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!

1 comment:

Lisa Milton said...

So sorry about the news. I wish these appointments were easier for you.

(I'm glad you found a support group.)

Enjoy your celebrating and baking; I'm thinking about you.