Chugging Along...Slowly but Joyfully

        We had some issues with a nurse after calling and telling her, on Monday like they asked us to, that Oliver's legs were really bad being off his medications. She said, lets start the meds again wait until after your trip (we were leaving on Friday for 10 days) and we will see how he does. We were really upset. It had been almost 7 weeks and we had done everything the doctor asked us to do. Hearing"wait" again while Oliver is in pain and we were leaving on vacation for a long time did not give us any confidence in the doctor. I kept feeling God's push to call back and request a call from the doctor. I called back and asked to receive a call from her and the nurse told me it would be a few days. I was not ok with this, and after feeling that push again I called the administration and told them the story. She apologized and said she would have the doctor call me right away. She called shortly after and said she did want to get things rolling since he was doing so poorly. She opened up a day she doesn't see patients and got us in two days later on Wednesday. 

      She said because he still wasn't doing well, no improvement, she does agree that he has Juvenile Idiopathic Arthritis. She talked, explained, and taught us for 90 minutes, going over different treatment possibilities and explaining exactly what is happening in Oliver's body. In case there are other people reading this wondering what the options for treatment are I am going to list them. These are the starter treatments, there are a lot of options for treatments if these don't work but those are a bit scary.

1. Oral steroids to get this "flare" under control-lots of yucky side effects and only short term to maybe get his body back on track and he would stay on the pain meds. Once we take him off of these the flare could come right back and staying on steroids long term is not good for anyone.

2. Steroid injections- They would put him under anesthesia at the hospital (which is a bit scary)and inject steroids directly into his knee joints. This has very very low amount of side effects if any, stays in the joint and doesn't affect the rest of his body functions. The doctor has seen kids feel and look much better after just 24-48 hours after. Some get relief for almost a year but the average is 4-7 months. Though, she has had kids that don't get any relief from these, but that is few and far between. 

       We decided to start with the injections, as these are the least invasive to Oliver's body. She agreed and said she would recommend starting with the injections. If they don't work as long (only 0-3 months) they would do another set of injections and if he ended up needing it more than 3-4 times a year they would go a different treatment route. We can talk about those if they come.

      We had Oliver's injections scheduled for Monday the 28th of March at 8:30am. He can't eat for 8 hours before which was fine since it was over night. On the Thursday before his procedure was scheduled for I received a call from an admin lady that said she had put the paperwork in incorrectly and the authorization would not be ready by Monday. Of course we were bummed but what can we do? I'm learning that getting upset doesn't change anything. So, long story short, they were able to get him in with a different department, Interventional Radiology, tomorrow. We are so glad we can hopefully get some relief for him.

    We would LOVE more prayer for tomorrow as Oliver LOVES food more than most kids and can't eat after 8am. His appointment is at 3:45ish and we will get to the hospital around 2. I have been praying that God would miraculously cause Oliver not to be hungry...he gets very upset if he doesn't get to eat. Prayer for safety as he is under anesthesia and wisdom, and guidance for the doctor. Peace for Danny and I and sweet intimacy with God while we wait for Oliver to be awake.

What's Next?

           After the fevers we called the doctor on Monday because the Naproxen was not helping anymore, and I was concerned about the fevers. He called back and said we could try Meloxicam which is a different anti inflammatory. Around Thursday the Meloxicam wasn't working very well either so I called Friday morning to find out if there was anything else for him, as he was miserable.  The pediatrician called back at 5pm on Friday and said he spoke with the rheumatologist and she wanted us to race to the lab and get more bloodwork done before they closed at 6pm. She was concerned it could be something else due to the quick progression of pain and symptoms. We got that done and the pediatrician called Saturday morning to tell us the viruses they tested him for would not be back until next week but some of the more serious things came back negative. His inflammatory marker had gone down but his other one had shot up pretty high. He was ok with waiting until Tuesday when we had the appointment with the rheumatologist, and to just keep the Naproxen and Tylenol going.

        Monday Ollie seemed a little better and Tuesday he was doing better than we had seen since the start. We arrived at Children's Hospital and went into our appointment. Basically, the doctor saw him running around the exam room, playing, being silly with seemingly no swelling in his knee. We were pretty shocked but happy for the sudden healing. Because he was doing so well her thought was that it could be getting better and this was the tail end of some kind of Reactive Arthritis (when your body responds to some kind of known or unknown virus by inflaming the joints but goes away after 5-6 weeks), She wanted us to wait one more week, to make it a full 6 weeks since the start of these symptoms, and then take him completely off the Naproxen and see if it comes back or not. That week leading up to us stopping was so great! He was running and playing and the happiest we've seen him in a long time. We were so excited that this might mean he just had reactive arthritis.

     Monday morning we gave him his last dose of Naproxen. Tuesday he did great! Wednesday he was a tad stiff but still happy and not limping or swollen. When he woke up from his nap he was limping lightly but we were hoping this might be the residual from the reactive arthritis? Thursday morning he was doing great again and after nap time he was ok until about 4:30 when the limping started again, so i called rheumatology. I talked to the rheumatology nurse who spoke with Dr. Moore (Oliver's rheumatologist) and she said lets watch him over the weekend, keeping a journal of when and how bad he gets because she also thought maybe he's either on the tail end or it is coming back. Today he was limping and fussy in the morning and it was off and on until nap time. When he woke up it was swollen and he was limping really bad again. She said not to give him the Naproxen unless he has two really bad days.

      To be completely honest I really thought this would fizzle out and be over. Though deep inside me I heard God's voice telling me not to let it go. Its frustrating and upsetting. We've gotten so used to him limping and being fussy that a friend of mine actually had to remind me that limping is NOT normal. Especially in a one year old. Thinking now that this really could be a chronic disease that he has to deal with, and the yucky treatments is overwhelming and makes me mad. I haven't been mad at all until the last few days. Just extremely emotional.

     I know you all know I am a Christian, and have a deep and meaningful personal relationship with God. I am mad that in this world there is pain and sickness and sin. But STILL God is my God and my strength through this. He created the universe and the tiny atoms that make it, and everything up. He created Oliver and knows him better than we ever will and loves Him more than Danny and I could ever love him. My trust is in Him. To have a foundation that I know I can stand on, or, when I need to fall down onto, I can and He will never leave is so comforting. Please battle with us in prayer for Oliver!