Tuesday, April 21, 2009

Acceptable vs. Recommended

Interpreting words of an email can be tricky. And all week I have been noodling an email response regarding Charlotte's path with her medications.

I had sent an email to Dr. Stephen Foster in Cambridge Mass who we saw last spring for Charlotte's uveitis & the email asked him his opinion on our pediatric rheumatologists recommendation of pushing out our intervals of Remicade from our current "every 4 weeks" to then every 5 (for four doses) then to 6 weeks. Our ped. rheumatologist wants to start stretching intervals to see if the medication is working & feels its the "next logical step."

Dr. Foster's response was "If she's been off of steroids for 6 months without a flare in her eyes, its acceptable to stretch intervals."

So for 4 days I have been sitting on that sentence, noodling, trying to interpret... and finally just sent him an email tonight asking him....

"You say its acceptable, but do you RECOMMEND it?!"
The unfortunate part of not being in the same location as the specialists is to be in front of them, having that one on one face time to see body language, probe conversation further & discuss next steps more often.

I am so appreciative that Dr. Foster is accessible to us by email, and I always remind him of his patient: when we visited him, her current medications & a brief little timeline so he can hopefully have a quick synopsis to jog his memory.

Acceptable and/or recommended? An answer will come tomorrow...
Hanging out at the hospital for Remicade treatments takes about 1/2 the day - over 4 hours. We pack toys, food & the pillow because screaming does finally poop one out. Charlotte has been doing these treatments since April 2008. Its doing its job of keeping the inflammation in her eyes, uveitis, at bay. Children with JRA proactively see the opthamologist because uveitis can only be detected through a slit lamp. The eyes are another pocket of fluid like the joints, for cells to congregate & cause problems like rheumatoid arthritis does to the joints.

Friday, April 17, 2009

Perfect Baby Gift

There seems to be a new wave of babies coming around in my world. So I thought I would take this opportunity to share some of my favorite sites for shopping for the primo baby gift!

http://www.mommieswithstyle.com/mtblog/
http://www.tottrendsweekly.com/
http://www.momsfavoritestuff.com/index.php
http://www.coolmompicks.com/
http://www.dimplesanddandelions.com/index.asp
http://www.uncommonlycute.com/
http://www.warmbelly.com/index.html
http://www.bambinibliss.com/

This is one of my babies :) Now a wild, sporty, smart & always happy kindergartener!

Tuesday, April 14, 2009

Getting Rid of the Corn Syrup

Since Charlotte's diagnosis of juvenile rheumatoid arthritis, we learned from a nutritionalist on what highly inflammatory foods were & how to avoid them. We've changed our diet to eat closer to the source, eat more alive foods & have a rainbow of colors (rich in antioxidants) on our plates.One thing we have successfully cut from our diet is corn syrup. Its in EVERYTHING so I have learned to be a label reader (& teaching the hubby to do the same when he runs to the store "I had no idea it was in bread!").

But when baking, I have learned to replace corn syrup with Brown Rice Syrup (found at whole foods). Havent been able to taste a difference (especially in caramel corn & praline toppings for the french toast).
But now I have that icky Karo Corn Syrup still in my pantry. Here's what I plan on doing with it: Make homemade bubbles !! Its almost sunny/warm/outdoor season, I love this new site that has lots of ideas & activities for the kids! But the homemade bubbles & finding things around the house to use as wands - sounds like a fun time! See you out on the driveway!

Wednesday, April 8, 2009

Totties Pretties Headbands make the OREGONIAN newspaper!

How fantastic! Wonderful press about the love that is behind Totties Pretties headbands!


Traveling bin of adoreable headbands for a cause in Wilsonville this week
Posted by Kimberly Nelson, community blogger April 07, 2009 20:26PM
Categories: Kids and Family Fun

Bin of Tottie's Pretties headbands for a cause in Wilsonville this week only

A big bin of traveling headbands has made its way to Wilsonville this week. Much like the "Traveling Pants," good things happen to those that wear them.

Why - because these handmade headbands adorned with flowers, ribbons and gems are not only beautiful - they also support a good cause.

Tottie's Pretties Headbands are made by Erika Cox of Camas, Washington, who has three daughters that wear them every day. Her youngest daughter, 3 year old Charlotte (they call her Tottie) was diagnosed with rheumatoid arthritis when she turned 2. She started limping and then woke up one morning with a swollen knee, according to Cox. "After her diagnosis and draining and cortisone injections to both knees, a wrist and an ankle, she was a new girl with mobility!" said Cox. "But it's been the uveitis that has been her biggest battle. She was immediately diagnosed with severe uveitis (arthritis in the eyes) in both eyes from the get-go. She's tried many medical options including taking steroid eye drops every hour for months. She has seen specialists and is finally on a medical cocktail that has her joints & her eyes under control."

The story behind the headband or "Pretties" is a story of education. Once Cox noticed that friends loved the headbands she was making her daughters she saw an opportunity to share about Charlotte's disease and use her Pretties as a continual fundraiser for a group of pediatric rheumatologists in the US and Canada who are working to find the cause and a cure for childhood arthritis: CARRA (Childhood Arthritis & Rheumatology Research Alliance).

Tottie's Pretties are ribbon wrapped headbands adorned with flowers and gems or perfect boutique bows. For every purchase of a Tottie's Pretties headband, Cox donates funds to find a cause and cure for Childhood Arthritis! In 2008, Tottie's Pretties donated $1500 to CARRA. In 2009, the goal is to double that amount to support CARRA as well as The Ocular Immunology and Uveitis Foundation which supports children with arthritis in their eyes, according to Cox.
Her bands can be found on Etsy.com but she also has a traveling bin that makes its way around the NW. This week we have the bin at a home here in Wilsonville and I have already been over twice picking out gorgeous headbands for my girls. They are way too cute to resist.

If you would like to pick one up for your Easter Basket or the little girl on your life call or e-mail local mom, Stephanie Wettstein - who has the bin this week only.503-582-9858 - mailto:stephaniew@mckenzieworldwide.com

You can also find them online at http://www.tottiespretties.etsy.com/

Sunday, April 5, 2009

Spring Break OH NINER!

We are on our last day of spring break & the sun is finally shining but its windy & a little cold. 2 girls are braving it to ride bikes, the littlest angel is still in the playroom playing ponies by herself :) They have done a fabulous job playing together this week & I enjoy "vacations" to allow them to practice loving each other! It does take practice....

The entire family went to Charlotte's Remicade day this week & I am so glad they ALL got to experience it (first time for big sister Emma-2nd grade). It went smoothly, fast & so well that I am revamping my future visits to emulate this one of calm (no more Ryan, no more friends, just 1:1 & bringing just a few things that she & i can do together (or Ryan), keeping it quiet & calm seemed to make the chemo treatment go faster & still left us all with energy to have the rest of the day).
We hit BLUEPLATE for the 2nd time during spring break after the hospital to celebrate. We have discovered a favorite - only open for lunch 11-5 Mon-Fri. And I had the Thursday special of BBQ pulled pork & chatted with the owner/chef about his recipe & the ingredients. I tried to replicate because it was soooo yummy.... He has a special oven, but he helped me figure out the deets for doing it in the crockpot:

Erika's Recipe for BLUEPLATE BBQ PORK
1. Crockpot
2. Big ole Pork butt or shoulder roast (I used a 3-5 lb one / I prefer bone-in, it's more flavorful)
3. Fill Crockpot w/ 2 beers, 1 can of tomatoes, 1 can of tomato sauce
4. Make a rub of:
* 1 cup of brown sugar
* 2 t. anise
* 2 t. allspice
* 1 T. cinnamon
* 1 t. black pepper
5. Rub the pork in this mixture, set it in the crockpot w/ its beer & tomato friends. If you still see pork, put some more rub on the top of it as a little layer of protection!

I let this cook for 18 hours on low (I started at 7pm & let it go overnight).

I took the pork out, broke it up in a separate dish & then put all the goods from the crockpot into a saucepan on medium & let it reduce. To help it thicken up, I put the immersion blender in it & added:
* 1t. salt
* 1/2 cup brown sugar
* 1/4 t. allspice, cinnamon, anise (each)

This sauce reduced for about 30 minutes & then i poured it over the pork & WHA LA. I immediately froze so we could take it to Sunriver this week & share with friends so I will let you know what they say. But the BLUEPLATE owner said that he has worked on this recipe from the Jamaican restaurants he has eaten at, he likes the sweet on the pork & then he said to me, "Really, its pork butt, how can you go wrong!?"
On Friday, we headed to the coast with our friends - took them to TILLAMOOK CHEESE FACTORY which is celebrating its 100th anniversary of making amazing cheese. If you live in the Pacific NW & haven't been, its one of those institutions that you have to visit once (its completely out of the way if you are headed to the coast but worth it for the kids & free samples of products you haven't seen in the stores: ie vintage white cheddar w/ garlic).

That's cheese down there on the conveyor belts. Its all completely glassed around the warehouse for people to take self-guided tours & watch the 2 shifts of workers package the cheese.
We went with our friends: The Henry girls who were newbies, so it was fun to show them! We loaded up on goodies to bring home & then headed up the coast highway to Cannon Beach for (get your stopwatch out) I am going to say just under one hour. It was FUHREEZING!


This was the only little girl who DIDN'T get in the water.... (smart!)

See all those little piggy toes in the sand - they went numb in about 30 minutes!! Ah the beautiful Oregon Coast :) Ellie, Caroline, Emma & Leigh all got their jeans wet & we had the air blasting over 80 in the car on the way home.

Before leaving, Ellie asked, "If its so cold, why are we going?!" And I pulled out the starving children response: "Because we CAN Ellie! Do you know there are some children, in say Omaha Nebraska, who have never SEEN the ocean?!" gasp.... :)

Happy Spring!!