Wednesday, December 23, 2009

It's not you, it's me! Coping as a parent...

Heading into Christmas here shortly & excitement is in the air at our house. Ellie has the sniffles, otherwise, everyone is healthy & doing well! Before seeing Santa yesterday, everyone got their 2nd round of H1N1 vaccine, so we can wrap up that package & put a bow on it.
H1N1 vaccine - don't say that Momma never gotcha anything :)

Last week, Charlotte received her 2nd treatment (of 4) of 6 week intervals for Remicade. She was on every 4 weeks, then we stretched her intervals to every 5, now 6 weeks. Her eyes are holding strong.
I would be 1/2 way premature saying she's ecoli free. Her 1st test came back today NEGATIVE (yippee!) so we are thinking positive thoughts for the 2nd tests (need two back to back negative tests in 24hrs to be welcomed back into society - this has been going on since October 1st!).

Having e.coli 0157:H7 doesnt conflict with getting her remicade treatments for her uveitis (arthritis in the eyes). So we moved forward with treatment #2 at 6 week intervals last week.

Charlotte woke up red, hot, irritated & her eyes looked like this:
The eyeball was bloodshot. The entire eye area was red. They were not irritated, she didnt touch them, she was just tired & grouchy. That's different how? Not super unusual so I put her in the car & we headed to the hospital. Our treatment started at 830, so that meant we needed to get up & going. I didnt think much about the redness, but when we walked into the Children's Day Treatment Center, you would have thought I brought in a wild alligator.

"Um.... that looks like pink eye, (shuffle me down the hall w/ the red eye girl)...Lets have you go in here...." and they put us in a room w/ a glass door & told us to stay put. No weight/height measurements, no potty, just SIT & stay.

They called our Dr. who said, "well....???? it wont affect the treatment if she does have pink eye" & explained that pink eye (conjunctuvitis) can be viral or bacterial. If its viral, there's nothing you can do about it but it is highly contagious (which is why the nurses were freaking because this center is for chemo patients whose immune systems are already suppressed - just like Charlotte's). If its bacterial & she starts gunking up (technical term there!), then you can apply ointment. But at this moment, Charlotte was just red. No irritation or gunking. So we went forward. And the nurses wore gowns & gloves to protect themselves from a possible virus. Overkill maybe? You didn't hear me say that.

And after all was said & done.... I rushed Charlotte home, left her with Daddy to jet up to the school & participate in what was left of the Holiday Celebrations before Winter Break with Em & El. Came home to snack & got ready to head out that night with girlfriends for games & holiday merriment. And then the next morning...

I was wiped. Just plain wiped. No motivation for anything. I hit a wall & just wanted to lay in bed. Honestly it scared me a little bit. After 24 hours I was able to analyze that hospital treatment days affect me more than I allow myself to comprehend. And the added stress of Charlotte contracting ANOTHER virus, put me over the edge a little (at least for 24 hours).

We have called them pity parties in the past and admittedly, I have had one here & there early on when learning of Charlotte's battle with arthritis. But this wasn't a pity party & I have finally realized that its just plain STRESS of trying to float through this disease & on the way taking it in the chin with e.coli, febrile seizure, her shyness & trust issues of those in white coats. The list is a little longer. But the point is the same. Realizing that there is stress with having a child with a disease & learning to cope with that stress.

Charlotte was diagnosed at age two & is now 4 years old. Not one day is the same, nothing has ever repeated itself. We finally have the eyes under control (over a year of calm & counting) & the 4 affected joints haven't flared since the initial identification of the disease. And my realization is that while we are starting to conquer the eyes & the joints, after 2 years, I have not conquered learning to cope, how to deal, how to get ahead & how to deal with the now.

Learning to live life with a child who has a disease is a journey that I can talk about in the sense of my child & her struggles with the disease & its veins of affectedness. But as a parent, I am dealing right beside her, without letting her (or her sisters) see me sweat. And I guess this week, I broke a sweat & ran right into a 24 hour wall of "time-out." SMACK! Ouch...

And by the end of this post can I say that I had an aha moment & have it all figured out? Cha! NOT! Wouldn't that be a sweet bow to put on this little package?!

Learning to live life as Charlotte's mom is my journey that's ever evolving & full of learning! Heck just being a mom PERIOD is applicable to evolution & learning, but toss a child with a disease into the equation & it feels like there's more potholes in our road, for the child & for me as their parent.

I did conclude a positive baby step that I will apply: Next remicade treatment, next curveball at all..... drop everything. No double booking on hospital day, there's no going out that day, there's no going into the classroom, no going out to dinner. Nothing. I need to come home & decompress & definitely have an early bedtime. Maybe a glass of wine, maybe some meditation that night, a little of both, just some CALM, some QUIET and deep breathing with the conversation acknowledging, "Today was a stressful day. Its ok, I made it through. Charlotte's going to be ok. Tomorrow will be a less stressful day. Tomorrow is a new day."

And the red eyes? The next day they disappeared. Completely disappeared. I have no idea what that was about. Curveball averted. Tomorrow is a new day! And I will continue to stay open about learning to cope....

Have you read this before? This story was on the National Down Syndrome Congress website. Its not an apples to apples comparison, but as a mother of a child with Juvenile Rheumatoid Arthritis & Uveitis, I understand ...

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

© 1987, by Emily Perl Kingsley. All rights reserved. Reprinted with permission of the author.

Saturday, December 5, 2009

Jingle Bell Run 09

Its time!!! The bells are being put on the laces.... we are pulling out the long underwear layers... its gonna be a cold one this Jingle Bell Run!
We love this run! Its the best way to start the Holiday Season!
Charlotte is pumped to run the 1K with her sisters (1st ever!).
And the sisters... they are proud of her, you can hear it in their voices.
Emma: "I'm going to run with you the whole time, ok? We can hold hands if you want!"
Ellie: "You're going to love it Tot! Santa will be at the end waiting for us & will give you a candy cane!"

This is the 2008 billboard around town. So the date for 2009 is Sunday, December 6th.
Its supposed to be one of the coldest days ever tomorrow. But its dry & sunny!! We've had it all these past 3 Jingle Bell Runs. My one love: DRY!!!
We have a great team this year, with some folks joining Charlotte in "firsts": We have our friends running their first ever 5k!! Emma & Ellie have 6 friends coming out to run as well as their teachers! It's going to be a Jingly Celebration!!!

Arthritis Foundation is the largest private, not-for-profit contributor to arthritis research in the world & advocates for research, public health, & public policy. We are proud supporters of this organization & what they are doing to help Charlotte!

Wednesday, November 18, 2009

0157:H7... again

I've turned into the CHEERS "Cliff Claven" of e.coli facts. Because 0157:H7 has turned our lives upside down. You know the saying, "if you know better, do better?" We know better now. We KNOW what this bacteria could have done to our child & now.... we know better. Its changed our lives. We have been drinking from the firehose of information. Books, documentaries, farmers, nutritionists.....
I wonder if i should grow up to be a healthy food advocate....
We are SOOOOOO lucky that Charlotte skirted it like she did, many dont. And hearing those stories... makes me just CRY at the complaceny we had in our home for what went into our mouths.
A picture is worth a thousand words. So put this movie in your Netflix queu: FOOD, INC.

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.
Eating & knowing where my food comes from & investing into my community, investing in my local farmer seems like the best spent time I can think of. But honestly.... talking about food, gmo's, corn & soybeans, e.coli & probiotics.... it IS work.... then I have also been meal planning, prepping the organic fruits & veggies, finding more vegetarian meals for us, searching out local meat... I am tired..... and that's why the blog is .... taking a backseat.
But I wanted you to know where I've been. Home with Charlotte who has e.coli 0157:H7. And she's working hard to shed it by drinking probiotics every day!! And she''s helping me to plan next years garden which will be 1/4-1/2 of our backyard :) and will be fueled by organic fertilizer (ie poo) :) e.coli FREE!

So..... ah.... g'night. sleepy sleep.








Sunday, October 25, 2009

E.Coli 0157:H7

As I posted earlier, Charlotte acquired e.coli 0157:h7 (the particular strain). And I have learned a lot about this bacteria.... like we all could be walking around with it & not know it?! Charlotte most likely acquired it through food, but its like a needle in a haystack since we dont eat gr. beef & we havent been to a fast food restaurant in a long time.

She got this on October 1st and as we round the corner to the end of the month, Charlotte is doing great. She's actually bouncing off the walls & we have done more art projects than I care to count :) HAHAHA! However, she still has this in her system & therefore, is not allowed back at preschool & if we are in contact with friends, they are fully aware (so they are ok with us being around them). If we go to someone's house, I go with Charlotte to the potty, I wipe her & we both wash our hands together.

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.

Where do we go from here? Not sure, will talk to the Dr. again this week after he consults with his collegues. And will continue to do art projects at home. Charlotte is a natural homebody & plays FANTASTICALLY by herself so yay for that. But she does miss her friends at school.

Silver linings in this are: our food in our house has been an evolution & this just bumped it up a notch. "Clean eating" & "eating simply" is taking more affect. Searching out & finding the organic farmers in my area & driving to them to find the fresh eggs & the organic apples has been FUN & yummy! Our meat consumption has lowered and looking at "Foster Farms ground turkey" makes me nauseuas only because I have no idea what "ground turkey" is. I now buy from Whole Foods who ground it just that day & can tell me that its "ground turkey breast." YUM & whew. A relief to know where the turkey came from (they advertise the actual farm) & what part of the animal it is.

Monday, October 19, 2009

BIG SUCCESS!!!


Thanks to everyone who came & were there in spirit at the 2009 CARRA Costume Ball!

What a blast!!! Over 350 people participated
& we raised over $4k to support Friends Of CARRA!CARRA stands for Childhood Arthritis and Rheumatology Research Alliance. It is made up of 246 pediatric rheumatologists from across the U.S. and Canada. They have come together to collaborate and conduct high quality clinical research to find the answers to the many questions about childhood rheumatic disease, such as: What is the cause? What are the best treatments? What are the long term outcomes? How can damage be avoided? What is the cure? CARRA's doctors are working together to find the answers.

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/.
This is us....
This is why we do it....
Our donation link is still open if you are interested in donating to the CARRA Costume Ball: http://www.carracostumeball.com / go to tickets & you can donate! THANK YOU!

Thursday, October 15, 2009

CARRA Costume Ball - 2nd Annual!


The 2nd annual CARRA Costumbe Ball is Saturday, October 17th. A family fun benefit for Childhood Arthritis & Rheumatology Research Alliance. All ages will have fun dancing to the DJ run music, winning prizes playing fun games & participating in group dances! Come in costume & have your family picture taken by Lara Blair Images for $20 (donation going to CARRA) & receive a free 5x7!

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!!
Join us this year in person or in spirt by registering or donating online at http://www.carracostumeball.com (click tickets). There's a great raffle & registering online will ensure you 5 free raffle tickets, which are a $1 a piece at the event. Several hotel stays around Oregon are offered, an American Girl doll, an autographed Nolan Ryan baseball... so much more!

Monday, October 12, 2009

2 weeks on, 2 weeks off

For Charlotte who's been battling arthritis in her eyes since November of 2007, the meds she's on sometimes get a big ole pointer finger BY ME!

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

Dear Teacher, This is Charlotte...

Charlotte has started preschool! She's thrilled about going, loves her new friends (girls names are all I have heard, no boys names ... is that the 3rd girl in a family thing?!) and ADORES her teachers. So do I! When Charlotte was first diagnosed with JRA, her older sister Ellie was attending this same preschool. I shared with them what we had learned as a family about Charlotte & they shared with me their empathy, understanding & knowledge about the disease, the medical field, & foods that affect the bod. We had great conversations and a great deal of sharing between us.
When Charlotte leaves this cocoon of safety & love & hits "the big time" in kindergarten where she could be one of 600 at the school, I am reminded of what I will need to share with them, rewinding time to when she was two & diagnosed with Juvenile Rheumatoid Arthritis & what that could mean for her today:

Five Things Teachers Need to Know
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.

With deep respect & monumental gratitude, Charlotte's Momma

Tuesday, September 8, 2009

I'm THAT mom...

School has started, we are on day 4 & the hand washing immediately when they walk through the door has paid off. So far. All these reports of H1N1 hitting fast & hard on college campuses has me worried.

So when we went to "Back To School Night" before school started to meet our teachers & drop off our supplies, I became "THAT MOM."

To the 3rd grade teacher that I don't know yet, I wasn't sure what family history she was aware of.

"So... (wait for it)... my only concern (wait for it).... is really what my daughter could bring home (here it comes).... I mean in terms of illness. You see, our youngest..." insert quick synopsis of Charlotte here & a brief mention of her immune suppressant drugs, her monthly visits to the hospital & eye exams. Try to do it fast, don't lose her in the details, but emphasize your point of concern again.... KIDS. GERMS. PARENTS!!
I tried to chuckle & make light of a heavy situation so I wasn't "THAT MOM." But the truth is... I am. I admitted it to myself that I am that mom because its my job AS their mom. My point: I want kids to stay home if they aren't feeling well. I want parents to know that pushing their child out the door if they haven't been cleared of a fever for 24 hours, puts my ill-child at risk. Just by exposing Charlotte's sibling to the germs of 3rd grade, can cause a "bring home & share" affect. Charlotte's sisters have strong immune systems & healthy bodies, they can blow through cold season without a sneeze. But Charlotte's immune system is soooo outta whack, it doesn't know if its coming or going. Any little thing coming in contact with her can throw her off. "The Girl In the Bubble" isn't an option, believe me, I looked into it (again, please insert laugh here).

So I hope to share ourselves more with our 3rd grade teacher, so she knows that we are not obsessive compulsive. We have a good sense of humor & an understanding of carpe diem. Our lives have just been rocked a little & we are always on a bit of a teeter totter with Charlotte's health. Anything to keep her above water... is sooo appreciated. H1N1 is not on our side & we want to keep it out THERE.

We have 2 eye appts before her next round of remicade. To see if that one cell was just a wacky thing or see if he's brought friends. We had an excellent visit with our pediatric rheumatologist at our last Remicade infusion & we are prepared if tomorrow's eye exam shows more than one cell, what direction to go and what that could mean. I don't want to throw that vibe out there, so for now, we will keep positive thoughts that the one cell is still a lonely cell or he's gone away. We will know tomorrow.

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

Don't Get Too Comfy

JUST when you think you are on an even road....

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

A year off drops

This is the month to celebrate 1 year off of steroid eye drops for Charlotte. When uveitis appears, Pred Forte (steroid eye drops) are immediately started to curb the inflammation. Those drops did not work for Charlotte (even dosing hourly for weeks). That is why she went on Remicade & Methotrexate (started in March 08). She has had no flare ups in her eyes & the combination of Remicade & Methotrexate is a good combo for her, its doing its job! We will go 7-8 more months of Remicade & Methotrexate before we start to taper (a total of 2 years being on that combo).
Charlotte was getting Remicade every 4 weeks & now we are in our 3 dose of every 5 weeks. We will taper that to every 6 weeks after a 4th dosage. A little slow for the stretching of the intervals in our Ped. Rheumy's opinion. But we needed to go slower on that stretching only because if there had been a hiccup & she got a flare up, it would be back to square one. So i like to be a little more conservative, a little more cautious ...

Next month Charlotte starts preschool. She is excited, we are excited, she will have a BLAST with her friends & her sweet, adoring teachers. They are well aware of Charlotte's history, they were with us from the beginning (since Ellie was attending there when we discovered & went through the beginnings of the uveitis & the joints).
Are they ready for this girl?!?!?

And not to be a worry wart, but I am cautious because being at school also means being susceptible to virus's & bacteria (colds & chicken pox!). So that is also why i am a little slow & stretching out her successful Remicade intervals. She's entering a new phase in her life where she's open to more ... stuff! So we are taking our stretching slow & celebrating every ophthalmology visit, every "finish" of her Remicade!!! And we are counting down....

Wednesday, July 15, 2009

A Good Lemon

Sometimes I will buy the big bag of lemons at Costco, just to put in a bowl & display. Its fresh & lasts longer than flowers! But then the guilt of food "just sitting there" gets to me. So I tested out this smoothie recipe on the girls yesterday, and it was a HIT! Thanks Family Fun Magazine!

Banana Lemonade Cooler

1 Banana
3 T. Honey
1/4 cup fresh Lemon Juice
6 ice cubes

Acutally my 8 year old made it, it was so simple, so fresh & very delish! She's not a fresh fruit gal (GASP!) so smoothies are our vice! Do you have a good smoothie recipe to share?

Tomorrow is Remicade Chemo Day for Charlotte (who loved this smoothie by the way! - also try making it into popsicles, dont add the ice, put into molds instead). Its going to be a hot day here, so after Remicade, if she is still awake & has enough energy, we are going swimming with her sisters (whom she begged to come with her to the hospital, but the offer to play dolls with friends surpassed the guilty rejection) in the evening! As Charlotte is getting older, she is understanding that we HAVE to go to the hospital. She's not freaking out so much. She also is clueing in (finally) that's she's being bought for calming her nerves. A new Polly Pocket doesnt break the bank & gives her something to play with while we are there! Yay! Its good all the way around, and this too shall pass!

Tuesday, July 14, 2009

What's that?

Since my camera was “bitten” by the puppy (I am sure it was an accident – since I left the point & shoot camera in the same bag as highly smelling peppermint lip-balm), I have been documenting ZERO finds & ZERO activities thus far this summer.

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!!) !
http://www.foodnetwork.com/recipes/ina-garten/panzanella-recipe/index.html

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

Sun Sensitivity Caused by Meds

My friends can always spot me at the community outdoor pool in the summer. I'm the gal in the long sleeve zip up w/ a big floppy brimmed hat & long sloppy pants &flip flops (with my feet glistening from all the sunscreen & my exposed tops of hands white from the zinc oxide!).

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.

Charlotte's "sister" Addison, her JRA BFF (preschool buddies & future kindergarten classmates), recently had a reaction to their sunscreen a few weeks ago. Or so they thought.
So I gave her Momma our newest find to try & there was no reaction! Winner!

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.
So now Addison's Momma is shopping for new rashguards with new knowledge.
And maybe her momma will join me in my "look" at the pool!
Covering up is the the new bikini you know!
Happy Birthday Addison! Happy 3rd birthday TODAY! :) We love you lots!!!

Friday, May 29, 2009

Here & there....

Ah the busyness of life sure does slow down the blogging a bit. But taking a break from packing the "snack bag" for tomorrow's triathlon is an appreciated task!

Here's what's up!
1) Triathlon
2) Recipe
3) Methotrexate question

1) Tomorrow morning is the Hayhurst Kids Triathlon that I mentioned in my last post. Its teachers like Mr. Hayhurst, an elementary PE teacher, who changes the lives of children & inevitably changes the world to be a better place! Health=Happiness=Peace on Earth! This is his 8th year & all the money raised for this event goes to childhood arthritis & rheumatic diseases research. He's a triathlon man himself, plus an uncle to his niece who has a rheumatic disease. He's a good man, cheers to Mr. Hayhurst tomorrow, please :)!
This will be Charlotte's first year, she is going to run the 1/2 mile :) (wink!). We shall see! The other two, I am hoping that they will do all 3 events just because I know they will be so proud of themselves afterwards to complete all three. But I had to go over some visualization techniques with Emma tonight who isn't feeling confident about her swimming ability because of last year (her 1st race & before she gained confidence that she COULD swim). Wish her luck tomorrow:) Ellie will do whatever Emma does :) or if there's a cookie as a reward! Packing those too!

2) Went & scrapbooked tonight, yet somehow I am still working on Christmas 2007.... How long does it take to get Christmas Oh Seven completed? But the food was yummy! Amber made brownies that she put marshmallows on the top, they got ooohee & gooey & were sooo good! We are big fans of Demarle cookware. She did the brownies in a star mold - so cute. I brought Fruit Flowers that have 12 little flower molds, they looked sorta like the picture, but cuter :):

Yield: 12 servings
Ingredients 1 16.5 ounce roll Pillsbury Sugar Cookie Dough

6 ounces cream cheese
4 ounces vanilla yogurt
1/2 teaspoon vanilla
2 teaspoons lemon zest
1 cup assorted sliced fruit and berries
Any combination of fruit that you would like or that is in season. Blueberries, blackberries, strawberries, sliced peaches, kiwi or even bananas.

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.

3) Never would have thought about this - but share with me what you know please! I have a prego friend who is giving her daughter methotrexate injections. Since she's prego, is there a reason WHY she SHOULDN'T be giving methotrexate to her daughter? There is nothing in the label that says anything about it, but another JRA Mother who also happens to be prego, brought this up to my friend. We couldn't find anything online about this.... And I know that my nurses at the hospital (who both are prego) have to call in another nurse to hook up the methotrexate and the remicade for Charlotte. If tomorrow weren't Saturday, I would call & ask them, I will on Monday. Reader: Do you know anything & can share? Thank you!

Tuesday, May 19, 2009

Hayhurst Triathlon '09

For the past 8 years, Mr. Hayhurst (an elementary PE Teacher) has been coordinating a family fun event to showcase a triathlon to children. Children are invited to do one, two or all 3 events & we parents join right alongside - and all the teachers from Mr. Hayhurst's school are there clapping & encouraging the children as well!

100 yard swim (or dont!)
2 mile bike (or skip it)
1/2 mile run (maybe this is for you?)

Or all 3 if you are willing to give it a try! Its non-competitive but FULL OF FUN & encouragement! Every child that crosses the finish line gets a medal put around their neck by Mr. Hayhurst!

He's also the uncle to a little girl with a rheumatic disease. So your registration to participate goes directly to find the cause & cure for children like his neice & our Charlotte!

Are you in the Portland area on Sunday May 31st? For more information or to obtain a registration form send an email to: hayhursttri@gmail.com

Thursday, May 7, 2009

Are you planning your costume?

Getting ready for the 2009 CARRA COSTUME BALL! Just got these masks shipped from New Orleans for our poster photo shoot. 4 little girls with JRA will wear these masks to publicize our family fun costume event happening in October. Its a great time for the whole family to enjoy the spirit of the season, family games, food & lots of fun dancing & competitions!

October 17, 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 carracostumeball@gmail.com 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

Moving Forward

.... continuing from last post: The Dr. recommended we do stretch out Charlotte's current Remicade treatments from 4 to 5 weeks. He believed this was a good route to take given her current ability to hold steady since August w/out steroid eye drops. The route we are taking w/ Remicade & MTX is working, now lets see how well its holding & if we are starting to nip it in the bud.
So this Thursday is the 1st 5'weeker (like a niner) Remicade treatment. We just had her eye appt today where all is quiet in the pretty blues. Charlotte also had her eyes dilated since we hadn't done that in awhile. That wasn't fun for her but necessary. It allows the ophthalmologist to look at the optic nerve & make sure there is no damage there. It also allows her to check vision more accurately than the picture tests Charlotte wings every month (we adults do letters, children do visual pictures of single objects: hand, car, cake, horse, telephone).

All is good. Amazing body clock in her though, she's been asking since this weekend when she is going to the hospital. She knows its coming....without a calendar its like her body alarm has gone off & she wants to prep the pouting, the depression, the whining :) Its good to get a head start on those things! HA!
We had some hot cocoa tonight w/ dinner since the rain wouldn't stop & it was a bit stormy: some warm chocolate was needed! So here's the girls after getting a shot of whip cream in their mouths! (another piece of evidence that we wear a Tottie's Prettie every day, even w/ jammies!)

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!!