Wednesday, December 23, 2009
Saturday, December 5, 2009
Wednesday, November 18, 2009
Where do i find the time? I was asked that.... well how do you NOT make time to educate how to fuel your body & take care of it? If I can go shopping & get my hair done, I am taking care of myself & find time to do that.
Sunday, October 25, 2009
I got a call from the Washington State Health Dept on this week & we were on the phone for an hour going over specifics of where I shop, what she ate from September 24th - October 1st. My brain HURT from trying to remember. I do keep dinners logged in my calendar, but lunches... hoping I answered correctly.
And the reason they wanted so many details is that Charlotte's e.coli 0157.H7 matches the genotype that a grouping in our county presented in September. Charlotte fits that outbreak. So now they are trying to find the commonality in order to find the needle in the haystack.
We went in for a poop test on Wednesday & Thursday & by Friday the Dr. called & said, "its positive... again." I was soooooo frustrated!!! Our Dr. is going to consult with the other Ped's in his group to ask, "at this stage, can we give her an antibiotic?"
An antibiotic at the beginning would have done more damage than good. As I understand it, an anti-biotic can actually help promote the bad bacteria growth & have it grow rapidly, thus causing more damage.
The Dr. said that people can live with this in their bodies for a long time. Acutally people can be walking around with it & not even know it. And he's not sure about the antibiotic, asking, "because is she sick?" and the answer is no, she's boucing off the walls. That's where he's conflicted.
Monday, October 19, 2009
CARRA is the group of pediatric rheumatologists. We are the "Friends of CARRA" and now the participants in the Costume Ball are too! The funds raised at the CARRA Costume Ball is going to make a difference in the lives of the over 300,000 children in the US living with arthritis. Friends of CARRA is a totally volunteer group. No salaries. No overhead. All of the money that is raised goes straight to CARRA to fund research. The website is http://www.friendsofcarra.com/.
Thursday, October 15, 2009
Last year brought approximately 350 people to Camas to support the 300,000 children with arthritis. And last year after the event, over 100 families said "Ahhhh...."as their children fell right to sleep coming home after a GREAT night of getting their boogies out!!
Monday, October 12, 2009
She's on some good meds to keep the arthritis away. However.... being on an immune suppressant like Methotrexate PLUS a TNF inhibitor (protein killer) like Remicade, puts a BIG OLE TARGET on Charlotte's back for "all things bad" (my professional verbiage for bacteria & viruses).
Only 2 weeks of Fall routines: going to preschool & attending ballet & BAM....
E.Coli 0157:H7. No idea how she contracted it, tried tracing it like a needle in a haystack but you know how that goes....
Started out with bloody diarrhea. Then the cramping & going potty every 30-45 minutes for 48 hours (no sleep on a Friday / Saturday night - but thankful it was a weekend!). And 72 hours later we find out the diagnosis.
"Cautious observations" is what the pediatrician wanted us doing with continued daily check ins from her pediatric rheumatologist. We were schooled on what COULD happen, the kidney failure that's associated with this particular strain of e.coli, and so we were on high alert watching, observing, judging, analyzing.
And when timing came for the possibility of HUS (kidney failure associated with 0157:H7), we took that turn & HUGGED THE CURVES & came out full force forward!!! Breathing a deep sigh of relief, and a great amount of appreciation.
WHEW!!!!!!!!!!! 1 week + 3 days later, we are now getting the poo analyzed by the labs (county public health says 2 negative samples in 24 hours is required to head back to preschool) & hope that we are getting back to school by next week's pumpkin patch field trip.
Nothing to see here folks, keep moving on..... lets get BACK on track!
ROWR! She's ready to keep FIGHTING & Carpe Diem!
Tuesday, September 22, 2009
1. My child may experience discomfort from arthritis even when nothing appears to be wrong. Please take her seriously if she says she's in pain.
2. My child may need to miss school due to medical appointments and arthritis flare-ups. Please let me know how I can help her make up missed work.
3. My child may tire easily or have trouble doing certain physical activities. Please be aware that this is a health problem and not a behavior problem.
4. It's okay to let my child's classmates know about his condition as long as it is done in an appropriate way. I'd be happy to help prepare a program.
5. Please keep the lines of communication open between our home and the school. My child needs all the adults in her life working together.
Tuesday, September 8, 2009
And this girl sleeping.... We want that girl back & are crossing our fingers for tonight! She's gone through 2 very restless nights of night terrors that are sooo freaky. I can be right in front of her & she's still screaming that bees are flying all around her. We are hoping that 3rd night breaks the cycle. Is she coming down with something? Is she sleep deprived, water deprived, stressed, body stressed? Its all out there being examined & we are trying to figure it out for her so can sleep well & have good days!
Friday, August 14, 2009
JUST when you think it might be (gasp) licked...
JUST when you start making future plans & setting the course for stretching medicinal intervals....
Then we get the reality check of what's really in control here. The disease.
Charlotte's routine eye exam, this week, showed a cell floating in her left eye. They call it a "trace". Waiting two days to hear from her uveitis specialist in Boston (Dr. Stephen Foster) on what that means exactly, has been deflating. Because thoughts are just racing of what this could mean or not mean.
He replied today that this one cell, a trace, is "trivial." But as one fellow JRA-mom said t o me, "I hope that one cell doesn't have friends..." & that's my worry exactly. Would love to have a Dr. set my expectations, is a trace something that could happen throughout her life? At some point (and we are nearing 2 years with Charlotte having this disease), I would like to handle & deal with more grace, the bumps, hiccups, & the"trace"! Its hard to not get frustrated & angry about these bumps in the road even if they are, as her Dr. put it, "trivial."
Wednesday, August 5, 2009
Wednesday, July 15, 2009
Tuesday, July 14, 2009
But we aren’t resting at home & during our summer outings between the ocean, the high dessert & the local pool, I have been learning “things” …. So let me give you a list of my latest readings, findings & favorites & document for myself so I wont forget!!
Eating: Panzanella (from Ina Garten - Barefoot Contessa: PARTIES!) Doesn’t keep – but you usually never have leftovers. Its my favorite summer salad!! My Father-in-Law’s favorite too (yay!!) !
Must Buy: Lip Stain from Mac (raspberry color) Magazines keep talking about this latest “just bitten look” & sounds like this one is the one to get! MAC See thru lip color in Secret Crush. http://www.maccosmetics.com/product/spp.tmpl?CATEGORY_ID=CAT166&PRODUCT_ID=1253
Gotta Subscribe: Body & Soul Magazine from Martha Stewart, chalk full of great stuff! https://secure.zt03.net/custapps/B+S/BS2/index.php
Quote: A good life comes from making choices that honor what my heart values most!
Look for: www.herbsaway.com / Crème de chocolat: Calorie Free, Caffeine free & sugar free (add to coffee or milk!)
Must make: Natural Mosquito repellant: 20 drops of thyme oil / 1 cup grape seed oil / 1.5 cups purified water
Chant: May I be healthy / May I be @ Peace / May I be Content
Check out: www.sukipure.com for skincare that’s natural & effective!
Suggestions: on covering up @ www.skincancer.org/clothing
Organize: The closet & if there are any old leather jackets you are not going to wear anymore, check out www.refindoriginals.com / she makes one of a kind purses & totes out of your old leather items.
Learning: To not shrug off compliments; honor & remember them!
Now... I am off to find a heart rate monitor watch so I can keep in that fat-burning zone. Why work harder than I have to during the summer!?!?
Tuesday, June 9, 2009
Yes, I am just a little aware of the sun & its affects & am a little religious about my covering up (even biking & running). And so, my little fishies in the summer time, are also in their long sleeve rash guards with glowing white faces due to sunscreen.
But today her pediatrician asked a pertinent question: "The reaction was only on her neck & face? Then that's not a sunscreen reaction or it would be everywhere you had applied sunscreen."
Addison is on a drug for her arthritis called Methotrexate. The pediatrician clued into this & it was an "AHA!" because taking methotrexate can cause "sun-sensitivity." And it truly did with Addison in a bad reaction sorta way during their vacation in Texas where the sun is MORE than intense, its just plain HOT down there!
Charlotte & Addison take Methotrexate at home, once a week, thru a shot given by us! In our case, we are now giving Charlotte her Methotrexate orally, but its the same "stuff." Methotrexate interferes with the growth of certain cells of the body, especially cells that reproduce quickly, such as cancer cells, bone marrow cells, and skin cells.
Methotrexate is used to treat certain types of cancer of the breast, skin, head and neck, or lung. Methotrexate is also used to treat severe psoriasis and rheumatoid arthritis.
In the Arthritis world, Methotrexate is the go-to drug. Its very common that most all the JRA children we know are on MTX (abbreviated) or have been at one time or another & now are weened off due to successful body response.
Friday, May 29, 2009
Ingredients 1 16.5 ounce roll Pillsbury Sugar Cookie Dough
2 teaspoons lemon zest
If you are looking for a recipe that will “Wow” people with the presentation this is the one. You can replace the sugar cookie dough with brownie or cake mix and you can get as creative as you want with the fruit. For 4th of July I make these using blueberries and raspberries. Red, White and Blue!
Directions Make sure the oven rack is in center position and preheat oven to 350 degrees.Place (12) Square Tray (I have a cute flower tray) on Perforated Baking Sheet. Cut sugar cookie dough into 12 equal slices. Place in Square Tray and press down to cover the bottom of each square. If you wet your fingers it will help to keep the dough from sticking to them.Bake for 18 minutes or until golden brown. When done let sit for 5 minutes then take out and cool cookie cups on cooling rack.In a bowl mix the cream cheese, yogurt, vanilla and lemon zest until blended. Use your heat resistant spatula to fill the pastry bag. When cookie cups are cooled, fill the square indent with the cream cheese mixture.Decorate the top of cream cheese with the berries or sliced fruit you have chosen.Chill for at least 1 hour before serving.
Tuesday, May 19, 2009
Thursday, May 7, 2009
My friend Laura & I started this event last year out of the drive to help heal our daughters. All the proceeds from this night will go to CARRA - Childhood Arthritis & Rheumatology Research Alliance: Pediatric Rheumy's in the US & Canada doing amazing research & clinical trials to find the cause & cure for Childhood Arthritis!
New this year will be the "Lara Blair Photo Booth" where you can get your family picture taken for $25 & receive a free 5x7!!
Yep.... thinking fall.... Send me an email at firstname.lastname@example.org for me to remind you about the event closer to the date! We would love to see you!
Charlotte went to her Remicade treatment today. Its been a year now that she's been going every 4 weeks for these chemo treatments. Today was the first time we stretched it to 5 weeks. She did GREAT (according to Daddy who took her since I was on a bus w/ 2nd graders for a field trip). She wasnt happy to be there, like always, but after the initial poke, it was done & she did great! I think there is something to getting older, knowing that its really not an option no matter how much you act out, but the whole older & talking her trhough it, I think is helping.
Two of our friends didnt have great days having appts w/ Dr. Foster in Cambridge (read Jenna & Jacob - blogs are linked on the right hand side), so this disease continues to frustrate & anger.... and that's why I try & focus on the Costume Ball & want to sing, "Put on your Dancin Shoes!"
Monday, May 4, 2009
Tuesday, April 21, 2009
Friday, April 17, 2009
This is one of my babies :) Now a wild, sporty, smart & always happy kindergartener!
Tuesday, April 14, 2009
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).
Wednesday, April 8, 2009
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
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:email@example.com
Sunday, April 5, 2009
* 1/2 cup brown sugar
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.... :)