Wednesday, April 28, 2010
Reagan has had a sleepy day today. Not sure why...she slept fairly well last night. Although she did wake crying and I found her laying completely uncovered in her bed. She cuddled up in our bed to warm up. Never a shortage of cuddles for this girl. No therapies today. Just a quick follow-up appt with her PM&R doc (that's physical medicine and rehabilitation). She checked out Reagan's new AFOs and I asked her for a prescription for some knee immobilizers, so we can work on standing without having to always put her in the stander. She was happy to see Reagan "still". The last time we were in Reagan's chorea was out of control and she was moving nonstop. I told her my hypothesis that the chorea is related to the strep infections she kept getting in January. It always seems flare up when she's not feeling well and it is nearly absent when she's healthy. Who knows. Always guessing with this girl. Today I did manage to get her 23hr EEG moved up to Friday. I called and they had a cancellation, so Friday it is. The sooner the better. She's still having the head twitches. I say twitches because I hope that's what they are, but in all honesty they do feel like spasms. I just hate that word. Praying that's not it. Would you pray with me? No more spasms...infantile or otherwise...period! Today I spoke with her regular epileptologist and he thinks maybe we should increase her Banzel and if we don't see improvement order an EEG (he doesn't know that we already have that lined up). Then I spoke with the new epileptologist's nurse (the one that ordered the 23hr EEG) and she said not to increase anything yet. Too bad. I already did it this morning. I guess that's the problem of dealing with two separate doctors. So far no changes other than the fact that she took a 6+hr nap this afternoon. Hopefully we can get her to sleep tonight. She's got an early appt tomorrow morning with the geneticist. Should be an interesting appt. I need my sleep. Please continue to keep Reagan in your prayers...that maybe this increase in Banzel will get rid of any potential seizures. No seizures...that's my prayer.