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

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....

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.