Sunday, December 19, 2010

Sniffles come with....

Ah the immune suppressed child.... the sniffles and the "ahem" clearing of the throat every 2 seconds has become a constant around our house for the last month & a half. Charlotte can't shake it... it hasn't gotten worse, but it doesn't get any better.
So I should not have been surprised when we went to the eye doctor last week (she always gets seen before her next round of Remicade treatment) and she saw "one cell" in Charlotte's right eye.

We are not freaking out, this happened a year ago with Charlotte... and what's good to note... is when Charlotte isn't feeling well, where does the arthritis go for her? Her eyes...

Children with whacked out immune systems, when exposed to a virus, might have a little flare....and Charlotte's flares, evidently, as the pattern has been showing, are going to go to her eyes.
What's next? We see the eye doctor sooner than we normally would. We will visit her in 4 weeks rather than 10 (before the remicade treatment). Hopefully Charlotte can conquer her sniffles in 4 weeks & kick that cell to the curb....
Gotta say, have had several conversations with mom's lately about our "other children." And sometimes the guilt of not being in their "moment" when we are dealing with our sick kiddos gets to us. So we live with the guilt, try & remember to be in the moment but also cut ourselves some slack & remember that the other cherubs are learning a lot by living with a sick sibling. Here's a rainbow to that situation.
Charlotte's sisters were at the eye doctor and when Dr. Goodman shared the presence of the one cell, Charlotte's big sis Ellie asked, "Just one cell? What does that mean?" And Dr. Goodman explained it in SUCH a great way that Ellie continued talking about it on the way home & shared with other folks later....

Dr. Goodman explained, "The immune system has gotten the message that there's a virus that they need to fight, but there isn't a virus. (I said remember we call the white blood cells the army men because they have gotten the message they need to go fight a cold?) We don't want those white blood cells in the eye, there's definitely NOT a virus there. So we hope he doesn't invite his friends...."

Ellie really got that, could visualize it & talked about it with her little best friend the other night. Seeing the empathy, the understanding & the sharing can help relieve this Momma's guilt a tad... and hopefully having a sick sibling encourages our sweeties to be the change... to find cures & be activists in the future. Or little activists now!

Saturday, December 4, 2010

JIngle Bell Run 2010

Thank you to Tottie's Team representing at the Portland Arthritis Foundation Jingle Bell run on Sunday, December 5th.

Thank you to the veteran's who mark this their 4th year running or walking (My parents + sweet friends Lori & Courtney!)!

Thank you to those who made it their first year last year & are back for more! (O'Neill & Leask families, PHE Staff & families: Jill & Patti & Stephanie!)

And to the newbies - THANK YOU! We hope this will become your holiday tradition every year! Jingling all the way & celebrating mobility, health & the Holiday Spirit!

And for those of you reading in the Portland area ... Have I intrigued you? Would you like passes to the Nike Employee Store? Those are hard to come by & our Arthritis Foundation chapter rocks at enticing you to join us :) Let me know! I will ping you in July to sign up!

Thank you Tottie's Team! Have a GREAT race! Its not raining & its not snowing, this is a REALLY good year! Thank you so much!!

Friday, November 26, 2010

Thankful +....

Thankful for....
Imaginations....
Beauty...
Health...
Good Eats...
Artists...
Family...
Friends!...
Aspirations...
Drive...
Thankful for the encouragement to continue to dream & encourage & love. Thankful!

Monday, November 22, 2010

Thankful...

Thankful for the power of persuasion....
Signs are put up all over the house by Emma (age 9) who is arguing for HAM instead of TURKEY this Thanksgiving...
She realizes it was never a question, right? Thankful for the glimmer of hope in a young girls eye! :)

Wednesday, November 10, 2010

Moving

Charlotte's body is quiet with her arthritis, medically controlled. All is good for her, so as we are watching her grow up & her abilities lengthen, its easy for us to forget about the arthritis.
Case in point: Ellie's "Great Skate" birthday party. It was my mom, (Marmee) who was watching her whiz around the rink & asked, "That's a girl with arthritis?"
Three years ago we watched her limping & begging to be held, wondering what she would be able to do in the future.
Her joints affected: both knees, an ankle and a wrist. But they are all working in harmony, flexibility & quietly today! (thank you injections, weekly shot of MTX & infliximab Remicade)
We got Charlotte roller blades last year to help with her skiing. Yes skiing! I thought, "no way, it's too cold, I wonder if it will cause her pain, I am sure she won't last a minute up there."
She's the one that will tell you she's happy for the rain at our house because that means its snowing on the mountain!

Arthritis hasn't stopped her and the constant moving is good for her joints. This winter we will get her back into the swimming pool, which is one of her favorites and I do believe the kindest to her body.
Grateful for the moving!

Friday, October 29, 2010

Ready for Halloween

We've been Boo'd!
Special treats for special kiddos on our small street!
Thank you AndersRuff gals for our BOO & treat favors!!
Thank you Holly for taking SUPER pictures!
Preschool celebration = making monster wind socks. Charlotte's was crying. Sad monster!
These bestest buddies could save the world! BUZZ with SUPER C!
Getting ready.....

Monday, October 25, 2010

Scenes from the weekend...

Thanks goes out to Martha Stewart for pulling together a great list of pumpkin carving tools. No more plastic things.... its BIZNESS time! Pumpkin BIZNESS! Two girls in my house have just "discovered" Harry Potter & its all Harry, all the time (That's Harry Potter & Severus Snape)! Can you tell who is still FIVE & FANTASTIC?! And I went for a classic pumpkin face while Ryan was director of the entire afternoon pitching in where needed.

Saturday, October 23, 2010

At this juncture...

At this point in Charlotte's treatment, Dr. Foster (eye specialist in Cambridge) asked us to email him, and remind him of the treatment.
Below is my email & his response:
-------------------------
Hello from the Pacific Northwest!

It was great to see you in April & put together a game plan for Charlotte's weaning from her medications. During our visit, you requested we email you at this time in our medications to double check with the movement of the weaning.
Since you last saw her, Charlotte remains flare free (eyes & joints) & healthy.
Charlotte - DOB
Age 5
Current Medications:
1. Methotrexate .5 mls
2. Remicade (started at every 4 weeks for one year, 5 weeks (4 sessions), 6 weeks (4 sessions).

In April, the following plan was created:
1a. stretch Remicade to every 8 weeks (4 sessions)
1b. Then lower her Methotrexate dose by .10 mls (.4mls) - moving forward it will now be .4 mls
EMAIL YOU....

2a. stretch Remicade to every 10 weeks (4 sessions) (takes us into July 21, 2011)
2b. THEN lower her Methotrexate dose by .10 mls (.3 mls)

3a. stretch Remicade to every 12 weeks (4 sessions)
3b. .3 mls of mtx - then we will be done....

DROP ALL TOGETHER
June 21, 2012 (last remicade session at 12 weeks)

We are @ the end of 1b. and wanted to check in with you like we planned to move forward.
Thank you Dr. Foster!
-----------------

Thank you.

Yes, I still like the plan. Stay on it.

Best Wishes,

Stephen Foster


Sunday, October 10, 2010

Getting Control When There Is No Control

Charlotte is going on her 3rd year of having arthritis, but the feeling of helplessness was so immense when she was first diagnosed, that I remember that feeling very vividly.

I realized I had no cotnrol over Charlotte's arthritis when she was 1st diagnosed & her disease provided bombshell after bombshell. First the joints, then the eyes, then the joints again. Then we "fixed" the joints with injections, but the eyes proved more stubborn.
The only control I had was over my research. Lots of reading, lots of sharing between friends (ie parents of arthritic children) & hubby. Knowledge of juvenile arthritis & uveitis was scary at times but also provided a sense of control for me....
The stories about arthritis in the eyes are frightening. All the scenarios including what could happen if left untreated. And then if you do treat it, what could happen if left on steroid eye drops for too long (how its initially treated). I had moments of ..."what about natural" this or that. Definitely the meds were scary enough with their side effects (leukemia??).

The research led me to other parents across the nation. They have shared their stories too (right hand side are links). None of our children are created the same, and that includes their ride on the arthritis train. Each one has dealt with different severeties, different approaches, different meds, different timelines. But the sharing, the talking, the comparing & inevitably the knowledge is what has given each of us a tiny bit of control when we are feeling completely out of control with our child's health.
When Charlotte was in the throws of battle (Winter/Spring of 2008), I had professional pictures taken. They hang around our house. She has steroid cheeks and super dark eyebrows. All effects of the steroids that we were pumping through Charlotte to get rid of the uveitis (which never worked but left her looking not like her self at all). I look at these pictures not with the sighs of "look at how little she was..." but instead of a little sadness of how she looks & a then sense of strength because "we got through it!" Its a reminder of tough times & love & knowledge... when we got in control when there was no control.