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!

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!

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

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.

My Brain Hurts...

I love going to the doctor. I say that in jest, but a lot of times it's not so bad and I end up getting answers to very valuable questions. Like today when we went to see Dr. I and I asked her what the steroids were actually doing when Siobhan was taking them (she's been off of them since the 9th). By the way, how's that for awesome mothering? I agreed to put my daughter on a big medication without knowing what it was actually for. Fail! Anyway, it turns out the roids are used as a high powered anti-inflammatory. Since the inflammation is through her whole body, you need something intense to quell it and get the inflammation to a baseline and then control it from there with other medications. Make sense?

Well, we found out today that the prednisone didn't do all it was supposed to do. In general, Dr. I was pleased to hear that up until we went to Portland, there had been improvement. But she was disappointed to hear that her ankle got so aggravated while out of town and that it hasn't improved much since we've been home. She was also displeased with the lack of improvement in her left knee-the one that started it all. So we're getting more aggressive...more steroids!

You may remember that we was taking oral prednisone along with her twice daily anti-inflammatory and then getting an injection once a week all the while getting a bunch of supplements. But the oral prednisone didn't do the trick. So we're going to take Siobhan in sometime in the next two weeks (TBD) to have injections of a steroid straight into two of her joints-her left knee and the right ankle. Huge bummer. We talked about it at our first visit and didn't want to have to go that route, but it seems like the only option at this point. We have to get her body to a point where things are under control and we can prevent any further joint deterioration. So while the steroids won't make it go away, it will really calm things down.

But then there's more questions....(1) How is it done? (2) What is the difference between this and her weekly injections? (3) What are the side effects? (4) How often will she need them? Here are the answers as best as I know them. (1) We'll take her to Primary Children's Hospital and they will put her under general anesthetic. Dr. I will then inject her right ankle and left knee. The bummer part of it is the anesthetic part. Yuck! Hoping for easy transitions on that front. But they'll so all her blood work at that time, which makes her next blood draw much easier on everyone involved! (2) Aside from the obvious that it's a different medication, this one will go directly into the anatomy of the joint. Her methotrexate shots only go into the top layer of fat in her arm. (3) The side effect of this steroid are considerably less than the prednisone and usually don't last longer than the first 24 hours. There's always the added risk of 'infection at the injection site ' (I feel like I'm giving a drug commercial) and there is the possibility of skin thinning, but both are rare and easy to deal with. (4) At this point, there's no way to know how often she's going to need the joint injections. It's a case by case situation. Some kids get one and never need one again, others have to get them every six months. We'll know more at her follow up appointment about 4 weeks after the shots.

Some upsides from the appointment....Dr. I gave us the go-ahead for Siobhan to participate in any activity she chooses. She kind of told us that the first time around, but she was very emphatic about it. Also swimming. Also, we are switching her twice daily anti-inflammatory liquid suspension medicine to a once daily pill of a stronger medication. It should help a lot more and we only have to give her medication once a day now. Yay! In addition, Siobhan is eligible for two research studies which is cool!

Specialists...

Now that we have a more firm diagnosis for Siobhan, we are into the realm of seeing Doctor's who refer to themselves as 'specialists'. To me that sounds like a military team or a pretentious repair man. Maybe a just a pretentious doctor? I'm sure for the most part, they're not pretentious, it just sounds that way sometimes. Especially when you find out that their schedules are super exclusive! When I had to call the pediatric ophthalmologist at Primary Children's Hospital, they were all, 'Okay, the soonest I can get her in is July 12....lets see her then.' And I was all like, 'Um, I think we'll call the other referral.' The other place was able to get her in on May 24th. So I called yesterday morning to make the appointment with the rheumatologist and they said they didn't have a referral from our Doctor. So I called him (let a message, 'cause that's how docs roll) and let them know that they needed to send a referral. When I found out the referral went through, I went ahead with the process of scheduling the appointment. The nice lady on the other end of the phone line was all 'Why don't we see her on June 30th.' Hmmmm, Dr. W wanted her seen this week so that wouldn't work. But he did offer make calls and pull strings to get us in sooner. So I took the appointment just in case and had Dr. W use his connections. I found out today that they were able to get her in next Wednesday because they had a 'cancellation' that didn't exist 14 hours before. See what I mean, exclusive!

I wonder if making a donation is the medical equivalent of shaking a maitre d's hand with a dollar bill hidden in your palm.


****I feel the need to include the following disclaimer....I really do love Doctors and our pediatrician is especially awesome! Most of my above comments are in jest.****

Results...

We got the results from Siobhan's blood work. No evidence of anything cancerous (my Doctor knew that, however illogical it was, I was worried about that) but all results are consistent with inflammation and arthritis. So good news and bad news (on both the illogical/irrational front and the logical/rational front). And I love having a Doctor who is willing to pull strings for us. We couldn't get Siobhan into the Rheumatologist until June 30th, but he's making a call. I feel important!