Friday, August 5, 2011

Sweet, talkative, rolly girl

Reagan slept like a pro last night and woke up this morning right around 8:30am. Stretching and smiling...so nice to wake up happy! She's been a precious girl again today. Lots of smiles...talkative...but obsessed with her hand. If it's covered with a sock, it's in her mouth. If it's uncovered, it's in her hair pulling everything out. Even with the sock on, she's got it in her mouth at all times (usually trying to bite the sock off). She's super squirmy today. You can tell she wants to be on the floor rolling, when you pick her up and put her on your lap or in her chair, she just crunches in half and kicks her legs around! The only therapy she had today was speech and Reagan went to town with the cherry dum dum her therapist gave her. This girl has a sweet tooth! We started the day off with a nurse (the one filling in for our regular nurse)...and then I got a random call from the nursing agency saying that she had to leave and go into the office immediately. Something tells me they didn't have her paperwork in order (she's from out of state). Not surprising. So Reagan and I have had the whole afternoon to ourselves...which is nice except for the lifting! My back is still in bad shape, probably because I keep lifting her, but what choice do I have?!?! I spent the afternoon emailing back and forth (and finally talking over the phone) to the coordinator of the Stanford EPI-743 study (the new trial medicine for mitochondrial disease). The original dates we had been given were for the week of Oct 10th, then she offered for us to come in several weeks early during the week of Sept 26th, but that was literally the day after we get back from the Bahamas and just not an option. So we thought we'd just stick with our original date the week of Oct 10th. So all week I've been researching hotels and flights for those dates. Then today I get an email saying that the brain scan they have to do as part of the study, just won't be able to be done that week. Our options...to either come a week early (which would be only one week after we get back from the Bahamas) or come one week later. After giving it much thought, as much as I want to get her in this study and started on this med as soon as possible, it just doesn't make sense to put her through all of that traveling over such a short period of time. Not to mention, this way Mike will have 3 weeks back at work (instead of one), between the two trips. It just makes more sense. So the official dates will be Oct 19-21, with them actually starting the medicine on the 21st. We'll probably go a day or two early...Mike's company has a branch in San Jose (so he can get some business done) and we're also going to try to meet up with Zoey and her mom Heather, who has become one of my nearest and dearest friends (although I've never met her in person). So all in all, it should be a great trip. I hate to delay it, but I think this will put the least amount of stress on all of us! Here's to an unstressful, happy weekend...and sleep (it's 11:35pm and there's no sign of sleepiness with Miss Reagan).

1 comment:

The Martin Family said...

I'm so happy you guys are doing EPI-743. That's really really exciting. Sending good thoughts that travels go ok and that you see positive results.