Jingling and Doctors...

First things first, so many people donated to our team and supported Siobhan for the Arthritis run and we could not be more grateful! It was amazing and gratifying to have so many people show Siobhan so much love! You all rock! Now, I've had a few people ask me if they can still donate and the answer is yes! The fundraising page is going to be open until Dec 31 so you can make your end of the year donations. Here is a link to Siobhan's page where you can go and donate if you want to.

Now, on to other important stuff. We have an appointment on Thursday (tomorrow, today, all depends on when you read this) with Dr. I and I can't help but be a little nervous. Since Siobhan's diagnosis, we haven't gone more than 6 weeks between visits and this go around it's been 3 months.

A lot can happen in that amount of time and a lot has happened. It's winter which means the barometer is low (or is it high-either way, up or down, it can be trouble for arthritis), Siobhan started basketball and she's been sick a few times. I'll be interested to see how that all effects the JIA. But I'm going to be optimistic and pray that she's still in remission. That would be a great Christmas present!

I hope all is well in your life!

So Long, and Here Comes The Winter...

This is going to be a quick post, but I wanted to say a few things...

Number #1

Have you headed over to join our team for the Jingle Bell Run/Walk? Registration has gone up to $30 but you do still have time!!!!! Also, you can always make a general team donation. There's a kids 1K and the price is always $10 with Elves along with an Elf Village where kids can do crafts. And, of course, you can donate any amount you like until the day of. This is a great way to kick off the holiday season and we want everyone to share this with us!

#2
So winters here. Anyone who knows anything about arthritis knows that that can be a tricky business when you are prone to stiff joints. We've had a few days of Siobhan has woken up with stiff/painful knees. It doesn't seem to be keeping her down too bad but I worry that as the weather gets colder, it will get worse. :(

Big News....Jingle All The Way...

Whenever the Arthritis Foundation has a big event, they always choose a child with JIA to be an honoree-sort of the face of Arthritis and 'voice for hope' to show that life can be normal. Back in June, we were able to meet James Light who was the honoree for the Arthritis Walk. He was super sweet and very inspiring. You can read it here. Siobhan even sees the same Doctor!

Well, we were given the opportunity for Siobhan to be the honoree at this years Jingle Bell Run/Walk so we jumped on it and we just got word last week that it's official! How exciting is that!!!! We're so happy and excited to be able to share her/our story with everyone who is struggling with arthritis and to bring awareness to the fact that there is a huge need for more research, but ultimately, what we need, is a cure!

For this event, our family will be able to help in some of the planning of the event, work with local media, share our story with the community and Siobhan will be able to start the race. We also started a team just like we did for the walk back in June.

Now, I really don't like to solicit people for money or ask a lot from people, but this is obviously something that is really close to our family so I am going to put it out there. So here's where you come in....

1)We need team members to fun with us! There is a $25 reg fee which goes toward our fundraising goal of $1500.

2)If you don't live close, you can still donate to our team. A lot of very generous people donated to us for the last walk and I definitely don't expect that again. But the option is there. If you've never donated before, just know that any amount helps.

3)Come and cheer us on! There is going to be a lot of fun stuff going on at the Jingle Bell Run/Walk so come and get into the holiday spirit and cheer on 'Siobhan's Secret Weapons'. Through this whole arthritis journey, the moral support has meant just as much to us! Surrounding ourselves with people who want the best for Siobhan has been awesome!

If you're interested in helping us one way or the other, here are the event details:

When: Sat December 3
8.30-10am : Registration
9.15am : Holiday Costume Contest!
9.40am : Kids 1k Run with Elves
10am : Timed 5k Runners Begin
10.10am : Untimed Joggers/Walkers Begin
5k Results + Awards Ceremony to follow.

Where: Trolley Square-Southwest Plaza

How: You can run or walk, timed or un-timed

So if you want to join our team head on over here and find our team. This go around, we've called our team 'Siobhan's Secret Weapons'.

Rated R, for Remission...

So it's been like a week, but I haven't been on the computer as much as normal, so I haven't really blogged much. Most people already know our great news about Siobhan's arthritis, but I wanted to put it out there for the masses (how many of you are there?)

Last Thursday, we had a visit with Dr. I-she's Siobhan's rheumatologist and she's awesome! We were there for a follow up to check on Siobhan's joint injection sites. As usual, she ended up doing a complete examination of all of Siobhan's joints to make sure that her affected joints are doing well along with making sure that the arthritis didn't feel like attacking any other joints. Everything looked so great, Dr. I couldn't even remember which joints were injection because none of the typical signs were even there (i.e. tissue atrophy, dimples at injection sites). We got good news at that point that there was no adverse reaction to the injections. Woo Hoo!

Then Dr. I laid the big one on us. Siobhan is considered being in 'Clinical Remission with Medication'!!!!! This is a big deal and I'll tell you why. We've always been told, that there are a few possible outcomes for this arthritis journey. 1) Siobhan could outgrow it. That happens to less than 25% of patients. We're not holding our breath. 2) Siobhan would have continual flare ups and issues for the rest of her life. 3) Complete remission where there is no signs of active arthritis in any joints without any medication. Well, we are on the first step towards getting to number 3!

So how do we get to #3 you ask? Right now, Siobhan's status is defined as having 'no active signs of arthritis in any joints with medication'. So we know that if we took Siobhan off of her weekly injections, her arthritis would rear it's ugly head and cause us all kinds of problems. So we're going to keep her on the Methotrexate for a year from September 8th and see how it's looking at that point. If her status is the same at that point, we'll take her off those weekly injections and if she can handle that, then she will be considered to be in 'True Remission'.

We're so excited about this because it took a little longer for us to get it under control than it usually does for typical patients and we had to do a little more than most. But we're there and that's awesome! Dr. I took us off of the 6 weeks visit schedule and moved it to every 3 months-so that's awesome! Over the next year, we're going to hope and pray that the meds keep working and that the arthritis doesn't decide that it likes her elbows or hips or any other joint.

There's nothing like seeing your daughter in extreme pain or watching them try to keep up (granted Siobhan didn't have a huge problem with that, she just found ways around it). But there's also nothing like knowing that the likelihood of seeing it again, has been exponentially decreased!

School Started.....

3 Days into the new school year and all day kindergarten and this little cutie pants....

Is doing awesome! No issues with stiffness or soreness and so far, she can do everything on the playground! Counting our blessings!

Beautiful Eyes Are Still Beautiful...

*Yeah, I've been MIA...Mr. Will shoved something into our DVD drive and it messed with somethings so I haven't been on the computer for a while. But we have a temporary fix and now I'm back on! Woo Hoo!*

Anywho, onto the big news, on Monday (Aug 22) we had another appointment with Dr. P the opthamologist. If you don't remember, one of the issues associated with JIA is Uveitis which has no symptoms so frequent trips to the eye doctor are necessary to make sure that there is no inflammation.

At our last appointment, the doctor was unsure about Siobhan's ANA results so we were put on a three month visitation schedule. (We did find out in the interim that Siobhan's ANA was negative which is VERY exciting!!!!) At the Doctor's appointment, everything went very well and everything in Siobhan's beautiful eyes is perfect! We are so happy and now we don't have to go back for six months....which means yea!

In other JIA news, Siobhan seems to be responding well to the steroid injections. We're going to the doctor in about 10 days for a follow-up. I think we're going to have some good news!

Siobhan during an impromptu fashion show wearing Nama Nadene's old-school, vintage dress

Success...

I was going to title this post 'big success' or 'huge success' but I want to keep things in perspective. Anyway, this afternoon Siobhan was so excited and came into the kitchen and knelt on the floor. Kneeling has been hard the last few months so this was very exciting! She could kneel down on the floor but couldn't sit back on her heels. Kneeling for family prayer was always a fight because of it. Criss cross applesauce was also problematic.

So when Siobhan came into the kitchen and knelt down on the floor, the first thing I noticed was that she wasn't just kneeling, she was sitting back on her heels!!!!!! Yippee!!!!!!!!!!! I asked her to sit criss cross applesauce and again, not problem! I had her lay down on her back and bent her left knee toward her chest and boom! No issues! This is so exciting!!!!!!! And that's without any of her meloxicam (daily anti-inflammatory) today as well. I'm so happy but best of all, Siobhan is so happy.

I can't imagine what it must be like for her to not have any pain. It must be such a big difference and I'm so happy for her!

I want to be realistic as a lot of kids have their symptoms come back within a few months of the steroid injections. So I'm determined to remain cautiously optimistic. I'm just looking forward to (hopefully) more than just a few months of no pain.