Friday, January 16, 2015

Sleepy/kooky day

Reagan slept like a rock last night, so much so, she just kept sleeping this morning as well! She slept through speech therapy, but her therapist came anyway and worked on making more choice boards for her eyegaze device. We were actually this close to waking her up to get ready for her doctors appt, when she woke on her own at 11:45am! She was smiling from ear to ear, but definitely a crazy sort of smile. We got her dressed and ready to go and she almost fell back to sleep before we left 30min later. She didn't though, not until we got into the car. Her brother did her best to keep her awake, but she dozed off and slept the whole way there and through the entire appt as well. We were just going in to the orthotics place to see about ordering new elbow immobilizers as well as some knee immobilizers for her to use during weight bearing. They actually suggested a different brand than the one we currently use and said that it was something they ordered accidentally 5 yrs ago and loved them so much, they rarely ever order the other ones anymore. I'm very interested in trying them as we've been using the pediwraps brand for years. I'll be sure to post the brand info as soon as we get them as well as a review! Anyway, Reagan slept the entire appt and didn't really wake up until we were unloading her at the next stop...labs for the Stanford EPI-743 study. Her nurse just ran in with her, hoping it would be a quick process, but Reagan woke up super crazy and fought like a mad man and the phlebotomist was unable to even hit the vein! Her nurse came back out and I decided to drag Ryan in with us and give it another go. I had no idea that this lady was incompetent and obvioulsy not capable of hitting a vein. She tried two more times for a total of THREE sticks in my tiny girl's arms...she only got enough to run 2 tests (out of probably 6-8)! Ugh. We'll just wait til her next doctors appt downtown and hope for a much more experience phlebotomist next time! She did eventually settle back down and fall asleep and she slept the whole way home and didn't wake back up til around 7:30pm. She woke a little kooky though and kept escalating until she was almost in tears! A dose of oxycodone helped to settle her down and she fell back to sleep. Not really sure what's going on with her right now. It seems like she's fighting bad days...I sure hope she wins! Please keep my girl in your prayers!

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