Friday, June 17, 2011
It's been a crazy day! I can't tell you how many times in the last 24hrs Mike told me, "We should just cancel this garage sale!" Everything turned out well though and we made it through the day. The thing that really helped us is that Reagan slept through the night! She slept from 12:30am-6am! We were definitely surprised, especially considering the mood she was in. We woke up at 6am (to start getting ready for the garage sale) and Reagan woke minutes later (I swear she can sense it when we wake up)! She was quite fussy all morning. The nurse that was filling in for us didn't get here til 9am, so that delayed us a little in getting things started. We had a pretty good turnout and just the sales at our house totaled over $400 (our neighbor had her own sale, all proceeds benefiting the UMDF, but I'm not sure just yet how much she made). We're doing it all over again tomorrow, so that should be interesting. The heat here in Houston is unbearable. I was sweating like crazy and I'm not a sweater. Reagan spent her day in the house, either sleeping or fussing/crying. She was awake when her speech therapist arrived, after only 5min or so in her arms, Reagan was OUT (the same thing happened yesterday with the therapist). She slept soundly several hours after...we may need her speech therapist to move in with us. Ever since Reagan woke up, she's been fussing and stressed. Lots of chorea. Can't sit still for a second. When I hold her or talk to her, she actually gets more upset. She is quieter in her chair...being ignored! She's had several doses now of the Propranolol. It definitely seems to lower her heart rate...but that, in itself, can be a scary thing. This afternoon when she was so sleepy, she was due for a dose but I didn't give it to her. She was already at 90-95, I was afraid it might drop too low so I waited til she woke up to give her another dose. I don't know if that's the best way to do it, but I'm so nervous about things like this ever since the methadone incident! The nurse we had today, although nice, just isn't the best fit for us. I'm not sure if she fully understood everything I was telling her (as English is not her first language) and I'm not sure about everything she told me. For instance, I forewarned her that Reagan sometimes holds her breath when she cries (then she saw it first hand, me blowing in Reagan's face to get her to breathe again). Then later she mentioned to me that while Reagan was sleeping, she stopped breathing, her sats/heart rate dropped and she was turning blue. She blew in her face and she woke back up and was fine (but fussy). Maybe that's exactly what happened. Who knows. I've just never seen Reagan do that while sleeping...ever. It's definitely a little concerning. Reagan fell asleep around 10pm about 30min after her Propranolol...time for us to follow suit! Tomorrow, Day 2 of the garage sale!