Thursday, June 12, 2008
Last night was ROUGH night. As most of you know, Reagan sleeps in a swing at night and her swing died last night. We thought it was the batteries since we go through them constantly (so much so we should own stock in Duracell and Energizer), but nope it was really dead. And this is not the first swing we've had bite the dust. It's the second. Granted, I'm sure we use it way more than intended, but still. Actually, after some research I found that the most common complaint about this swing is the motor dying out. So I guess it's not just us. Needless to say, we were up all night last night with Reagan. Unfortunately, she is very particular about this swing (the fisher price aquarium swing that goes side to side instead of front to back), so we didn't have a choice but to go today and buy the same swing. But we did buy a different version of it...one that you can plug in. Reagan has been in a much better mood today than yesterday. Go figure, no sleep doesn't bother her at all. This morning she had another great physical therapy session. I'm so happy to see her doing well and actually making some progress. Baby steps. Then this afternoon we had our appt with the new neurologist (the one from Boston). We both liked him and are in agreement about switching over to him. He just seems like he'll be more involved and aggressive in Reagan's treatment. He thinks we should give the diet another couple of weeks (to make sure that we give it a fair trial) and then if we don't see improvement we'll try vigabatrin next. As of now, we haven't seen any improvement in her seizures since the ratio change. She's still having A LOT and they've actually been particularly violent...reminiscent of the ones we saw during ACTH treatment but now her whole body twists as she does it. I don't like these at all. She did manage to take a pretty good nap late this afternoon after we got back from her doctor's appt/buying the new swing...too bad she woke up in such a rotten mood. She's been quite the fussy butt tonight. Are these teeth ever going to break through? I hope this doesn't interfere with her sleeping (at least we have a working swing). We all really need a good night's rest tonight. Please keep her in your prayers!!