Tuesday, October 20, 2009
What a waste of a day. I hate running around and then feeling like I got nothing accomplished! We had an appointment to meet with the surgeon who will be performing Reagan's muscle biopsy to check for mitochondrial disease. He was super late. We sat in the room for over an hour before we saw anyone whatsoever. First the fellow came in, she asked some questions as to why we were having this done, yada yada yada and then she came back with the doctor. He was in the room for all of 2 minutes max! It was anti-climactic, but we were already late for aquatic therapy, so I was ready to get out of there. His secretary called me later in the day to set up a date for the surgery and she gave me a choice of two dates...both very soon. I went ahead and set it for Nov 4th, but I'm not too happy about doing it so soon. I was hoping to wait until sometime early to middle December...after we finished up with the casting. Oh well. I guess we'll do it their way. At least we'll get the results back sooner. One thing I'm not thrilled about is that they will be doing the testing on a frozen biopsy. There's a big controversy regarding mitochondrial testing on fresh vs. frozen specimens. There are actually only a few centers in the US that do the fresh specimen testing because it has to be done immediately (and apparently this is not one of them). Some doctors say that the testing done on frozen specimens isn't as accurate as when it's done on fresh specimens. I don't know. I would prefer to have it done correctly the first time, so there's no second guessing, but I guess I can't make them change their policies just for us (is that too much to ask?). So after our appointment we headed over to aquatic therapy. We were very late and Reagan would have had less than 30min in the pool, so we decided to just skip it this time. She's been a little droopy today, so it's probably better she skipped being in the pool. I talked to her therapist for a few minutes and then we headed home. It's frustrating because out of 6 scheduled aquatic therapy sessions, we've only completed 4, one of which Reagan screamed the entire time! So that was it. Only one therapy scheduled for the day and we didn't even do it! Tomorrow the schedule is jam packed and we should more than make up for the missed therapy today...hopefully Reagan will be up for it. Tonight she was running a fever of 100, but with her ongoing teething, it's so hard to tell if it's just teething or something more. Hopefully just teething. Please continue to keep her in your prayers!