Thursday, July 31, 2008

Et Tu Diane Von Furstenberg?

It's Fabulous! I might start sporting the look around town... Tottie's Pretties spiffy enough for the mom's too!! I mean if Diane Von Furstenberg can put it in her cruise collection, I can wear one to my local pool. Its PRACTICALLY the same thing :) :) :)

Tottie's Pretties or J.Crew?!

Someone at J.Crew must of seen a Tottie's Pretties & found inspiration because this is what they are selling for $26.50 & got coverage in the NYTimes Magazine:

July 30th, 2008 12:18 PM
The High Low J.Crew headband, $26.50
By Courtney A. Weinblatt

Good style mixes high-ticket items with brilliant affordable gets. In this column, T’s fashion team finds the cheap and the chic.

What: Headband with fabric flower and bow (style #98114)

How much: $26.50 at J.Crew retail locations

Who: Courtney Weinblatt, T Magazine’s Fashion Assistant

As a general rule, hair accessories with bows scare me. They are a painful reminder of the style mistakes I made growing up in Boston, the capital of prep, where toile is not just for upholstery but a major fashion statement. So I was surprised to find myself gravitating toward this headband from J.Crew. It’s the perfect weapon to combat summer frizz, and, while it does have a bow (gulp!), it’s anything but preppie.


With its beige flower made from multiple layers of chiffon circles, stacked on top of a clean loop of black grosgrain, the headband is decidedly more Audrey Hepburn than Bunny McDougal. In fact, just this morning a colleague asked me if it was Chanel or Lanvin. It was enough to make me forget I ever liked madras.

Read previous columns of The High Low here.
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And a Tottie's Pretties @ $10 - much more affordable & has good intentions! Thank you to the young models around town - you inspire me & look oh so adorable!

Friday, July 25, 2008

Just a walk in the park...

What does that mean exactly, JUST a walk in the park? Such a weird saying, isn't it? How could a walk in the park be JUST anything? I bet its different every time, with different experiences, using different senses @ different times of day @ different times of the year ...

Well our Remicade days at the hospital are like that too. Its "just a walk in the park" because its different every single time. The only thing that's the same is starting the morning off in a flurry, trying to keep clothes on Charlotte, because she loves to dress herself in a myriad of tutu's or swimsuits. But! Got's to look cute for the hospital Charlotte!

And why is that? Because when your attitude is stronger than your cuteness, you have to rely a little more on the cuteness to forgive for the attitude: get a big bow in the hair, have a cute dress on (PS by the time I got the camera out, the big bow was pulled out -she wanted me to "smell my stinky feet" - sweet charlotte! Nice! Where'd you learn that from Daddy?!?!).
But we always hope a little cuteness will allow the nurses to forgive you for yelling at them and screaming at the top of your lungs. That's always my hope I guess... I mean, Charlotte's screaming has really stepped up a notch... she's excellent at it! oye vey... REALLY excellent, even nurse Tricia said, "wow, i should have put in my ear plugs." ya sorry about that....

SO! I wonder if our monthly Remicade days at the hospital will ever get any easier? I was always hoping they would be like putting on your skates & just hitting the ice & coasting to the other side & be done. But.... maybe someday?
Its called "She's TWO!" and the other hard part is they give her benedryl to be proactive in case of any reactions. But benedryl just makes her sleepy & groggy & THAT makes her grumpy & have attitude!

She was sleepy today but was still happy to see our friend Miss Cindy & her son Paul when they brought us lunch (yes, we are so appreciative & lucky to have such amazing friends!! We feel it!!).

This is our view every time in our room - see our little chemo stand & follow the tube...it goes down and on the floor & up & hides in her little leg warmer. She camps out on the couch in a slouch & eats her PB & J & chocolate milk & watches a movie (or 3)....

For the JRA Families - its 200 MG of Remicade & they went faster today since its our 6th dosage. 20/40/80. Yet it was still 6 hours from start to finish for us (including driving time) which makes for a day, quite a day once month.
She was soooo tired of copping such an attitude and the screaming & the "NO" and the "I DONT WANT TO" that she sacked out the minute we got into the car & she even TRANSFERRED into the house to sleep 1.5 hours more until we woke her up to go to dinner! Where she didnt want to eat at all, she just wanted to be goofy & even I couldnt help but laugh... and laugh so hard I was crying telling the other girls to stop encouraging her because "ITS NOT FUNNY" as I wiped away the tears. Chalk it up to "remicade day."
She had a long day too. And 6 hours is a long day all of us, and yet I still bring 3 magazines + 1 book & never get through ONE! Hmmmmm..... i need to get smarter about my packing, we seem to bring it all in because we never know what to bring... but I will work on the "hospital bag." Is there an organizing site with tips for that?!? :)

Saturday will be a blast as I am going to go w/ my parents & friends to a BARN SALE! YEE HAW :) i am excited to find something spectacular with all these amazing vendors who have taken THINGS & made them beautiful!! AND!!! I am going to be a judge in a baking contest (yum) they are holding, lucky me!!! Yes, i saw the request for help & I couldnt resist! You know if there's anyone who knows a good brownie or lemon curd tartlet, its me! I hope the boys that own the barn are as wonderful as they sound on their blog because after spending all day at their home on saturday, I might have some new friends!

Thursday, July 17, 2008

Show me your Tae-Bo!

Time for Advococy! Will you help?

I can make headbands till the cows come home, but it wont bring in the kind of money that the government can fund for research & support in the Arthritis Prevention, Control & Cure Act. It brings in the big bucks & that's what Arthritis needs. I have said several times I would like to take this arthritis into a back alley & show it my tae-bo moves. This is the way to do it - by getting this act passed! My senators are on board & they will get my vote ("your hired!") when they need it. But its bigger than them...

Time is Running Out -- WE NEED YOU TO TAKE ACTION

More Info

Contact Congress Now

Congress has only 21 Congressional working days left to pass the Arthritis Act before they adjourn for the year. It is absolutely critical that you let the House Energy and Commerce Committee know that action on the Arthritis Prevention, Control, and Cure Act (H.R. 1283) must happen now!



We need YOU to contact Chairman Dingell (D-MI) and Ranking Member Barton (R-TX) NOW and request the Arthritis Act be marked up before July 31 when Congress leaves Washington DC. Despite the overwhelming support of 237 bi-partisan House Members of Congress, if the Act doesn't move now, it most likely will die in Committee.



Please forward this message to other friends and family members – we need thousands of messages to flood into the Committee offices so that it is understood we want action NOW!
Click here to contact the Committee directly on their website – you will be asked to fill in the Committee web form and to write comments. Please fill in your name and address on the web form, but phone number and email address are NOT required.





http://energycommerce.house.gov/membios/contact_form.shtml



The text below may be cut and pasted into the comment section of the web form and you can add a few sentences of your own story and why you care if you would like.



Dear Chairman Dingell and Ranking Member Barton:
Please schedule an Energy and Commerce Committee markup of the Arthritis Prevention, Control, and Cure Act (H.R. 1283) before the August district work period.




This bill enjoys broad bi-partisan support with 237 House cosponsors, including 37 bi-partisan cosponsors on the Energy and Commerce Committee.



This bill will greatly help the current 46 million adults and 300,000 children with arthritis and to address the expected 21 million more adults with arthritis by 2030.



A majority of Congress agrees that as a nation we must address the growing public health crisis in arthritis. It is time to markup H.R. 1283 and help make the pain of arthritis history.

Sunday, July 13, 2008

2 Thumbs WAY up for Kitt Kittredge

We saw the movie "KITT KITTREDGE: AN AMERICAN GIRL" last night with our friend Phoebe & Marmee. It was fantastic, what a great message for girls & what a relative time in history to learn about (with our current recession). Anywhoo - Kitt's full of spunk, I liked her! And what a great movie to have in the theater - such a great oppty to have a "theatre" night with the girls with such a grea movie!!! Thanks Hollywood :) Now i am going to ask for Kitt the doll for Christmas from Santa :) :)

Saturday, July 12, 2008

Great Lab Results

Great lab results for Charlotte, liver looks back to normal, all levels are wheree they needed to be so we jumped back on the Methotrexate wagon last night & then will do labs again at the next Remicade in a few weeks.
Just shows what a nasty virus can do to a little body whos' already fighting something else.
So glad she's back to "normal" (its all relative right?!) & we get to continue on our 2 year cocktail of MTX (weekly) & Remicade (monthly) to fight this uveitis!!

Friday, July 11, 2008

Tottie's Pretties!!

Tottie's Pretties are being seen around town & its so much fun to see these cutey girls with these fun headbands! They are even traveling (the bands, not the girls :)) to Seattle & Central Oregon for 2 little girls who are both turning 4! Happy Birthday Riley & Gracie!New color combo's are being made up all the time, I have new ribbon coming next week that I am especially excited for - including navy blue with bright red cherries! Fun!
We are not even at the end of the month & 14 families have purchased a Tottie's Pretties & contributed to CARRA! Headbands are $10 & 50% goes to CARRA (Childhood Arthritis & Rheumatology Research Alliance) who works to find a cause & a cure for the children with arthritis!

If you know a little girl who would like one of these, just let me know 1/2" or 1" band, color loves, big flower or small flower, flashy & fun or conservative (we live on both sides of that fence!) & I can help pick something out for you w/ my fashionista (below) who LOVES making color choices (& she's pretty fantastic at it!) :)

Thank you for helping us all make a difference & raise funds for a group near & dear to us!!! YAY FOR CARRA!!! CARRA's mission is to prevent, treat and cure rheumatic diseases in children and adolescents through fostering, facilitating and conducting high quality research. We are all for that!! Thank you friends :) Love you!

Thursday, July 10, 2008

Holy Cow

I will post the video later & you will hear Emma say over & over, "Holy Cow" as she is working hard on getting out an incisor! Ellie doesnt have any lose teeth yet, but she'd like to show them to you. And if you ask Charlotte, she will tell you all her teeth are coming out...and soon! :)

Tuesday, July 8, 2008

Good times...

Great news for Charlotte today. The June virus that wreaked havoc on Charlotte's body & caused a flare in her eyes (even though she's on remicade & methotrexate for the uveitis), has FINALLY left! Charlotte's appetite is back & she looks healthier. Her personality is back & I love this age of 2.5 - 3 (her birthday is in September) because she is talking like a little lady & holds some pretty great conversations & is a great story teller (she reminds me a lot of Emma with her facial expressions & her integration of dancing into her stories!).

Today's appointment with her pediatric ophthalmologist was another thumbs up of recovery. The flare is gone - we are back down to ZERO trace in each eye. So a mutual decision was made to lower the pred forte drops to 2x a day till we see her in 3 weeks!


We also made a quick visit to the pediatricians for a blood draw & urine sample. At the last remicade treatment, her liver wasnt looking good, so we stopped the methotrexate for a week & will wait for the results of today's labs to see if we skip another week of mtx.


The Momma Gut says: The virus whacked her whole system out. For two weeks she was not "right" for what "right" is for Charlotte. The eyes flared, the liver levels arent good. Now CHECK, eyes are back under control, so its time for CHECK, the liver to be under control & for us to stay on our current medical cocktail of weekly MTX & monthly remicade & continue to taper & be finally RID of the Pred Forte. And seeing the pediatric ophthalmologist less would be nice too :)