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.

Injections...

Well, our 'Stint in Juvy' took a turn for the slightly more intense today when we took Siobhan in to have her joint injections. First some background and clarification on what was actually being done and why. The basic gist of it all is that the prednisone that Siobhan took this summer didn't do what it needed to do. We were using it as an anti-inflammatory but after six weeks, the inflammation didn't go down enough and Dr. I was not pleased with the result. So she recommended that we just put the steroids right into the joints themselves. Does that clarify it all a little better?

So this morning was the big day. Because Siobhan was going to be under general anesthetic, she had some very specific requirements as far as diet. We were told that if the instructions 'were not followed exactly, the procedure would not happen!' So I got up really early to head her off in the morning. You see, Siobhan has this problem when she gets up and I'm not up yet. She gets into the pantry (or our 72 hours kits-we won't talk about that) and she snacks in the morning. Well, today was not the day for that. She wasn't allowed to have any solid food after midnight last night, and nothing after 7 am. So I got up at about 6:45 to make sure that there was no snitching. It worked because, wouldn't you know, today was the day that she decided to sleep in...until 8am.

We took Siobhan to Primary Children's Hospital at the University of Utah-they are amazing, more on that later-to their Rapid Treatment Unit. Got all checked in went to the 'pre-op' room where the nurse took vital signs and all that good stuff.

*Vital Signs*

Then the best lady came in and explained everything to Siobhan about what was going to happen. She used pictures to show her what the room was going to look like, had a mask to show her how it would feel and let Siobhan pick out the flavor that she wanted to breath in while being given the anesthetic.

Funny story, she had probably 10 flavor vials for Siobhan to smell and pick her favorite. They made a like and dislike pile but the like pile was much bigger than the dislike pile....like she put every vial in the like pile. It was pretty funny. When the anesthesiologist came in Siobhan still hadn't decided. She was leaning toward Cotton Candy then decided on Cherry and the anesthesiologist was happy because he said the cotton candy was too sweet. But in the end, she went with Cotton Candy. They let Me and Carson smell it and OH MY GOSH, it smells just like childhood!

Anyway, Siobhan chose Carson to head back with her while she went 'under'.

About 25 minutes later, Dr. I was back in the room telling us that everything went awesome. She got the needles in just great and she even drained some fluid off of the left knee. She also let us know what we need to do when she got home. That includes keeping her laying down for the first 24 hours (you try keeping Siobhan down for 24 hours....good luck!) and limited activity for another 24 hours. Then about 5 minutes later, a nurse came and brought us back to find a very loopy Siobhan sucking on a straw and drinking grape Fanta. She was hilarious! The first thing she said was 'Mommy, Daddy, I feel dizzy!' and she had a huge goofy grin on her face.


She also got a snack of cheetos which was a big treat because I don't let them in the house (I hate cheetos). Pretty soon, she was loaded into a wheel chair and we were heading to the car (and the torrential downpour).

We were so nurvous about today and I'm glad that it turned out that we really didn't need to be. Between the mention of the words anesthesia, steroids, and injections plus the fear of the unknown and we were, needless to say, a little worried. Siobhan has been resting well and has had minimal pain which has been managed with tylenol. Dr. I also told me that if everything looks alright, we can stop her daily medication and only do her supplements and the weekly injection. How great is that?

And now a word about Primary Children's Medical Center...I know that all children's hospitals are good, they treat children right, so they have to be good and you have to have great people in a setting like that. I just think that PCMC has to be one of the best. We are so lucky and so blessed to have the resources offered there at our disposal. I'm not sure if we would have had the same level of treatment in Denver. Maybe we would have, but I'm learning that Pediatric Rheumatology is a hard department to come by and we are so lucky to have such a beefed up department so close to us. All the nurses at PCMC are friendly and caring and they treat you like you and really your child is the only one who matters. I'm so grateful for that.

It truly is a humbling experience to walk through those doors. Talk about putting you in a vulnerable position with a mixed bag of emotions! At first, you feel grateful that it is available to you and that you only have to be there for a short amount of time, but then you see a parent with a child walking around and you recognize, through subtle clues-exhausted eyes, conspicuous hospital bracelets, jammies, that they have essentially made their home there and you can't help but feel sad for them. I'm so grateful that, theoretically, we will not be in that position as a result of Siobhan's arthritis.

Ear Infections...

No, Siobhan does not have an ear infection. She has been listening to us talk about her joint injections and since she doesn't understand what they are, the closest thing that her brain could come up with is ear infections. Isn't that funny! Anyway, we're going to Primary Children's Hospital in the early AM so we can have her left knee and right ankle injected with steroids. Yay! We're hoping that it's going to be a one time thing. Dr. I is confident that it will be a good thing, but we won't know how often she'll need the injections until she's had this one and we've seen how she's handled it.

Carson gave her a wonderful blessing this evening and we're confident that we have the Lord on our side. Please pray for us and Siobhan and all those involved. I'm going to take the computer with us to the hospital and I hope to update the blog while we're waiting.