Tuesday, November 10, 2015
Reagan slept well last night and was still sleeping when I went for my run but she was awake by the time I got back! She was all smiles still so I was super happy to see that! Her nurse who was sick last week with strep was back today and I'm so glad that she got to see this sweetness we've been so lucky to experience the last several days! Only one therapy today, PT, but at least she was able to get in some good stretching. She recommended that we stretch Reagan's legs/feet as often as possible, just to try to get the maximum benefit from the botox last week. She definitely seemed a little sensitive to stretching, I'm not sure if that's related to the botox or not. Her therapist thinks maybe it loosened certain muscles but not others, so some are probably getting a lot more stretch than they are used to?? We did finally get a poo out of this girl today, so that was good. Then this afternoon she had her functional vision exam. Her vision therapist met us at the drs office. It was a little loud in the waiting room (the receptionists were chatting with some vendors), but thankfully Reagan was pretty laid back and it didn't seem to bother her. When they first took us back they scanned Reagan's eyes with some flashy light contraption. It took a lot of tries before it finally caught her eyes and got a reading. Then we waiting for a while longer and then went in the room with the doctor. She held up these boards with stripes on them and waited for Reagan to actually look at them. Each board had thinner and thinner (harder to see) stripes. Finally she got to the point where either Reagan couldn't see them, or was completely disinterested. Of course, when she put some corrective lenses on her, she was looking at even thinner stripes, so we think they were definitely helping her see. So...we might give glasses another try. She said they might help her a little with the finer details and also keep her eyes from fatiguing as quickly. In Houston we went to a eye glass shop that had a wonderful assortment of glasses for children, but they didn't take insurance at all, so each pair of glasses cost us about $350 (and then she rarely if ever used them)! But our friends through the internet, the Owens family, gets their kiddos glasses from this online shop, Zenni Optical where they are ridiculously cheap! $20 for the frames AND lenses!! I know, crazy! And they are all so cute! We'll definitely be looking at getting her a pair from there! Anyway, Reagan did very well with everything and then we headed home. We noticed this afternoon and tonight that her temperature regulation is a bit off. She's just a little more sweaty than she's been and her feet/hands are cooler than they've been. She also had the red ear again tonight. She was a bit spitty/chokey tonight too. I wasn't sure what to do, whether to switch her over to pedialyte or not, but since she didn't seem outright nauseous, I decided to just keep her on formula. She fell asleep laying beside Daddy but then promptly woke back up when he got up. I gave her some clonidine and she seemed to doze back off. Hoping she can stay asleep and continue with the good days!!