Thursday, April 3, 2014

Sick house

Everyone finally got some sleep last night (thank you Lord)!! Reagan was a little restless and was awake and kicking around by 6:30am. She was sweet and previous though! This morning she had OT and then PT and did great with both. Then we went on a bit of a wild goose chase, when I got her doctors mixed up and we showed up for a ENT appt instead of neuro (in my defense they both have the same last name)! Anywho, we then drove over to the neuro's office and they were able to squeeze us in an hour after our scheduled appt! It was really just a check up but we hadn't seen him since her EEG. He actually used something along the lines of wonderful when referring to her EEG results, so that's always a good thing! I told him how well she's been doing since adding the Zofran  pre-bad days. Well, obviously we didn't knock on enough wood because tonight she had a huge throw up and spiked a 101.9 fever! She was great all afternoon, very laid back and calm. Then tonight she just seemed super sensitive and very shaky. She dozed off but then woke up and had that huge throw up (she seemed very gunky/congested...Mike and I both have had sore throats the last couple days). Then a little later, I picked her up and she was doing that fixed gaze and head turn (to the left) and I couldn't break her out of it! Finally, it seemed like forever, she snapped out of it! Not sure what that was, but I don't like the looks of it! Hopefully it was nothing or just craziness brought on by the fever. Praying she'll cool down and be able to get some sleep tonight (no nausea)! Brother is still coughing up a storm, so I hope he can stay asleep! 



4 comments:

Anonymous said...

Lurker here. .. I'm an rn in peds and with a professional interest in kids with mito issues. I enjoy your blog and learn from your daughter. I never comment but, at risk of butting in, felt I had to say that this "staring into space with head to the left" you can't break from sound like seizure activity, especially in a febrile mito kid. Perhaps you've already explOred that avenue. Regardless, thank you for your blog, it is so valuable to have things like this to help raise awareness and understand in society and in health care.

Reagan Leigh said...

Yes, thank you for your comment! I had the same feeling, but I hate to say the S word! Hopefully it was just the fever! Ironic that we were just talking with neuro about her awesome EEG! :/

Clarissa said...

Tara, Abigail has those fixed gaze, head to one side episodes as well.. only lasting a few to several seconds at a time. But her eyes get totally zoned out. I have always wondered if she has some sort of seizure activity, but her (2) EEGs have been seizure free (though "abnormal")... it has been a few years or more since her last EEG though. Anyway... hoping Reagan feels better! We have been having bad days for a couple of weeks or more now... starting to wonder what is going on here! Especially since it has been years since she has had this long of a stretch of bad days (though not as BAD as they have been in the past). Sigh!
I have been curious about the therapy Reagan gets. Can you answer me some questions? Here or email at clarissarwest@msn.com ... basically I'm wondering what kind she gets, how often, and is it paid through private insurance or medicaid? Is it through the public school district? I notice that they come to your home rather than sending Reagan away to school, and this is the option we would like, but I've heard that therapy paid through medicaid or provided through the school district can't be done in home. Anyway, thanks in advance! God bless!

Reagan Leigh said...

I'll answer it here and to your email! Reagan gets homebound school/therapy through the school system (because of her compromised immune system). That consists of 1hr twice a week with a teacher, 40min of speech therapy 4times in a 9 week period, vision therapy once a week. We also get private home health therapy (where they also come out to your house) and that goes through both our private insurance and Medicaid. With that she gets speech 3x a week, OT 3x a week, & PT 2x a week! Her therapists are also really great about working around or through her bad days as needed!