Yesterday was doctor day. We had 5 appointments originally scheduled, but turns out I was wrong about when Bryce's OT was, so we ended up with 4 appointments, but 3 of them up at PCMC. First up on the list was an eye doctor appointment for me. I've been battling what I've been calling stress headaches for a while now, but finally decided to have my eyes checked. I had this appointment originally scheduled for St. Patrick's Day, but got deathly ill and ended up in the doctors' office receiving IV fluids. So turns out my glasses are too strong, and that may definitely be contributing to my headaches. So I need new glasses. Then up to PCMC for kids' appointments.
Bryce was first up on the list with an eye doctor appointment. He failed his screening at school last year so I've known he's been needing a visit to the eye doc, but didn't really want to pull him out of school for it, and I needed a day when I could coordinate it with Audrey's eye doc. Bryce actually did really well - a lot better than I thought he would do. He named most of the letters correctly, and other than calling the letter V the letter Y, he did okay. But he was consistent in calling it a Y, so I think the tech understood. Audrey did pretty well too, but then she's been through this a lot more than Bryce. Right away I noticed she wasn't doing as well as Bryce, but of course the techs don't tell you anything. Normally we would have gone back out into the waiting room for an hour or so, but this time we didn't even get sat down before they were bringing us back to see the doctor. Bryce once again did really well, and doesn't need glasses. Then it was Little Miss' turn. Of course she is used to this as well, and just hops up on the chair. Dr. Hoffman still sees a little bit of inflammation in her left eye, which is where this whole dang thing started back in October LAST YEAR! Her right eye looks good, which is good news. But we just can't get this left eye completely under control. So for now she's still staying on the 2 different sets of eye drops. UGH. Then we went down to the cafeteria at PCMC, and had lunch, and since for once Dr. Hoffman was running early, we had a little bit of time and so went up and visited up at HCH. Then back down to PCMC for her rheumatologist appointment. We actually got in early there, too, which was totally unexpected.
Dr. Bohnsack said that he's not sure if he's going to increase the strength of the Remicade. He wants to talk to Dr. Hoffman about that, but it will be decided by the time she goes for her infusion next Saturday. I asked about an easier option - just going up on the methotrexate, and he said that she is pretty well maxxed out at that, and since she's having such severe nausea and vomiting with it lately, he doesn't really want to increase that and put that much more strain on her system. Another option was to increase the frequency of the Remicade, but that will end up costing us more money that we really don't have right now. She's also been complaining that the bottom of her feet hurt, and we've seen some swelling and puffiness on the balls of her feet, so he's wondering if arthritis is going into the metatarsal joints on her left foot. She also definitely has a sausage toe back again. It hasn't been that sausage-y for a while. So we're not exactly sure what is going on with her. The rest of her joints look good, and he said she has great range of motion in her left wrist where this whole dang arthritis diagnosis started. I counted them yesterday - Audrey is on 7 different medications. How said is that? She's on more medications than she is old! She's on Remicade every 8 weeks, daily folic acid, daily naproxen, methotrexate weekly, phenergran for nausea and vomiting from the methotrexate shots, and 2 different eye drops.
I'm actually tired of fighting this fight against arthritis. My hell - she's just 6 years old, and has been fighting a daily battle since she was 13 months old. Here's something sad - her 5 year diagnosis anniversary is coming up on June 23. That's also our wedding anniversary. I think I need to sign off for now before I become a little too angry at something I have no control over.