Saturday, December 20, 2008
Thursday, December 18, 2008
The snow came down hard & my mom was worried about the roads, but we made it to their house, dropped off Emma & Charlotte & headed into Portland where the roads were fine. She was positive for STREP THROAT & both her pediatrician & I happily thought we scored with that diagnosis. He siad, "YES! we can treat THAT!"
Then he started asking about the sisters, when was Emma's fever, when did Charlotte have the ear infections. The amazing & cautious Dr. he is, he suggested I get the sisters & bring them back for a lab to make sure THEY dont have it.
UGH! Back to WA, get Ellie's meds & some yogurt, get the 1st dose down her, drop her off w/ Marmee, pick up Emma & Charlotte & Poppa & head back into Portland. Quick trip, but one that was taking time off our sledding clock as the good snow was starting to disepate.
They were negative (yay & assumed so), so back to WA where the girls had about one more hour of sunlight.
On went the snow gear, gloves, boots, hats & off they went to find the neighbors to plead them to come back out (after I am sure they were out ALL DAY!) for 'their turn' at the slopes (ie driveways).
I was shoveling the sidewalk (because I love our Fed-Ex & UPS delivery people!) & Charlotte pointed to her foot & was crying, "I hurt." I didnt see anything happen so I internally said Uh Oh & then went on with stuff & told her to shake it off, or something to that affect.
After dinner I got up on youtube to process her recital videos from Tuesday. Then I see it, her babying her ankle & then pointing to it & complaining to the teacher.
So I give Ryan the heads up on the puzzle pieces of what I heard/saw & ask Charlotte to sit in front of me so i can compare the ankles.
One is swollen on the top & puffy to the touch.
How? How on 200mg of Remicade & .5mls of Methotrexate can a child have a flair up of Arthritis?! UGH IT ANGERS ME!!!!!!! I punched my fist into my hand & thought of my gameplan. I was blank.... 2nd opinion call goes into Cindy who simply reminds me of the "team" we have in place, ask our Pediatric Rheumatologist.
Ya, that's a duh but I think when you are thrown off your game, you kinda blank. So a message is into the good dr. to see what he thinks & if he wants to see her. Could it be a flair due to the ear infections? The cold? Her sniffles? Will wait to see what he thinks....
Meanwhile, the amoxicillan is back in the house. This time for Ellie, mixed berry flavor, "I only like grape." Not the best patient in the house that's for sure :) So 10 days of griping & complaining from a 6 year old who has NO IDEA HOW GREAT SHE HAS IT is going to be dreamy right?!?!?!? :) hahahha!!!
Sunday, December 14, 2008
Wednesday, December 10, 2008
Tuesday, December 9, 2008
After the kids 1K, we did the 5K & Charlotte fell asleep snug in her stroller. :) Ryan ran in 32 minutes & felt great! Fantastic turnout in Portland! It was the kickoff to our holiday season for sure & the abundance of presents: support from family & friends wrapped in jingle bells! Thank you!!!
Sunday, December 7, 2008
Future prom dates? Blake & Ellie were at preschool together, now both kinders. Emma & Nate were in kinder together, now both 2nd graders.
Wednesday, December 3, 2008
1. It hasnt been updated because I am trying to simplify daily living & that means some days the computer does not get turned on (becaues I know my weaknesses and its called blog & facebook & CNN! & its like a timesuck, before I know it children are eating out of Skippy Jars, and dirty diapers are all over the house.... TEE HEE! Just kidding :) There's no skippy bought here & no one is in diapers!). Simply living has meant also going through "stuff" realizing what we dont NEED, what we need to get rid of and living within a budget. Big Sigh... all takes time! And we are continuing to work on it this month....
2. Charlotte has her eye appt today. We are up this morning at 4am becaues I think she has another ear infection. We both came down with head colds this weekend after turkey day. :(
3. Where have I BEEN?! Well gosh...Here, there & everywhere I guess :) After the last post of football saturday, Ryan & I left for Costa Rica for a week without the girls & puppy. it was a good little adventure but we sure missed the girls BIG time. We came home just in time for turkey day which was YUMMMMEEE & my little "what can i do to help cards" worked FABULOUSLY! I am now whipping out some Tottie's Pretties just in time for the big Camas 1st Friday! There will be a tree lighting ceremony & I hope that the community is out that night!
Sunday is the Arthritis Foundation Jingle Bell Run! Charlotte is a grand marshall so I hope to have the amoxicillan kicking in by then :) TOTTIES TEAM is almost complete & we will have a fun group with us this year. I am excited to see her run the kids 1k w/ Emma & Ellie & with all her grandparents there, her aunt/uncle & friends, its going to be a very fun morning (And think DRY! Dry makes all the difference!!) :)
Saturday, November 15, 2008
A quick trip to Starbucks for some goodies before we drop Charlotte off at Marmee & Poppa's. 3 years old is a hard age to enjoy a football game! But soon enough....Tailgating with Grandpa:
Final score: Oregon State Beavers 34 California Bears 21
Sunday, November 9, 2008
I am getting organized for Thanksgiving. Not only the meal but the day itself becaues I love this day, I love the food, I love GOOD food & I love sitting & enjoying meaning of the meal! Last year, I went to Williams-Sonoma two Sunday's in a row to learn techniques on turkey making & with the help of their apple brine & compound butter, it came out moist & OH SO TASTY! And the classes were FREE!
My friend Krista Colvin, an organizing & lifestyle motivator, has come up with some REALLY great tips for me this year that I am totally incorporating into our day! See her ideas on our local morning show: http://www.katu.com/amnw/segments/33758474.html
sigh.... Starting around 5pm yesterday, Charlotte said, "Momma, my ear hurts! Can you get it out? Look in there, can you get it out?" Get it out? That's a new one. Now mind you, I first thought she might be hallucinating or going through some wierd concussion thing because 30 minutes prior to the ear talk, she got on her bike without any supervision and thought she would ride it DOWN the driveway. Yes, we have a slight incline in our driveway, so our girls are told to walk their bikes DOWN to the sidewalk & then start riding. I think this will be the last time Charlotte decides to coast downhill, because she picked up speed, went past the sidewalk, through the street (thank goodness we are on a deadend w/ only 17 houses in our neighborhood) & hit the neighbors driveway & went head over handlebars. A nice strawberry is on her forehead but that's IT, THANK GOD! Seriously..... oye vey! SO... back to the ears.
Charlotte is asking for "meddy" - so why not?! Here's some motrin. But like clockwork, about 6 hours later, it wore off (@ 11pm) and she was crying. Its the earache cry, you know the one of the whining (i think it gets its own category).... yep... so off to the Dr. today (love that they are open on the weekends) & now she's on some drugs for that & is now napping on my bed. Good news, she can still do her remicade treatment in 4 days. Learned lesson for mom & dad: She now tells us when she's in pain & can be very descriptive about it. And we are paying attention because of her story. I love the verbal's though, can I tell you!? It's a new experience for us to have her be so descriptive in her pain...
My supply is restocked with some CUTE, cute, cute new ribbons, flowers & bows! Oh my goodness there's some cuteness here with fresh, brand new looks. I really love the christmas bands & have even made some gold & silver ones that are especially glitzy! I think they can go all winter long! The all red ones are so cute & could be worn for every national holiday, Valentines & Christmas! This red ribbon is stitched in white which adds just a little something to it!
I have been invited to bring the bands to downtown Camas for "1st Friday" on December 5th from 3-9pm. I am so happy to be a part of a fun evening for families, celebrating the season & memory making!
I have got the etsy site UP & running. I struggle with it because inventory changes so fast because I dont like to make "20 animal print w/ black bow." I like unique, different, 2 here, maybe 3 here. Classic tone on tone, I do my best to keep those stocked. But the best way is to say, "Pink!" and then then I have about 15-20 options just in the pink department that I can snap pictures & send! What's your color? I can do that!
Thursday, November 6, 2008
Before I even read this article tonight (about older children with arthritis not wanting to share with their peers), we were talking at the dinner table about something that triggered us to jokingly say to Charlotte, "Oh what because you have arthritis?!" And we all laughed (insinuating that she cant get away with things "just because" she has arthritis). Charlotte said, "I dont have arthritis." "You dont?" "Nope..." and then something else happened & she said, "Oh i DOOOO have arthritis!" I said, "Oh NOWWW you want to claim arthritis huh!?" She shook her head yes. Does she even know what we are talking about when we joke around?!
Hopefully her experience with this disease will be a non-issue since she has had it for as long as she can remember. I hope Charlotte is so ingrained about me sharing with others about her arthritis that she too will want to share & educate & talking about it will be a non-issue!
Children Suffer Arthritis in Silence
Children Keep Silent About Juvenile Rheumatoid Arthritis
By LARA SALAHIABC News Medical Unit
Nov. 6, 2008
Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.
At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.
Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway.
"Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."
Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.
The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.
But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.
Lying to Keep the Secret
Although some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated.
"Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."
Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends.
"Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.
Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."
In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.
Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis.
"Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."
Finding Someone to Tell
As debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.
But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him.
"Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."
Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.
While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment.
"Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."
Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition.
"Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."
Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her.
"With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."
While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child.
"In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."
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