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.

Just When I Thought It Safe...

So much for injection getting easier. Tonight was supposed to be Right Arm night. The original hold CK had Robby in made his arm too tight to his body for me to get a good pinch to put the needle in so I asked him to adjust. Robby was pretty worked up and as soon as the needle went in, he tried to pull away and it popped back out. A fat drop of blood welled up and I just stood there feeling dumb. I wasn't sure what to do. I hadn't really had a chance to administer any of the medicine. I wasn't sure if I could re-inject with the same needle. In my haze, I laid the syringe down and the needle made contact with the table. Well at least that settled that...a new dose had to be drawn up. Of course now that Robby knew what was up he screamed the whole time I was prepping the new dose. I mean he really screamed--like we were beating him or something. The windows were open and I became absolutely certain someone was going to call the cops or children services or someone. I would have welcomed either one if they were willing to give him the shot...(sigh). We decided arms are just too hard and we are going to have to figure out how to get by with just thighs for awhile. At least until he quits fighting us.

I was able to inject in the right thigh with minimal fuss aside from a massive amount of crying. The sticker trick worked again to calm him down. Once he was situated and reading a book with CK, I had to leave the room. I was too shaken up. I went in my room and felt like I was going to cry but I laid down on the bed for a minute and it passed. I came back out and held Robby for a little while and read him a book. Then it was time to get ready for bed.

What an evening.

It's getting easier...

The Kineret injections are getting easier as we go. Mainly, we are developing a routine which helps us all adjust to this new aspect of our lives. The rundown:

While we are preparing dinner, we lay the Kineret syringe out on the counter so it can come to room temperature. The literature says it can be at room temperature for up to twelve hours. Ours ends up being out for about two at the most. When it is time to prep the injection, one of us will take Robby into the living room and read him a book. The other will get the injection ready out of sight in the kitchen. The key is to minimize what he sees ahead of time so he has as little time to anticipate and be anxious as possible. Once we start to take him to the table he knows what is happening and starts to say "No!" and cry. It's not as bad as before though. He cries pretty loudly while he is getting the shot, but he is really interested in the Spider Man band-aid so that is step one of the distraction. We also bought a notebook with Cars characters on the cover and some stickers. Once the shot is over, he gets to pick out a sticker and put it in the notebook. Tonight he was done crying by the time the sticker was placed in the notebook. Pretty big improvement over where we started.

It is getting easier for me, too. The very first time I injected him, I felt queasy leading up to it. I felt very calm during--but as soon as I was finished I started to shake. The second time I didn't get that sick feeling before, just the shakes after. Now I am fine. Seeing him recover quickly helps. So does seeing how much the Kineret seems to be helping him already. I really feel in my heart like we are doing the right thing.

We did it!

Yesterday was the big day. My husband and I went into Children's to get our education on giving Robby the Kineret injections. I was a little surprised when the nurse told me that we would be giving him his first injection, but it made sense that she needed to see us do it to make sure we were placing it properly and that we could actually go through with it. I decided to give him the first shot. After all of the instructions and practice, I drew up the dose, CK (my husband) got Robby in the hold like the nurse instructed, and Robby started to cry a little. I counted to three and poked him with the needle. I was a little surprised at how easily it went into his skin. The only thing I need to do differently is to push the plunger down faster. I was a little slow with it (thinking the medicine might not sting as badly if I didn't push it in fast) and he started to squirm a bit which creates potential for the needle to pop out of his skin or injure him. So I will go faster next time. As soon as I set the empty syringe down, I started to shake--but I was relieved that it wasn't as bad as I thought it would be. We can do this! I know in a few short weeks it will all seem routine and not a big deal at all. I am also happy to report there is zero injection site reaction so far. All I could see this morning was a tiny pink dot where he got poked. Fingers crossed that this stays the case.

I started telling Robby on Wednesday that we were going to the doctor the next day to get a new medicine that would make his knees feel better. He was really excited. I waited until Thursday morning to tell him it was going to be a shot. He kind of frowned, but I told him it would be a little shot and he seemed OK. Last night he was talking to me about how the shot hurt and I finally decided to tell him we would have to do it every day. He was upset about it, but I reminded him that this was to make his knees better so he can walk around and play. I told him it was a little scary for me too, but we needed to be really brave for each other. He sighed a little and then smiled at me and said, "OK, mommy. I be brave." My heart ached that a two year old has to deal with these things. I am so proud of him though. He has handled everything so well. We plan to get him his own special calendar and stickers so that he can put a sticker in the box after each shot. He seems to really like the stickers they give him at the hospital, so I think this will help. Plus picking one out will give him something immediate to take his mind off of the shot he just received.

I know it has to be too soon for the medicine to be working, but he was able to walk right after waking up this morning. I think it's because he had ice packs yesterday afternoon and a bath before bedtime. I also think maybe all the talk about how this new medicine is going to make him better has him believing it is (or at least will) and he is brave enough to try even through the pain. It was kind of amusing last night--his toys were everywhere! I wasn't used to it after these days of his not being able to walk and not really playing. CK said he was happy that Robby was well enough to make a mess. I agree!

Why Us?

I am over the moon this morning. Last night I was feeling a lot of despair and frustration after going through a day of Robby not being able to walk. I was having trouble sleeping last night and felt like all of my coping mechanisms were broken. I finally remembered to do what I should have done in the first place--pray! I prayed for a little bit of something. One positive thing to help us get through this. That's all I needed. Well, this morning Robby was able to walk again. It's stiff and very wobbly and I can tell it hurts, but he's doing it. He was so excited! He wobbled across the living room to his toy box and he smiled at me and said, "Look, I'm doing it by myself!" Words can't explain the joy that came from those dozen or so stiff legged steps. I am so grateful. I explained to him that he has to keep trying really hard to walk even though it hurts because it will help his legs feel better. He seemed to understand and he told me, "OK, mommy. I try really hard." What a sweet boy.

On the drive to work this morning, I was thinking a lot about how things were early on and I have something I want to share. My hope is that it will help someone who is going through this. When we initially got the diagnosis, I was overcome with relief. There were moments where I feared we were dealing with something worse than JRA--something potentially terminal like leukemia. It was a huge relief to finally have a name for his illness and to learn it was "only arthritis." As the reality of living with JRA set in, and I learned more about what the long term picture might look like, relief gave way to a mixture of anger and grief. I had to mourn my previously healthy son. I had to consider the possibility that he might never be able to do certain things and that he might be in some amount of pain every day for the rest of his life. I had to accept that our new life was one of doctor's visits, blood draws, and constant vigilance. I can still remember the day Dr. H. handed me a pamphlet from the state's Bureau for Children with Medical Handicaps. My initial reaction was, "This isn't my kid!" Later that night I read through the materials and I realized this was my reality. This was my kid now. That was the first time I can remember thinking, "Why is this happening to us?"

I was angry and I wanted some explanation for why this should happen to my easy going sweet boy. Why should this happen to our family? The first phase of an answer was, "Why not us?" I came to realize that nobody deserves these things, but they happen. We aren't special or somehow immune against disaster. I finally embraced the idea that God doesn't promise life will be easy and bad things will never happen, only that we won't be alone when we go through the hard times. This got me through for a little while, but at some point it wasn't enough.

The real breakthrough came for me when I realized this was happening because I can handle it. I have overcome some really deep dark pits of adversity in my life and am as strong as they come. I also have the resources to provide the care that is needed (financial, insurance, generous leave benefits from my job, etc.). I have the ability to research and learn about my son's condition so that I can better help him. I also am a fighter and know I will be able to stand in the gap and be an advocate for my son whenever it might be needed.

I even found myself, for the first time ever, thanking God and praising Him for my experiences dealing with my own illness. For two years I've struggled with ulcerative colitis. It's pretty well under control for the time being, but I feel I have an understanding of pain, and the cyclical and unpredictable nature of chronic illness, that a lot of people who have never dealt with it first hand can't have. I know what it takes to keep living your daily life inspite of pain and disease. I know the determination that is required. I also know the courage it takes to even try. That is why I consider one of my greatest responsibilities to be teaching Robby how to live with this disease and still have as full a life as possible. I have to give him the confidence to try as hard as he can despite the pain. The doctors can give him the treatment and drugs--but it is up to me to give him the guts to deal with all of this. In the moments where my head is on straight and I can see these things clearly, I realize what an honor and privilege it is to be entrusted with this little boy who needs so much. I try to cling to this when I am in the dark moments. It's not always easy, but the light does come eventually.

What next?

The kineret arrived and is safely stored in the refrigerator. It turns out Robby needed to have a chest x-ray and TB test before he can start the kineret. I took him in for those this morning. The TB test needs 48 hours to develop, so we will have our injection training on Thursday morning and he will receive his first dose then. I hope with all my heart that it works well and quickly. I know it can take a month, or maybe longer, but I pray we'll see good results as quickly as possible.

"I can't walk. I can't walk." was the phrase that just about ripped my heart out this evening. Robby spent the day refusing to take more than two or three steps, if any. He would just give up and try to sit down on the floor. The pain has to be pretty great because he would start to cry and try to grab onto something as soon as I would stand him up. Also, he wouldn't even walk or stand to play with the other kids at the baby sitter's house today which definitely means he was feeling really bad. Usually he can get distracted enough with play to get around at least a little bit. My emotions are all over the place. I feel so sorry for him and upset that he has to feel like this. It is also very frustrating and draining taking care of him when he can't stand or walk. He is 34 pounds now so carrying him is no small task. It also makes all the little things like changing clothes or getting in the car complicated. I alternate between hope that the kineret will work quickly and fear that he'll be like this long term. How will I take care of him if he can't walk? I know people do it all the time, but I wasn't mentally prepared for him to be disabled to the point of impaired mobility.

It seems I keep reaching the point where I feel I can't take anymore. Then I take a deep breath, square my shoulders, and realize I have an important job to do. I soldier through with plenty of prayer and help from my husband and other family and friends to encourage me. Then something else happens and I find myself all crumpled up and back at square one again. I keep wondering what else can happen and I dread ever knowing the answer.

Relief!

The kineret will be delivered tomorrow. I don't know how they did it, but the wonderful folks at Dr. H's office made this happen so fast. They really are amazing. I just need to get in touch with them this afternoon to find out when we can go in to get our instructions on giving the injections. Thank God for small miracles!