Saturday, May 1, 2010

Still miserable

Last night went about as well as it could have. Reagan cuddled in the bed with Daddy most of the night and I slept on the fold out chair. She woke once at 4am, I changed her diaper, and then she fell back to sleep and snoozed til 7:30ish. Reagan's mood continues to be poor at best. Lots of squirming, whining, fussing, crying her breath away, all of that coupled with less sleepiness makes for a rough day. We did catch a few more "events" while she was attached and then we were just itching to get out of there (although the lady that removed the leads went a little too quickly and now we're dealing with serious hair gunk). It's really difficult managing both the EEG leads AND the feeding tube, they were constantly getting tangled up. Now we're home and have one less cord to deal with but Reagan's still a crank. I'm not sure what's bothering her. Both my mom and Mike seem to think something is going on with her eyes. Lately it seems she's been very sensitive to light, keeping her eyes closed more often, and blinking a lot as if they are hurting her. I'm wondering if it could be glaucoma (a potential complication of cataract surgery which would require yet another surgery). I think we need to talk to ophthalmology first thing Monday morning to see what they say. It makes me nervous because her ophthalmologist never checks her interocular pressure...she says the "pen" they have is not very accurate and not the best way of measuring it. So I guess you'd say she chooses the do nothing method instead. It should be an interesting week. Hopefully we'll find out the results of the 23hr EEG, get Reagan in to ophthalmology, and to top it all off she's scheduled for an MRI on Thursday (her first in 2yrs). Hopefully she gets over whatever is bothering her and is feeling better by then. Please continue to keep her in your prayers...she needs them!


Anonymous said...

Glad you got the EEG over with. Those are never fun! Always praying for Reagan!
Jamie- AZ

Anonymous said...


I've been following Reagan's blog for a while (I found it linked on a family member's blog). Anyway, I remember that she had strep infections a while back, and I was wondering if she had been checked for rheumatic fever. Chorea and crying/laughing outbursts are listed in the symptoms of rheumatic fever. Hope this doesn't scare you, but I was reading about rheumatic fever - we've been dealing a lot with strep in our household lately - and when I read those symptoms Reagan popped into my head. Thanks for sharing and we are thinking of and praying for Reagan.

Another (concerned) Mother

You can find the symptoms on Mayo Clinic's website

jocalyn said...

hey. just getting caught up. i wanted to share that every time Kendall has an eeg, her eyes get very watery and light sensitive. possibly the fumes from the glue? i asked our po last time because i was worried about glaucoma (i always am!) and he said it could be...

anyway, hope she's better and you don't have one more thing to deal with. goodness!