The Good Times Keep On Coming....

It's been a long time since I've posted here, but I'm going to re-double my efforts on the all of the blogs that I author or contribute to. I make myself sound so important, but really, I'm not. Anyway, we've had some fun things happen for us and our family, most especially Siobhan, in the arthritis world and I wanted to share them. So here it goes....

1. The Jingle Bell Run/Walk was awesome! We were the top fundraising team and I think that we ended up with right around $1000. We had a great time at the event. I will do an entire post about it soon including pics and video.

2. Siobhan and I were chosen to go to Washington DC to represent our congressional district at the 2012 Congressional Arthritis Summit! We are so so so excited! But we haven't told her yet, we have something fun planned to tell her the news. While we are there, we will get to meet with our congressman and possibly our senator where Siobhan will tell them her story about suffering from arthritis. We hope that while we are there, the lawmakers in our country will take notice of the effects of arthritis on so many people in America, especially the 300,000 children who have it. We will attend trainings and seminars and learn about all the ways that we help bring a little bit of change. (ew, I sound a little like a politician) We're going to be doing some sight seeing as well, so that's going to be awesome! And the trip is paid for by the congressman's office so that's pretty cool! The summit is April 16-18.

3. Every spring the Arthritis Foundation holds a black tie gala to honor people in the community who have made big contributions to the cause of arthritis treatment and prevention. These people may suffer from arthritis or not, they may serve on boards, write fat checks or just do an exceptional amount of work with the foundation. Well, at this gala, every year, they pick a child with JA to decorate a plate and then present that plate to the honoree. Well, this year, they are honoring two people and Siobhan was one of the children chosen to make a plate! So lat Friday, we went to Color Me Mine and Siobhan made an awesome platter for one the honorees. It was great fun. Siobhan and I will attend the gala in April. So exciting! I can't wait for her to have the experience and to get her an awesome fancy dress!!! And it's all happening right before the summit!!!

4. Siobhan is officially on the planning committee for the upcoming Arthritis Walk in May. We're having fun going to all the meetings and sharing ideas for how we can make the event an even bigger success!

5. I was asked to help create a pilot program through the Utah branch of the Arthritis Foundation. The program is a parent/peer/family support group for families with kids who suffer from JA. Right now we're in the planning and initiating stages getting ready for a
'launch' at the walk on May 5th. I'm in charge of setting up a blog, we're going to have a facebook page, organize activities, craft nights, Q&As, all kinds of fun things. One of the hardest parts for me as a parent when Siobhan was diagnosed was not knowing anyone who really knew what we were going through. So this is our way of filling that need. I'm working with a staff member at the foundation along with another parent and her teenage daughter. So far, it's coming together really nicely!

In other news, there has been a significant set back in the arthritis community in the last few months. Oddly enough, this actually coincides with a setback in the cancer community as well. You may have heard about it in regards to various forms of cancer, but it effects the arthritis community as well. One of the most widely used medications for those with Arthritis is a drug called methotrexate. Siobhan is on this med and gets it via a shot once a week. We credit this drug with helping her go into remission and keep her that way. This drug is also used (in much higher doses) as a life saving treatment for children with Leukemia. Well, there is now a nation wide shortage of this drug and it's causing a lot of worry. While I understand that with Siobhan, not having a the drug will not cause her lose her life. But it could mean her having so much pain that things like walking, running, even sleeping could become extremely difficult, maybe even impossible. There are other drugs out there for her (even other forms of this med) but the results are no where near as good and the side effects, in some cases, are much worse. But that is where we are blessed, even though the alternatives are not as good, at least we have them. Unfortunately, it seems that Cancer community really does not have any alternatives. For more info on how this shortage pertains to arthritis patients read this. I hope and pray that the shortage can be overcome quickly to minimize the suffering of so many people who rely on this medication. I hope you'll do the same!

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!

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.

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!

Shots and Ear Piercing...

Siobhan has been getting her methotrexate shot for almost 6 weeks now. As her reward, we told her that she can get her ears pierced. We've never been opposed to her getting her ears pierced, we just never thought it was the right time. But we thought that if she can handle getting a shot on a regular basis, she can handle getting her ears pierced.

Well, this Friday will be number 6 which means it's time! I think we're going to do it when we're in Portland next week and see if some of the cousins want to come. Here's the problem. I'm nervous about where to go to have it done. I was going to go to claires, but then I read some things online where people had some horror stories. I've been told by a lot of people not to go to the piercing pagoda so I think I've ruled that one out. And believe it or not, I've even thought of taking her to a tattoo/piercing parlor because I've heard that they are super clean. And did you know that some pediatricians do it too?

So here's my question, what is the general consensus of where to get it done? Should I just stick with Claire's or does anyone have any other recommendations?

Not Much to Say...

I realized today that I hadn't posted in a while. I don't know if I have any loyal readers, probably not, but I thought it might be good to put something up just in case. I've been asked a lot lately how Siobhan is doing and it's so gratifying to know that so many people are thinking of Siobhan and praying for her. It really means a lot.

Siobhan is doing well. We are all just adjusting to life with Juvy and making the best of it. I think the thing that is bothering Siobhan the most is side effects from her medication. The prednisone is doozy and it is making her quite emotional. Because of that, we started to taper her off of it a little sooner than expected. So she's going to be off of it about a week sooner that we had planned. We're very grateful for that. We go back to the rheumatologist on July 14th and we're hoping for good news. They need to do some blood work to make sure that her liver function is up to snuff (the methotrexate can have a negative effect of the liver) but I think she will be fine. We're hoping for improvement in the swelling and improved flexibility which I think is starting to happen already.

We are playing with different ways to make her shot a less negative experience. A sweet sister in the ward brought her a beautiful statue of Christ which Siobhan always makes sure she has with her. This past Friday, she didn't cry at all when I gave it to her because we decided on a 'shot song'. I had to sing 'Who Let The Dogs Out' and it seemed to work! She's only one shot away from getting her ears pierced. We're all very excited!

So that's the long and short of it. Not too many updates, but things seem to be going well. Love that little girl!

I Must Remember...

Dr. I told us that Siobhan would have a shorter fuse and have more adverse reactions to conlfict while on the prednisone. She also said that it would be made worse due to the fact that Siobhan wouldn't know or understand why it was happening. So I have to remember that it would really suck to not understand why something is happening to your body.

As adults, we may not always understand why something is breaking down in our body and why we have to take certain medications. But what we do understand is that it's inevitable, a part of life. Right now, I don't understand why I'm taking so long to loose my baby weight. But I also know that I just had my fourth baby, I'm getting older, and not eating as well as I should. And when It take certain medicines that may have a side effect, I may not understand why, but I do that it's highly likely to happen so I anticipate it to a certain degree.

What I can't imagine is having something like that happen when I'm 5 1/2 years old. Think about what it's like to be a 5 1/2 year old. I imagine that Siobhan is somewhat like most kids her age. She's worried about play dates, running through the sprinklers and getting ready for kindergarten. She probably just recently figured out that she has bones and that she's the oldest child. But then you throw into the mix that she now has to take medicine everyday (sometimes twice a day) and those medicines make her a little crazy. But she doesn't know or understand why. She knows that her knees are swollen, that they hurt, and that she has something called 'arthritis' but that's the extent of it. She knows that she has to take a ton of medications and that her prednisone makes her hungry. But the mental and emotional side effects are taking their toll, but she doesn't understand why she's feeling that way.

I must remember all of that, but it's hard. I mean how many times can she take her mattress off her bed for no apparent reason or wake up at a very unsavory hour before I loose it? Because, to be honest, I have lost it a few times and I feel guilty.

Anxiety...

So the meds, the pain, the swelling, pretty much easy to deal with (for the most part, we all have our days). With the meds, we just make sure to stay on our schedule and then we're done. The pain and swelling, well there's not much we can do, but a rice sock seems to help. The part of all this that's hard to handle is the anxiety. Siobhan hasn't gotten a full nights sleep since we saw Dr. W almost a month ago. We asked Dr. I about it and she thinks that it's anxiety. That tends to lead to sleepless nights for us too. She also started biting her nails. She went from having normal, cute 5 year old nails-aside from her thumbs which are jacked up from all the thumb sucking-to having total nubs.

Long story short, I don't really know what to do. I have no clue how to handle the nail biting. I know that people have put hot sauce or other things on nails to prevent thumb sucking but I don't think that's the answer. Since it's most likely something psychological, is it even something that I should be worried about? I don't know. The sleeping thing though, that is having an effect on basically everyone in the family. Carson and I take turns going downstairs to talk her back into going to sleep or letting her know that she can't sleep with us. When she cries, it wakes up Audrey. When she comes up to our room, she wakes up Ethan. Really, the only one immune to it all is Mr. Will because he can sleep through a bomb going off. Anyway, when you think about her not sleeping, a compromised immune system as a result of prednisone, and the fact that we've been sharing some sort of coughing sickness and we have a very unhappy (coughing) camper.

I don't know what to do....

We've tried a few things. Last night I did some yoga with her after a friend of ours, who has an auto-immune disease as a result of a botched H1N1 shot, told us that it has really helped him. So we tried, but there was a lot of yoga poses that she couldn't do because of her stiff knee (Child's Pose, the frog one). But there are a lot of yoga with kids videos on youtube. We also did some stretching which was nice. After that we did a massage and then to bed. Last night was better. Tonight, we didn't have time for Yoga and stretching as we were finishing up chores, but we did do a back rub which calmed her down. If it works, we'll go with that for a while.

Let's Move Together...

We're very excited because this Saturday, June 4th, our family is going to participate in the 2011 Arthritis Walk! It's totally short notice, but if anyone who reads this and lives in Utah wants to walk with us, let me know. Of course this is a fundraising walk so there's also the option for people to donate if they wish. I'm not the type of person who would go an solicit donations from people personally (I don't want to be that person) but I did want to let people know that it is an option and if they chose to donate, I wanted to let them know how to do it. Visit this link to the Arthritis Walk-Salt Lake City. There you will find two main options-to 'sing up' or 'donate'. If you choose the sign up option, it walks you through the process of joining our team. If you choose the donation button, there are a few options. Choose the button that says 'donate to a team'. Then just scroll down to find the team called 'Mitchell Family' with Meghan Mitchell as the team captain. At this point, I'm not going to ask anyone individually for donations and I won't be offended if you don't, I just wanted to put it out there.

So why is this so important to us? Well, there are obvious reasons. The other reason is in regards to some sad numbers that I read about. While this walk is for everyone with all forms of arthritis, did you know that there are 300,000 children affected by the Juvenile forms of arthritis? But guess how much money the government spends on JA research.....$9.8 million. That may seem like a lot, but that only works out to $32 a child-that would cover one copay for us to visit the rheumatologist with $2 to spare. So obviously, every little bit helps. This is a disease that has no cure, but wouldn't it be cool if one came along?

Anyway, moving on....Siobhan's been on the prednisone for a few days now and we're really starting to see the side effects. Some are easier to handle than others, but the one that makes me smile is now hungry she is! This girls is hungry all.the.time! The other day for lunch, she ate and entire grilled cheese sandwich, a whole grapefruit, and a bunch of milk. For those who don't know Siobhan like I do, that's a lot of food for her to eat for lunch! Today, she ate every bite of her happy meal a ton of my salad from Costa Vida, an apple, and various other snacks. When we saw Kung Fu Panda 2, she was chowing down on the popcorn that grandpa got. Such a drastic change.

Maybe I Should Have Been a Nurse...

Yesterday, Siobhan and I made the trip up to the University of Utah to Primary Children's Hospital where I was taught how to give Siobhan her weekly shots of methotrexate. Siobhan was very nervous which I can't blame her for-nobody likes getting shots let alone one every single week. I was nervous but I have to say, I did a good job of hiding it because I knew it would make it worse for her if I had an issue. I made sure to ask a lot of questions so that I knew everything I needed to know. The nurse who taught me was pretty awesome and did a great job of teaching me. People have suggested that we just go and have a nurse at the dr's office do it for us or having someone else come and do it, and while that's a good idea, I feel that it will be easier for Siobhan if it's Carson or me doing it rather than a stranger.

Well, after the training, I gave Siobhan her first shot and I did a very good job. Not trying to brag-I promise-it just felt good that I'm able to do this for Siobhan and I'm able to do it well. If it weren't for all the blood and bad/sad things, maybe I could have been a good nurse.

In other news, we started Siobhan on the Prednisone on Thursday as well. We haven't really noticed any bad side effects so far. She does have a bigger appetite which we expected and she seems to be really intense. All in all, nothing we can't handle. And today she complained about her ankle hurting for the the first time and was limping which made me sad. But we did do something fun! This morning while Audrey was at a birthday party Siobhan and I decorated her box of 'Secret Weapons'. The sequins and glue were flying so you know we had a good time!

So proud of her work

Mr. Will tried to help!

A work in progress-the finished product is so cute! But I didn't get a picture.

Steroids and Secret Weapons...Hooray!...

We went to the rheumatologist today. It was a very long appointment but it was very informative. Our doctor, Dr. I, is awesome! She's a lovely woman with a wonderful bedside manner. She's also very up front and I like that a lot.

After a thorough evaluation of Siobhan's joints, she confirmed and diagnosis and let us know where we need to go from here. Siobhan has Oligoarthritis but is on the borderline of having Ployarthritis-the only thing that separates the two is the number of joints involved and the cut-off is pretty arbitrary.

Anyway, our treatment plan is going to be very involved for the first little while until we figure out what works best for Siobhan. She's going to keep taking her Naprosyn like we've been doing twice a day. To that, we're adding Prednisone but that is going to be tapered off over the course of about six weeks. And finally, Siobhan is going to start getting weekly injections of methotrexate which is an old school, tried and true arthritis medication. So tomorrow, Siobhan I get to go back to Primary Children's Hospital for a crash course of how to give her shots. This is all aggressive of course and there's a reason for that. Some 'markers' in her blood are elevated which indicates that the arthritis is technically all through her body. We're attacking her current symptoms now so that we can stop the JIA from going to other joints.

During the appointment, we got a lot of answers to the many questions that we've had. We don't need to put Siobhan on a special diet, but we may still load up our pantry and fridge with super healthy stuff, because it can't hurt, right? We don't need to limit her activity, just let her take the lead. Also, the sleeping thing, which I'm not sure I've blogged about, the doctor thinks is more anxiety than anything else. So we're trying to come up with some ways to combat that. Also, the ANA test that I talked about yesterday, totally Negative which is awesome!!!! That means that her risk of getting Uveitis go waaaaaayyyyy down! Hooray! So those beautiful eyes are going to stay that way!

After the doctor, we put a movie on in the car and one of the previews talked about a 'secret weapon'. Siobhan was asking what a weapon is so we gave a few examples and one of them was when you're sick, medicine is your secret weapon to make you better. She then said, 'So maybe my medicine for my knees is my secret weapon to make my knees feel better!' We then decided that since Siobhan is going to have a lot of different meds and supplements, we would a get box to put it all in and we would decorate it and write 'Siobhan's Secret Weapons' on it! We're going to use these weapons to make her feel better!