As far as we know, Reagan slept the whole night last night. Of course, we didn't get to bed til after midnight and then I had to get up at 6am, so I've been dragging a bit today. We had a follow up appt with Reagan's immunologist bright and early this morning. Reagan had just woken up when we went to go get her out of bed this morning at 7:15am. She was a little startled looking (with big eyes and a tense body...keeping her head turned to the left for some reason) and a few times we thought we saw the fat lip, but she finally came out of it and was a content girl. Let me just say that I love Reagan's immunologist...I can't say that about some of Reagan's doctors. We don't see her a lot, but she's a very personable, intelligent doctor. We didn't have a lot to discuss, as Reagan has been healthy for quite sometime (everybody knock on wood right now). Even with the stomach flu she had a couple months ago, she recovered fairly quickly and didn't seem to have any lasting effects from it. We talked about the prophylactic Amoxicillin she's been on for over a year now and she agrees that it's probably time to take her off of it. I think we'll probably wait til we get back from our Bahamas trip to make that change, but it's definitely time. She also wanted to run some tests to look at her immune function. The last time these tests were run we found out that she had a very low immunoglobulin count (hypogammaglobulinemia) basically a suppressed immune system. Of course it would be expected that she wouldn't have immunity to any of the things she hasn't been vaccinated against (she only had vaccines at birth, 2mos, and 4mos). But a normal child who had never had vaccines, would not have an immune system with such low counts. It's obviously a result of her mitochondrial disorder (this doctor has found that many kids with mito have low immune system function). This is when she told us we need to be super careful with her...meaning no school, no church, basically not taking her anywhere that she would be exposed to large numbers of people (especially children). She said that there's always a chance that she's just a "late bloomer" and that over time, we'll see her immune system pick up (fingers crossed), but in the meantime we just have to continue to be super careful. Handwashing is key (don't forget that Daddy). Any sickness or exposure to anything (God forbid chicken pox or flu...anything along those lines), needs to be taken extremely seriously. Anyway...Reagan was awake and content the whole time we were there. When we put her in her carseat...she started to get groggy and then fell asleep. She woke when we got home (probably because our nurse accidentally set off her car alarm) and her OT was here waiting for her. She worked with her for a little while and although groggy, Reagan stayed awake. But she just kept getting sleepier and sleepier til finally she was OUT cold. She continued to sleep so we had to cancel both private therapy speech as well as speech through the school system! She was OUT! Her nurse put the pulse ox machine on her this afternoon just to monitor her O2 and heart rate and the alarm kept going off because her heart rate was dropping too LOW (an issue we never have). It was in the 70's, which is crazy low for her. I'm guessing it was a combination of her being in such a deep sleep and the fact that we've added a morning dose of clonidine. At first we thought maybe the clonidine was responsible for making her sleepy but I think it's really just her catch up sleep day. It would make sense anyway. She's more than just a little sleepy. She's out out. She slept the entire afternoon. She kept sleeping until around 8:30pm when her pulse ox started alarming...her oxygen dropped down to the low 80's. I'm not sure if she had an apnea event or if maybe she had just kicked the pulse ox probe off her toe, either way, she was awake. Big giant eyes. She's been pretty precious ever since. Hopefully she'll still sleep tonight...Mommy is a little tired after our long day!
This afternoon (right after OT).
Mike was asking me the other day why we have so many pictures of Reagan sleeping. He thinks it's because we're always thinking it might be the last time that she sleeps for a while. We have to enjoy the sleep while we can!!