Wednesday, December 26, 2007

Boxing Day

Happy Boxing Day!
Earlier in the day we called Dr. Kingsbury because over the past few days, Charlotte's ankle has gotten stiffer (worse) & so when we visited with him last week he said he could fit us in on the 28th (Friday), so after watching her refuse to go up & down stairs on Chrsitmas, we decided we would call him & see if he could still squeeze us in. He can, so we are scheduled that afternoon.

Then its home to root on the Beavers in the EMERALD BOWL in SF against the Maryland Terrapins! Beavers vs. Turtles - its scary isnt it?! :)

Friday, December 21, 2007

Ho Ho Ho for Tottie

Ok so lets get to it factually: Latest visit to the Pediatric Rheumatologist (Dr. Daniel Kingsbury @ Emanuel Children's Hospital) showed that 2 more joints have crept into the JRA category. Her left wrist & her right ankle. So the majority of our visit consisted of what next's for the what ifs.

We have a lot to think about for the direction we want to go & I will explain but for now Ryan & I decided that we will WAIT to make any decisions until our Jan. 2nd appt with the opthamologist (Dr. Shawn Goodman) to see if we have controlled the eyes. From there, we will make some decisions about the direction to head with medications.

Charlotte is currently on no medications - minus the hourly steroid eye drop. If we have the eyes under control on January 2nd - then we will go in for a treatment to the joints that are now affected.

If they eyes are not looking better - he recommends we go on Methotrexate which is a slow acting medication - we wouldn't see any positive effects for several months. He said its the 'go-to' drug for eyes & joints. It has two decades of experience with kids. It would be a weekly shot we would give her.

SO! If this were just affecting her joints, we would just keep treating her joints with injections. However, since its in the eyes, the injections don't affect the eyes. Methotrexate works with the eyes AND the joints. However, if we were to go on methotrexate NOW, we wouldn't understand the fruits of our labor with the current eye drops.

So we will wait to meet with the opthamologist on the 2nd & see how we are looking. Dr. Kingsbury said that iritis is a very roller coaster issue... but we will wait & see.

So those were the facts. Mentally - ugh what a day yesterday was with our appt. Its so hard to see him (our pediatric rheumatologist) - it was our 3rd visit & I honestly told him "I like to see you because you give us such great education, on the other hand I have such anxiety & reservation waiting for the other shoe to drop." He's very wonderful & empathetic & calm & thorough. He's truly a partner as is our opthamologist. That's been nice to have in our corner.

HOWEVER :) each time we have seen him, its tough!
1. yes she has JRA in her knee (october)
2. now its in both knees (november)
3. now its in both knees & her wrist & ankle (december)

Its hard news to swallow. So we came home & there waiting for me in my email were notes from the gal at the Portland chapter of the Arthritis Foundation w/ a name & email of a parent support group. I no sooner sent a fragment of an email just asking to be included in the group, then I got a response, a LOVELY, caring, empathetic response of "yes, we are here, we meet, we talk, we share & we learn." Exactly what i needed to hear.

But even better, the 2nd email that said "i read your blog. Let me tell you about my daughter." And that sharing with me of her daughter who now is a college student & is participating in TRACK of all things, was EXACTLY what i needed to hear.

Because watching a two year old, continue to receive news that her body isn't working the way we would like it to work & she could have this forever, she might not, she's in for lots of dr's appts ahead & maybe many medications, is overwhelming, scary, sad, bewildering etc! All of the above. Especially in a two year old. Who is emerging as a baby into a little person with a personality so we try and not squash those hopes & want the world to be her oyster & we need the hope that the world IS her oyster!

So that was yesterday (Thursday). And so that was a rough digestion. Then I went to a holiday ornament exchange party looking completely ragged (no eye makeup after this day!) but wanted to see friends and hear laughter & not THINK for awhile. It was wild, it was crazy. I brought a popular gift (whoo hoo look at me! a Santa cup & saucer) but picked a very unpopular gift which i am ok with...(a PINK glass ball ornament) that no one wanted to trade me for :)

But ended up talking all evening to a new & emerging friend, which was lovely because she's just as much a thinker as I am (good & bad) so we talked all about this & the feelings that go along w/ dealing with having your child diagnosed with something wild & crazy like this! But we also got to talk about ornaments, food, hubbies, kids, etc which is vitally important :) AHAHA!

Ok & now, i am very tired & am off to bed because the next few days are all about CELEBRATING & we started today with a good friend spending the day with us playing! So! The cookie regime starts tomorrow with making dough, the next day baking, so Monday we are prepped for all the decorating! Fun Fun Fun! Merry Christmas!

Wednesday, December 12, 2007

Charlotte & Iritis - Arthritis of the Eyes

Charlotte's eye appointment didnt go well today. After 3 weeks of steroid drops, I was hoping to hear that we had controlled the arthritis that had gone to her eyes. But we dont have it under control and are back to drops every hour for the next 2 weeks. We will see the eye dr. after the new year and see where we are from there.

Charlotte has Iritis & here's a description of it:

Arthritis is usually thought of as a disease of the joints, only and rarely thought of as being a problem for the eyes. In some ways, the eyes have much in common with knees or other joints as both are relatively self-contained with definite boundaries or walls that create fluid-filled cavities, or spaces, of connective tissue. The eye's version of arthritis is called uveitis. Just as in many cases of arthritis, determining the cause of uveitis is baffling and frustrating.

Iritis occurs in about half of children with pauciarticular (sounds like posse- ar-ticular) JRA, which is what Charlotte has - affecting four or fewer joints. JRA-related iritis is often asymptomatic and is known to continue into adulthood (fantastic). Right now Charlotte is being treated for iritis with glucocorticoid eye drops.

Technically, uvea is the collective term for the three different elements that form the pigmented tissue of the eye -- the iris, ciliary body, and choroid. These three tissues are joined together throughout the eye, and together they are known as the uveal tract. Uveitis is the general name given to any inflammation that strikes the uvea.

The iris is the circular, coloured part of the eye behind the cornea, which also controls the pupil to open and shut in order to regulate the light that enters the eye. Specifically, when an inflammation occurs in the iris, it is called iritis.

There can be symptoms of uveitis including blurry vision, red eyes, photophobia (sensitivity to light), floating spots, and pain or aching around the eyes. But the eye dr. doesnt believe that Charlotte is suffering from any of these symptoms at this point. Charlotte requires more frequent eye exams because if left untreated, uveitis can lead to a large number of even more serious eye conditions, including cataracts, glaucoma, and damage to the retina, cornea, and optic nerve.

We will see the pediatric rheumatologist on Thursday, December 21st & he will talk to us about option b if we cant get the iritis under control. The eye dr. didnt want to go into those options utnil we had talked to Dr. Kingsbury, but said that it could be a steroid pill swallowed or an injection done once a week. I will also be talking to him about a parent support group for families who have children with rheumatoid arthritis. Ryan & I shudder every time we think about all these steroids, but we just dont know what else is out there to do. And it would be nice to talk to other families that are going through this. I am also looking into supplementing with understanding an anti-inflammatory diet for Charlotte. Because maybe there is truth to the balance of we are what we eat & if we can control foods that are natural inflamatory foods then hopefully we could get this under control.

Monday, December 10, 2007

Tiny Dancers

video

Ellie is our HAPPY FEET girl! During her recital this holiday, little sister wanted to get in on the act. Ellie didnt mind sharing the spotlight (she's so great!) because she was focused on her tapping! Which was pretty stinkin' cute! Ellie has the big flower in her hair, 3rd from the left. Charlotte maneuvered herself to be right in the middle!! WOW :) She's 2, dance classes dont start till age 4, but we might have to find some sort of kinderdance or something for little ballerina (who wears her tutu EVERY DAY!).

Sunday, December 2, 2007

Tottie's Team


Thank you Tottie's Team! Thank you Marnie, Chance, Teresa, Missy, Jamey, Maddie, Kay, John, Katrina, Kendra, Lori, Courtney, Neal & Cathy! What a wild weather event we had, but your enthusiasm, support, love & legs were tremendous!!! And for all the supporters who couldnt make it out today: THANK YOU! Shannon, Ashley, Charlie, Linda, Kelly, Michelle & John - we know your hearts were with us & we appreciated that! Thank you all for your support & your spirit!!!
Despite the pouring down rain (it did start to come down harder towards the end & we expect flooding in the next 2 days), we all made it! I was so proud of the girls running in the kids race! Maddie, Katrina, Kendra, Emma & Ellie were chaperoned by Missy & Kay for the run & they all did it as we cheered them on!!! GREAT JOB!!! Santa greeted them at the end for a little treat & a hug!

The 2007 Jingle Bell Run in Portland supported the Arthritis Foundation. Charlotte (Tottie) was our little hero of the day. She wanted to run with those girls so bad for the 1K, but the weather & the early morning made her just want to snuggle into momma, so she joined us on the 5K & I held her for a 1/4 of a mile until it was time to go into the stroller. She was a trooper to stroller for an hour in COLD, WET conditions!!! After the event, we headed home to starbucks for some hot cocoas - then off to the showers, where the smile came back to Charlotte's face! AH! Warmth & home! :)


We were tired today, but as I have said before, we did it because we can! Why did I run? Because I can... I am not very good, but that's ok, i will keep trying & keep going because my body CAN do it.

I watched th grand marshall of the race today, a high school girl from Central Catholic. She has JRA like Charlotte, but is on a medication that allows her to play soccer & live life as a cute, energetic high school girl! She held her friends hands as they skipped across the finish line today. And as I watched her skip, I thought about her knees, her ankles and her feet & thought how remarkable that she can skip, and skip high. I was so happy for her, because, even though I dont know her, I have seen Tottie not be able to move her legs at all in stiff, agonizing pain that the arthritis causes. I started to tear up, watching this girl & her friends & thought how wonderful it is for her that she can share in the joy of movement with her friends, & how happy she must be! Its one of those things you can take for granted until you see it, or know it. And as I watched her skipping in joy, I hoped that Charlotte will too, be able to skip, run, jump & do whatever her heart & mind want her to do, and do it with ease & without pain.

Thank you again to all the supporters! I love you all so much!! Jingle Bell Run 2008!!!! You in?!