Tuesday, August 2, 2011
We had a night nurse last night. Reagan slept off and on most of the night, but overall it did sound like she got a decent amount of sleep. We slept uninterrupted but I still woke off and on (due to my small bladder, back pain, and worrying about Reagan). She did well though. She was super quiet and cuddly last night and she's been that same way all day today. No laughs, but she's been a darling. She had another big throw up this morning (that's 3 mornings in a row now), but no real nausea to speak of. She was still moving her lips around a little (and had maybe a little more spit today) but she didn't really seem nauseous. Her hands and feet aren't cold any more but they are still a little clammy. I'm not exactly sure whether we're free and clear of the bad days or not. She's certainly been a good girl, that's for sure. She only had one therapy today, PT. We took some measurements with her AFOs on (she's 42 inches with her AFOs/shoes on) so that we can send off an application to AMBUCS for a special needs tricycle. They're pretty neat. They have ones with lots of support, straps to hold her feet on the pedals, arm braces to hold her hands on the handle bars, and even a push bar in the back so we can help her move! I think it would be pretty cool...hopefully we're able to get one for her! After PT she spent some time in her stander. She's such a good girl, we never hear a peep out of her when she's in her stander. Tomorrow we've got an early morning appt with cardiology. Even though she's had echos and EKGs (because of the mito), she's never actually had an appt with a cardiologist. Since we've discovered that she has an abnormally high heartrate, her special needs pediatrician decided it was time that we get her in to cardiology. I was told to expect a long appt! Fun. Please keep it in your prayers that our little one gets some sleep tonight and is in a decent mood for her appt tomorrow!