Monday, January 6, 2014
Reagan dozed off in my arms again last night (with the help of clonidine). The Lyrica definitely does not seem to be making her sleepy at all (unfortunately) and since starting it she's needed clonidine to help her fall asleep each night. Last night she woke up crying an hour or so after I put her in bed! It was as if she were having a nightmare! Her eyes were closed and she had this sad gasping cry! Poor thing! We weren't having much luck calming her down, but she finally settled down and fell back to sleep when Daddy laid down with her. We weren't sure what this meant for today, but I'm not going to lie, we were nervous! We woke again around 5:30am and she was awake and kicking around but OK. When I got up with her this morning, I could tell she was still very tense, but she was still in good spirits. She did FaceTime with Grandma and was grinning from ear to ear! Then maybe 20min later her nurse was asking me a few questions and Reagan freaked out! The tears were flowing! It took a while to calm her down, but we eventually did and the crisis was averted! She had an early session of speech shortly thereafter and did well with that (her speech therapist knows her well enough to not push her buttons)! Then this afternoon Grandpa came over to watch Ryan while we went to the orthotist. This orthotic place came highly recommended and the orthotist we saw seems very experienced. He was not happy with her high heeled AFOs (similar to Reagan's previous PT) and he thinks he can get her in a much better angle (much closer to 90 degrees). We'll see. Reagan was very sensitive...just taking her in and out of the car freaked her out (with the cold air hitting her face). We had to take her into an exam room because the opera music over the speakers in the waiting room was freaking her out! We also had to keep speaking to a minimum! The last thing we needed was a crying Reagan. She did fine! No casting today...apparently they need to get insurance approval first (in Houston they did this in advance and our first appt was casting). As we were leaving Reagan seemed slightly nauseous (in addition to her extreme sensitivity). I noticed this a tad last night, when she seemed a little overly spitty. I'm not sure if all of this is part of her normal cycling or a side effect of the new medication. I tried calling the neuro but apparently Dell closes at 4pm (WTH)?!?! She was very much on edge the whole way home. Very vocal with lots of crazy laughs. She held it together, but barely. She did lose it again tonight. I was on the phone with the pharmacist and thought I ran out of the room quick enough, but she heard me talking and freaked out! It took another good while before she calmed down. And then to make matters worse, the nausea really picked up tonight. Not used to seeing it before a bad cycle. I gave her clonidine hoping she'd sleep it off, but she's very restless and keeps waking back up startled and making gaggy faces! My poor sweet girl. Very sad for her and all of the kiddos out there suffering. Life is so not fair!