We're back! And an update...

We're back from the cruise! It was wonderful and very relaxing! We loved everything about it except for the sea sickness we experienced when the seas were rough (Luckily, just one night and a half day at the end). We had a tropical storm just behind us so it caused some high waves. My older daughter cried several times because it was hard for her to handle. But I would do it again in a heartbeat if I could figure out how to keep from getting sick. I am still very woozy at the moment since I feel like I'm still on the ship. (Don't like that at all and the only time I felt normal was when I was driving to and from the hospital this morning so I'm tempted to get in the car and drive all day, lol!)

We're also back on the rollercoaster, unfortunately! Her count right before the cruise was 55 so we gave her the shot on last Monday. Her count this morning was 497 and she's had the migraines again today and the last two days so we've given her Tylenol every 4 hours. Just picked up a prescription for Norco so she will take some of that again. Still waiting to see when we have an appointment with the neurologist. We're currently on 8 mcg/kg (no shot today though) and the dr is going to call the drug company to get her down to 5 mcg/kg instead of just going down to 7 mcg/kg next week. I kind of hope she gets a shot next week because she leaves for cheer camp next Wednesday.

I am guessing her labs from rheumatology were better this time around because we got a letter that just said that her labs were within acceptable limits and nothing needs to be changed at this time. I am guessing that also means we can hold off on the Plaquenil as well. I am going to call the nurse to tell her to mail me the actual labs. (I hate that they don't just do it automatically.)