Jordan had an infusion on Monday and it went really well. Daddy had to take her because I'm still unable to sit, lay or lean on anything for very long. Because of the location of the incision on my back, it's taking me a lot longer to heal then I expected.
So, Rick took J. At first she was worried that he wouldn't know what to do but I assured her it would be fine. She could call me and we wrote out things we needed to ask Dr. G. One of the big questions for J was why she was "seeing shaking." I have no idea what that means exactly but she's been complaining for a few months that she "sees shaking" once in a while and it really scares her. Turns out it's being caused by fluid in her ears. She has vertigo. She HATES it but now she knows she's OK and why it's happening. Other then that, her appointment was pretty good. She has no swelling in any joints and her labs are looking really good. She has an eye appointment in April so we'll see if doing the Remicade every 6 weeks is keeping the uveitis away. And on a little side note, she's going to be 9 a week from Friday. I can't believe it.
I have stopped taking prednisone completely. It wasn't easy but the fact that I gained 20lbs in the 18 months I was taking it made me very unhappy. In Sept/Oct '09 I was finally at my pre Jordan weight. I was miserable and I'm sure being on the high dose of methotrexate is what caused me to lose my baby weight but I was happy with the way I looked. Now, not so much. The timing of stopping the pred kinda sucked seeing how I had to go off all RA meds so I could have the mass on my back removed but it needed to be done. I was in a lot of pain and had to rely on Rick to do just about everything. I was back to taking pain meds every 5 hours. I started my Enbrel again on Monday and I can already see the swelling in my hand improve. It still hurts and I'm slow to get moving in the morning but I know in the next few weeks I'll feel like I did a month ago. I hope to start losing this weight when that happens.
My Matty is doing really good. He is officially 6 and a HALF today. I remember when that "half" was so important to me too. Now, I often forget how old I am to begin with. He can read to me and is currently reading "How to Train Your Dragon" on his own. I help him with the words he doesn't know or can't sound out but he's really reading it. When he started school this year his teacher was a little worried about him but he's caught up. I knew he would ;)
That about covers what's been going on here. Kids are great, Rick loves his job still but hates the drive and the $300 a month we're spending in gas to get him there. And just I'm here.