!! They LOVED LOVED LOVED it! Cousin Zach was so awesome to go out with them on their first time, they will never forget it! And cousin Dean was so sweet to take them out in his boat! We had fun watching them!!
Uncle Mike explains to Charlotte why Emma keeps giving a thumbs up (she wants to go FASTER! uh oh!!)

Me, cousin Laura & Charlotte, loving the breeze on the boat. Yes, I am in a hat & a long sleeve hoody. NO SUN damage :) I am a bit anal... w/ my spf 50+ Aunt Susan was so sweet & loving on the girls, and shows Ellie "look at how fast you were going!" and now on to the puppy.... that's tomorrow :)