Thursday, December 4, 2014
Well, it's been a rough one. It certainly could have been a lot worse, but Reagan has not been feeling well and crying off and on all day! The "calm before the storm" rule does not lie. The only strange thing, she's continued to be very relaxed in her body and still today, just with bursts of what appears to be severe stomach pain. She's very sad and teary eyed, but awake and quiet for the most part, and then all of a sudden it will hit her and she'll just YELL out in agony! We've been able to settle her down every time (which is very uncharacteristic for a bad day), but you can tell, she's miserable. I drove down to Dell today to get the hard copy of her Lortab prescription so we could have it filled. She hasn't required round the clock pain meds, but we certainly need to have it on hand! So it appears she holding strong to this 5 day, 7 day pattern. Today is 5 days since her last bad streak (which started on Sat). You would think with her cycles being so predictable, like clockwork, that they'd be able to figure out what this is!?!? I know everyone wants to just put it off to unspecified mito pain, but there's got to be something going on internally that causes her to have this pain on such a regular basis. Why can't anyone figure this out?!?! So frustrating. And the worst part is not knowing what kind of pain it is! Where is it hurting? If we knew exactly what was hurting, maybe we could better help her manage the pain! Ugh. That's why getting her to use the eye gaze is so HUGE! She could actually tell us what was hurting her! That would be amazing! Which brings me to some super awesome news we got today! It's been almost a year that we've been trying to get the Tobii eyegaze device for Reagan. We had a loaner, they took it back, they dropped the ball in the paperwork process and brought us another loaner which we've had ever since (and we think they've forgotten about because they would have wanted it back sooner). Anyway, this past week I've been following up with Medicaid about it as well as the people at Tobii...and today is was finally approved! So Reagan will be getting her very own eyegaze device! This is great news, especially since they already incorporated it into her IEP at school and her therapists have been using it a lot as well! Such a relief! And such hope...that one day she will be able to communicate her needs to us!