Another visit to Calgary lies behind us. So far it doesn’t sound like we will be able to stop with the infusions, but joints are clean and look the best they have looked in a long time AND we can go down another mg of prednisone, 5mg a day now. Also the lowest it has been in 2 years. Hope we can get over this crucial point without any flares!
About her treatment plan…we’re playing a bit of a waiting game at the moment. What I posted in my last post isn’t current anymore!
My insurance company has denied my girl for humira and remicade but has approved orencia for her. Doc thinks humira would be the best way to go, so now we are in the process of trying to enroll her in to a compassionate program. We shall be patience and wait and see what the future brings!
Probably a good thing we have no clarity yet because we won’t be able to start before we’re halfway through November, since we have our little trip coming up! (Insurance will not cover pre existing conditions if they are not stable for the past 90 days or have had any changes in medication for this period of time…oh the joy of figuring this all out!)
A successful visit to the dentist also is in the past! Boy did she ever worry about that, but she did great and now thinks she was worried for no reason! Remember that for next time, girl, will make life a lot easier for you! (even a simple cavity can not be filled without some anti biotics in her system.)
Both kids are off to a great start of the school year. My son has to get used to the routine of junior high. Sometimes it is tricky for him to organize his brain and all the new steps and routines are hard for him, but he’s trying really hard and I’m super proud of him. My daughter is excited for her last year at this school and is already thinking about her farewell. Can’t say I’m equally excited about that, but I guess it’s all part of the process!
Volleyball season is in full swing again and both kids are involved. So far so good and I’m extremely happy my girl feels able enough to participate the way she does. Keeps me running around like the Tasmanian devil but I'm excited to be doing that! We’ll just grab what we can for as long as we can!
Ophthalmologist gave her the green light for contacts so we have set up an appointment with the optometrist to get that done. I love the way her glasses look on her, however, she has such gorgeous eyes, I believe they don’t need to be framed by them!
Next treatment in a week or 3, flu shot coming up and keeping fingers crossed the busy season will go by without flares! There was a bit of complaining about being tired and drained going on for a bit, but I’m just going to ignore that!
We’ve had a gorgeous fall so far, with temperatures high above seasonal. Now here’s to hoping the snow will stay away for a month or 3 (who am I kidding!) so the drives back and forth to Calgary will continue to be “relaxing”.
To be continued!
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