Keep it up, kid!

Wow! Another month with a SED rate of 1. I don't even know what to think of it at this point. We're down to 1/2 ml of oral Prednisone per day now (plus our Naproxen and Kineret). As an added bonus, I did an experiment and took Robby off of the iron drops he's been taking to see if his iron levels would remain normal without them and they did! Dr. H. agrees we can stay off of the iron drops as long as his iron stays normal. This is a big win because the iron makes him really constipated which I then have to try to treat with Miralax. This way we are cutting two drugs out of the equation.

I think I've finally found something to replace some of that lost feeling I was experiencing when I left my job. I've opened an Etsy store and I'm making items for babies and kids like hats and crocheted stuffed animals. I hope to expand to things for grown-ups too (hats, bags, scarfs) as well as home items and eventually pet stuff. I started out mainly crocheting, but I'm becoming more and more interested in sewing so hopefully I'll be able to expand my skills in that area. It's just a small side venture, and I really don't expect to make a living at it any time soon, but it's giving me something to focus on that's mine and that feels good. I have a little business of my own---a place to put my energies and use my creativity. I've missed that since I started the stay at home gig.

Out of sight, out of mind....

I realized today it has been four months since I've updated this blog. I think what happens is while Robby is doing well I try really hard not to think about JRA aside from dosing meds and keeping rheumy appointments. And he is doing well....really, really well! We are still charging along with SED rates of 1 or 2 each month. His iron levels are back to normal. He looks and acts healthy. Swim lessons are going great. He's all set to start preschool in the early fall. We are seeing the light at the end of the Prednisone tunnel (down to 1 ml and hopefully one more clean lab report will mean we are finished). Everything is great. I hope we can stay here for awhile. It's a nice place to be.

While he's doing well and I don't have to obsess about JRA every day, I think I still need to keep it in my mind. I feel like my job now is to help other parents in my situation. We have the Arthritis Walk coming up on May 2nd. I'm not making a team and fundraising for this one, but my husband and I will both sign up and walk in the event. Lately I've had a somewhat unique opportunity to help another mom who is where I was just over a year ago. I participate in an online forum for parents and have information about Robby's illness in my signature that follows all of my posts to this forum. I got a private message a few weeks ago from a mom with a two year old boy who is going through the diagnosis process right now and she wanted to know if she could ask me some questions. It was nice to be able to share what the process was like to get to Robby's diagnosis and to be able to answer the various questions she had. It sounds like they are dealing with Systemic Onset, but it's too soon yet to say for sure. She's supposed to keep me updated and I look forward to being a tiny part of her support system if it's needed.

It amazes me that there are 300,000 kids in the U.S. with JRA, yet when I tell people that Robby has arthritis they are amazed. I always hear two things: 1) I didn't know kids even got arthritis. 2) How did you know that was what was wrong with him? I usually tell a pretty condensed version of our diagnosis story and that seems to do the trick. I wonder what it will take for people to become aware of what our kids go through every day? I guess it's just a matter of talking about it and keeping it out there.

One is the loveliest number.....

It's so amazing to get a call from the rheumatologist's office that leaves me feeling better than I did before the call. Too often the opposite is true, but yesterday was a Good News Day. For the second month in a row, Robby's SED rate was down to one. Yes, one. For the uninitiated, the SED rate measures the amount of inflammation in Robby's body. They like to see his lower than 13. So 1 is freaking amazing! Staying at 1 over the course of two month's labs is even more amazing. The nurse said to me, "That's like no inflammation at all." So we continue to slowly taper off Prednisone--we are down from 5 ml a day to just 2.5 ml. I can only hope things continue to move in this direction. It is so heartwarming to see him feel good and do normal kid things. I love it. I am looking to start some preschooler swimming lessons for him next month. He loves the pool and I think this will be a good opportunity to get some physical activity in that is compatible with his arthritis even if it's not doing this well down the road.

I was commenting to my husband the other day about how having a sick kid drops you into some sort of a weird time warp. I feel like we've been dealing with JRA for years and years, but it was this time last year that he was in the first stages of the illness and we were trying desperately to figure out what was wrong with him. I also can't believe it's only been four and half months since we started Kineret. I give those injections like a pro now--it feels like I've always done it. It's amazing the things we can adapt to when it comes to taking care of what our kids need.

On a different note, I am happy to report that my husband and I are expecting our first child together around the beginning of August! We are so excited and happy, but at the same time I am nervous. I am trying to imagine how I will keep myself from examining every little bobble and fever this new baby might have and wondering if it's JRA. I went back and forth a good bit about whether we should even do this because I was worried about giving another kid this illness. The rheumatologist assures me sibling incidents of JRA are incredibly rare. My husband also pointed out that this child will have a different genetic cocktail (Robby's father is my ex-husband). At the end of the day, I searched my heart and realized that I wouldn't not want Robby in my life--JRA and all--and I just have to take a chance and trust that God knows what is best and will lead us to where we are meant to be.

Bring On the Good Times!

Robby is very excited about Christmas. He loves the lights on the houses, the tree, even the Advent calendar. His enthusiasm is contagious and I'm in a great mood lately. Today was a great day for other reasons. I captained a team for our local Jingle Bell Run in honor of Robby and today was race day. I am proud to say we brought together 15 team members and raised over $700 for the Arthritis Foundation of Central Ohio. That seems huge to me for my first time doing this, especially considering the economic times and time of year. Many of the group met up with us for the race and it was a really good time. I put together a cute outfit to run in and made matching scarves for Robby and I to wear. All week he kept talking excitedly about crossing the finish line and he was smiling and cheering when we went through the big inflated arch. Afterward, many of our family and friends that participated came back to the house and we grilled hot dogs and had baked potatoes and hot cocoa. It was a great group of people with lots of little kids playing together. I felt so happy to have all of those people supporting us and the Foundation. It felt really good to know people care about what we're going through.

Robby is doing so well! We started a taper on the Prednisone about a week ago and I'm expecting further taper when we see Dr. H. on Wednesday. I'll be curious to see what she says about his liver when she examines him and also to see what the labs look like. He seems so healthy right now and it's really encouraging. He has color in his face and lots more energy. It's like I'm having to learn how to parent a toddler all over again because he definitely did not have normal energy levels before. He also is showing a lot of improvement in his mobility in his knees. He can walk up and down stairs holding the handrail (had to scoot down on his bottom before), he can step up and down off of curbs without even thinking about it (before he would stop and really have to concentrate and go slowly), he's asking to be carried less, and he's running and doing more physical play. Also, when I feel his knees most of the swelling is gone. I can actually feel the bones of his knee joints again. Before it was all so swollen and puffy that you really couldn't feel the joint. He seems so much happier and it's great to see him more "normal." Hopefully the Prednisone will get all of the inflammation under control and then the Kineret will be enough to keep things in check going forward. I don't want him to have to be on steroids, but I am thankful for the success we are seeing.

I was looking at some pictures from last Christmas and it felt really weird. I was realizing it was one of the last times I took pictures of him before he got sick. I found myself staring at them and wondering if he was already in some kind of pain or was there something I should have seen? A few days after Christmas we went to visit my dad and step-mom and I can see in those pictures that he looks kind of sweaty the whole time. I remember thinking at the time he was probably coming down with something. He was better for about a week and then we went looking at houses just a few days into the new year. We went through about ten houses that day and by the time we got to the last one I knew we needed to take him home. He was flushed, felt feverish, and was just kind of listless and whiny the way little kids get when they don't feel well. Within days the first bumps of the JRA rash would appear and I would have him in an urgent care center thinking maybe it was chicken pox or measles or something. I had no idea at the time what was about to happen to us, to him. I can't believe it hasn't even been a year. I would officially call it the longest year of my life. When I look at where we are now, though--I am proud of all of us. We are managing. We are living our lives. We are not letting the disease win. We are fighting JRA and for now we are winning. And for now is really all I can ask for.

This Is What It's Like....

I've been away too long and have lots to catch up, I know. The thing on my mind today though is trying to capture a little bit of what it's like to parent a kid with JRA. At least my perspective of it which is the only one I can speak to with any authority.

We had a scheduled follow up with Dr. H yesterday. The first thing that needs to be known is these appointments are anything but routine. You go in hoping and that's all you can do. Will the labs be better? How will the exam go? There is this breath-holding waiting for the other shoe to drop that goes into these appointments. The thing is, there are never only two shoes. Oh no, in JRA land there is a limitless supply of shoes waiting to thud and deliver nasty news. In our situation, we've been trying to avoid starting Robby on Prednisone if we could. We did increase the Kinaret dose in mid-October, and labs have shown some marginal improvement, but his SED rate is still 23 and his knees and ankles are still huge and warm to the touch. So it's helping, but not enough. The icing on the cake this time was his liver seemed enlarged upon examination. That told it was time to go down the steroids road. We can't risk letting his liver get too involved and potentially damaged. We drew new labs yesterday to see if his liver enzymes are still ok and I have yet to hear back on those.

The second thing that needs to be known is JRA is relentless. It doesn't care how young or cute your kid is. It doesn't care that you keep all of your appointments and follow the doctor's protocol to the letter. It doesn't care that you are worried about how you will explain to your little boy that he may not be able to play football when he gets big because it's all he talks about. JRA does what it does and that's it. I will say that keeping all of the appointments and sticking to the treatment protocol at least gives your kid a fighting chance. It also will hopefully give you a better shot at sleeping at night knowing you are doing all you can. That is what I had to tell myself this morning. I was feeling like a failure as I gave Robby his first dose of the medication we had been working so hard to avoid. I had to stop and remember that I'm doing all I can and the course of this disease is not within my control.

The newest thing that I am struggling with (aside from excepting the introduction of Prednisone into our protocol) is wondering when he will realize he is different and how we will deal with all of that. If he doesn't achieve remission, there will come a day when he realizes that most kids don't have trouble going up and down the stairs and they don't take shots every day and get labs drawn every couple of weeks. He's going to know he is different and I don't know how that will feel to him or what will come of it. I try everything I can think of right now to give him some sense of sameness. I am taking him to the pool a lot and want to get him in swim lessons after the first of the year so that he can hopefully have a shot at swimming as a sport he can pursue. I think that will help. I'm not sure what else I can do at this point as he's still so young. I just try not to coddle him and try to keep JRA from dictating how we do things anymore than necessary. I hope it will be enough.

And an update that is long overdue: Robby's surgery in September went exceedingly smoothly. There is a great bit of medical mystery around exactly what it is that they removed from his hip. They know it wasn't malignant and they know they got it all out, but they can't definitively tell me what it was yet. I got the pathology report and it's interesting to see them talking about how they discussed his case at their departmental meeting. In the end they sent his specimen off to OSU for further analysis by their pathologists. At this point it's more to solve the science part of it than anything because I'm sleeping really well with the information I have now.

On the eve of if....

Lots of uncertainty and anxiety tonight. I should be working on some math homework, but I can't really concentrate on anything outside of what is potentially going down tomorrow. Robby is scheduled for out patient surgery in the morning for something unrelated to his JRA. He was born with a vascular malformation, a blood vessel tumor if you will, on his left hip. The medical stuff all started for him very early with blood draws and ultrasounds trying to determine exactly what this thing was. The possibilities ranged from the harmless to the horrifying. In the end, the pediatric dermatologist decided it was probably a rapidly involuting congenital hemangioma (RICH) and we decided to just monitor it to see what it would do. The picture here is from around July 2007 when Robby was 3 months old. You can see the RICH pretty well. The white looking area was a spot that would ulcerate and bleed. For the entire first year of his life I had to keep the area covered with dressings with Aquaphor on them which had to be changed two to three times a day. I also had to be very careful with the area because the slightest bump or scratch would cause it to bleed like crazy.

After he turned one, the RICH had involuted (shrunk) a good bit and had pretty normal looking skin over it, so it didn't required the dressings anymore. The dermatologist was happy with how it looked and said, unless any problems developed, we could just come back when he was two years old for follow up. In January the illness that eventually led to our JRA diagnosis started up. April was Robby's second birthday and I went into the dermatology appointment thinking it would be no big deal. I was rather surprised when the dermatologist started frowning while she was examining him. She told me, "I no longer feel like this is a RICH." She explained to me that some of the characteristics no longer indicated a RICH. There were still a couple of different things it could be but she wanted to do an ultrasound to get a look at what was going on under the surface. We had the ultrasound and I was relieved to see that the tumor was a lot smaller beneath the surface than what it was when we had our original ultrasounds in 2007. It also seemed to have a lot less blood flow going to it than it had originally. Dr. W. gave me two options: have a punch biopsy done or have the tumor removed. She explained he would be awake for the biopsy and they would cut a section off and give him a couple of stitches. After all of the labs and things we'd experienced over the previous months, I knew there was no way he was going to be able to be still enough to go through that procedure. I also had concerns with how any future "big gun" drugs we might have to give for the JRA would interact with this now unknown tumor. I opted for surgery which is scheduled for tomorrow morning.

Fast forward five months and here we are. I am still convinced that surgery is the right thing to do. We have already moved onto biologics (Kineret) for the JRA and I don't know what is yet to come. There is a slight wrinkle though. Wednesday we saw Dr. H (rheumatologist) and had Robby's regular labs drawn. She called me Thursday night to tell me his hemoglobin was down to 9.5 (under 10 is considered anemic) and his SED rate was up to 52--the highest it's been the whole time we've been monitoring it. Leaving aside my frustration that he's seeing his worst JRA labs ever after I've been inject him with daily medication for four weeks now, this meant the surgery now had a big question mark on it. Was he too anemic to safely go through with the procedure? Dr. H. wanted to talk to the surgeon. We discussed whether or not we should just wait. She didn't want to because she's thinking he is going to need a round of Prednisone to reign in the flare and give the Kineret a chance to work and she doesn't want to give him steroids until we can figure out what this thing on his hip is. She told me the thing I knew in the back of my head but didn't want to say out loud, "We have to consider the possibility that it's turned malignant and we don't know it. Steroids would just make it grow faster."

I spent most of Friday trying to get answers out of the folks at the surgeon's office. He finally called me back today and told me he is comfortable but it will ultimately be up to the anesthesiologist on duty and whether or not they feel he will be safe. I explained to him why I want to go through with it if everyone is in agreement and he felt we were doing the right thing. We are supposed to show up tomorrow morning but I don't know if we will actually get to have the surgery or not. If they won't do it, then I think I will push through with the punch biopsy so Dr. H. can get the answers she needs to make the call on starting Prednisone.

What decisions these are! It seems I am constantly called upon to make decisions so much bigger than me that they can almost overwhelm. If anyone would have told me a year ago that I would be chosing which major medication to treat my toddler son with, or deciding whether he was healthy enough to try to push through with a surgery--I would have thought they were crazy. When I first started dealing with this illness, there was a lot of "How do I know I'm doing the right thing?" I agonized over it almost to the point that I couldn't make a decision at all. Since then I've made a little peace as I've realized all I can do is try to learn as much as I can, surround us with the best doctors possible, always keep Robby's best interest in mind, and pray for the wisdom and discernment to make the best choice possible. That has taken me a long way so far, but I have to admit I am really scared about tomorrow. What if something happens? What if he ends up needing a blood transfusion and it makes him sick? What if the unspeakable happens? Will it be my fault? These are the things that race through my head as I wait for tomorrow.

We took Robby for a walk earlier today and I had a bit of a Yolanda Adams song stuck in my head and it was a bit comforting to me:

I don't have the right to give up /I don't have the right to give in/You're gonna bring me through/I'm gonna put my trust in you

And that's all I can do. I pray that God will keep my baby boy in His hands tomorrow. I pray for wisdom for the doctors and nurses who will care for him. I pray that this tumor is benign and harmless. And I pray that we can move on and find an answer for ending this JRA flare. My little guy is looking rather sickly and tired lately. I would love to find him some relief.

They said this would get easier....

We were told when we started the Kineret injections that it would get easier. Somehow he was supposed to get used to it and it would just become routine. Maybe it will at some point, but I can tell you three and a half weeks is not that point. It was getting easier for me to give the injections and then his fighting and struggling got worse. There was an incident where he got his arm free from CK and grabbed at the syringe. I pulled it away and he wasn't hurt, but he only got about 3/4 of his dose. I was not about to stick him again. There was also another evening where he was moving around so much that I had to stop, re swab an area, and pick a new site for injecting as CK couldn't get an adequate hold on him and still leave enough of the original target open for me to make an injection. It's not CK's fault at all...the kid is strong. I only tried holding him once and it was a major effort that was marginally successful at best. The stress of this really got to me last week and I broke down post-injection and cried off in my room where Robby couldn't see me. I was considering whether or not we should switch to methotrexate so we would only have to do this once per week. Then I felt like a crushing failure because I even considered that option when I've read the black box warnings and all we were talking about here was my own inability to suck it up. I cried and I finally got my wits about me enough to pray about it, "God, please give me what I need to take care of my son. Whether it's within me or somewhere else, please help me find what I need to do this."

The answer didn't come to me until the next morning. I decided to check into my health insurance coverage for home health nursing care. It turns out I have pretty good coverage for this. I am in the process now of getting authorization and seeing if I can get setup with a nurse to come out in the evenings and give the injections. I realize we will still need to be involved in the process and help with holding, etc.--but the idea of not going it alone feels comforting. It will be a relief to have some help until he gets old enough to understand and cooperate a little more.

I also learned last week that we were approved for coverage through the Ohio Health Department's Bureau for Children with Medical Handicaps. We were on the diagnostic program, but that is only six months and was set to run out on the 19th. We are now on the treatment program and will have to reapply for renewal every twelve months. This coverage picks up what the health insurance doesn't and means no more co pays for doctor's visits or prescriptions and no more bills for the 20% of labs and other procedures my insurance doesn't cover. I have incredibly generous health insurance benefits, but those little bits add up when dealing with a condition like JRA. I will take whatever help I can get. I also feel a little more relieved because it means we are in a better position to continue Robby's treatments if I should lose my job or something similar. Relief, relief, relief.

If you are a JRA parent, please make sure you check into these types of resources. If you aren't sure what is available where you live, reach out to your local chapter of the Arthritis Foundation and they will help you. Our local chapter is a great resource. I actually decided to start doing volunteer work with them to help me overcome some of the helplessness I was feeling in dealing with this disease. My first event was called Wine and Dine which took place on September 3rd. It was a great wine tasting event with food from local restaurants and a silent auction. I worked an auction table and I was really happy with the bids I was able to secure for the items. Here in a couple of weeks, I will attend a kick off meeting for December's Jingle Bell Run. I plan to be a team captain for the event. My goal is to recruit 20 team members and raise $2000 as a team. We'll see how we do. The volunteer work helps me to feel like I am actually doing something to help my son and other kids with JRA. I am also hoping to eventually meet some JRA parents as I think that would be great for me as well. Every time I hear about or see a teen with JRA who is living a fairly normal life, it makes it that much easier for me to hold onto some hope for my little guy. At the end of the day, hope is the best medicine.