April 18, 2008

Sadie has had a couple of hard weeks. Starting around the first week of the month she started having some swelling in her ankle again and was showing more signs that she was in pain. She was limping more, slowing down and the swelling was obvious to even other people. Then she started sharing with us how much pain she was in and that it was bothering her pretty much every day. There was even one day she could not get out of bed (this is a first!). She has been having some shooting pains from her ankle up her leg too which is new. So, we finally called the doctor because we think this is a result of pushing her Remicade out to every six weeks from every four. In addition to that we also dropped the dose of her medication and we aren’t really eager to put that back where it was, so the first step is to try and get her back on the every four week plan. The doctor agreed that she needs to go back to every four weeks, so she went yesterday. We booked out her Remicade for every four weeks until October.

Remicade yesterday went very well… only took one poke, we had a great nurse and Sadie had a great spirit the entire day. Even after we came home she did better than expected (tired, but that’s usual). They did labs yesterday and her SED rate was elevated; this is a test that shows if there is “active” inflammation in your blood. Sadie has never, since the day she was diagnosed (that I can find or remember) had an elevated SED rate. It was one of the things the doctors always wondered about because it was obvious that her joints were swollen, but her labs never matched that. Seeing that her SED rate is elevated is bothersome, but nothing we can do but pray that it is a temporary thing. We see Dr. Wallace (Rheumy) the end of April and we can at that point see what she thinks about her ankle and any other joints that might be acting up.
Sadie’s little sister is sick, which all came clear during Remicade. With Remicade Sadie’s immune systems is very weak for the first few days (if not weeks) and we are concerned about Sadie catching what Syrah has. This could be a huge prayer request for us as we really want Sadie to avoid this sickness and we want Syrah well as fast as possible.