Friday, July 30, 2010

Eyes are clear!

Since heading to Boston over Spring Break to see the Uveitis specialist (Dr. Stephen Foster) & configuring the new "in home" medical treatments for Charlotte, I had been remiss in prempting her Remicade infusions with her eye appt with Dr. Goodman. When I 'fessed up, she nodded with a "yes come in now, dont wait..." And I appreciated that! And then I followed up with booking them out so I wouldnt space on that again!

Dr. Goodman is located in Lake Oswego, OR. That's a good 30+ miles south of us. She usually comes to our town once a month & we can get in to see her, but since we needed to get in because of "mommy's been slacking on your appointments", we packed up & headed south.

ALL is good. Her eyes are clear. And when I shared that Dr. Foster said that at some point we would need to start doing her pressures, Dr. Goodman tested right then.
Eye appointments for Uveitis check:
1) Vision tests

2) Cover tests (checking how the eyes work together)

3) Slit lamp test which examines the front of the eye (iris) & then the optic nerve (the inside of the eye). The slit lamp exam is the only way to pick up on uveitis (arthritis in the eye). I have been told it looks like fireflies flitting around in the eye (the white blood cells in the iris portion of the eye).

4) Then because being on steroids for uveitis can cause glaucoma or scarring in the eye, it is necessary to take "pressures". This is done with a tool that touches the surface of the eye to measure the amount of liquid in the eye. If there were scarring or glaucoma, the fluid wouldnt drain properly, therefore accumulating fluid. But in a healthy eye (like Charlotte's ... NOW :)) there is no scarring (YAY!!! I give a big thumbs up to our fast action of getting on the meds & getting off of steroids as fast as possible - 6 months... and that was fast, really!) the eye ball is draining properly because of zero scarring & so pressures are good. Hip, hip, HOORAY!

Charlotte has her eye exam before every Remicade treatment (every 8 weeks) to make sure that the remicade + methotrexate are holding the arthritis at bay before the next treatment. Even taking pressures, she's come a long way baby - she's a pro!!

Dr. Goodman was in agreement with Dr. Foster about the conservative weening for the meds (another 2 years) because of Charlotte's early onset, the aggressiveness of the disease, etc. Charlotte was one of Dr. Goodman's tricky patients, but she said "every child is different" for how you attack this disease & the roadmap to get rid of it.

All is good today :)

Sunday, July 18, 2010

Arthritis...Continuing to claim children

In one week, I have learned of 3 new families around our community who's sweeties have acquired arthritis. At first my heart sinks, knowing the confusion & the sadness these parents are going through. I have been there. And then I get a little angry. Because even if I dont know you, I hate that you are going through what we went through at the beginning. The sadness, confusion, lack of control & the thirst for knowledge & stories of others. Then my anger gets quickly turned into productivity... because I cant stand the disease but I also have to have "some" control & that is the ability to help those who are helping find a cure!

CARRA - Pediatric Rheumatologists working together to find a cause & a cure. Every dollar given goes straight to research. My Tottie's Pretties headbands goes to this organization.
If you live around me, I will be sending you an email about walking & running in the Race for CARRA, happening September.

Arthritis Foundation - December 5th will be the Jingle Bell Run. Our favorite way to start the holiday season. Join Tottie's Team! http://portlandjinglebellrun.kintera.org/tottiesteam
Tonight is shot night. Some of these new families will start to understand the ritual of this night. Ours has evolved over the last 2 years. Here's our current ritual: Daddy gives the shot (change from me!) & he uses the numbing cream (she wanted it after watching our friend Ellie use it for her shot). And she has to have Ellie there to give her a hug while she gets the shot.
She holds on to Ellie TIGHT & Ellie loves to be the hugger. "Who loves you!? See? That wasn't a big deal, it didn't even hurt!" (Ellie is 7!) And then Daddy gives Charlotte a hot wheels car as a reward for holding still (she loves her cars!!).

Thursday, July 15, 2010

Perks? Support!

Contacting the Arthritis Foundation chapter near us was a great way to get immediate support when Charlotte was first diagnosed with JRA. They offered meetings, education & opportunities to get together with other families going through similar situations.

There are also opportunities to do fun things with other JRA families. This Friday, through the Pacific Northwest chapter of the Arthritis Foundation, we are going to see an airshow at McChord Airforce Field.

We will witness many acts including the Patriot Jet Team, a MiG Fury mock dog fight (Yes, I am now saying MiG & reenacting the scene where Goose & Maverick explain how they saw it... the bird... You remember?!?!), F/A-18 demo flight & other aerial demonstrations.

It will be an amazing time & a great opportunity. The Arthritis Foundation holds many wonderful events to support families and we are thankful for the opportunities!

Monday, July 12, 2010

Oregon Coast

Summer continues with little getaways.... Lincoln City (Taft) at the Oregon Coast.
Stayed at Looking Glass Inn where dogs aren't only welcomed, they have their own little care basket at check-in!!

Wednesday, July 7, 2010

Summer Memories in Central Oregon

Holiday weekend spent in sunny Central Oregon (Sunriver) close to Mt. Bachelor but with daily views of Mt. Jefferson, Three Sisters, Broken Top & the mighty Mt. Bachelor. Love it. And the Girls get their magical memory making moments with their grandparents.
Goodbye for the summer.... See you Mt. Bachelor with our ski's on!