So much has happened since we went in to do the EEG for seizures. The actual EEG went wonderfully. Caleigh was on her best behavior. She stayed awake long enough to get that part of the test. She handled the flashing light portion and fell asleep as soon as it was done. They got great readings while she was asleep. Usually Caleigh is so angry and crying by the time they get all the sensors on her that she moves too much for them to get much. So this was perfect. Anyone that has been around Caleigh notices that she shudders some. Almost like a cold chill. We've questioned this before and did an EEG to test for Infantile Spasms back in June of '08. It came back fine and we were told it is probably sensory related. I was excited, if that's the word for it, that Caleigh actually had a few of these 'episodes' during the test. So I was interested to see if it came back as seizure activity. We managed to squeeze a little info out of the tech. All she really said is that "there was still some activity and she would let the doctor look at it." I left the appointment kinda bummed but also happy that we did the EEG now instead of in September because I would have been wondering the whole time.
Flash forward to this past Friday when I got a call from the Neuro office. Here's how the conversation went....
nurse: Mrs. Gray
nurse: hi, I'm calling to give you the results of Caleigh's EEG
nurse: it came back abnormal, there is spiking activity consistent with the possibility of seizures
me: ok, how many did she have
nurse: oh, she didn't have any seizures during the test
nurse: can you tell me what her symptoms are?
me: she isn't having any symptoms...that's why we wanted to do the test and our doctor told us that her EEG will always be abnormal
nurse: So would you like to change her medicine?
me: why? You just told me that she didn't have any seizures
nurse: yes, but if you feel like her medicine isn't working we can try something else
me: no, the whole point was to get her off the Keppra. She's already delayed and the sun sensitivity is unbearable.
nurse: so what your telling me is that you still want to wean her off the medication?
me: yes, that's what I'm saying. If she does have a seizure we will look at the options then.
nurse: OK, I'll get together with your doctor and his nurse and see what they say. Someone will call you on Monday
I got off the phone confused. Why did she want to change her med? Huh?
Super Flash Forward to today when our neuro's nurse called me. All of that confusion and wrong information led us to actually weaning Caleigh off of her seizure medicine. Bye Bye Keppra. We are going to go slow. Caleigh gets 2 ml twice a day. We are going to take away 1 ml every two weeks. This means that she will be off the med in 2 months. I am absolutely giddy inside. We are going to start in the morning. Thanks for all the prayers and well wishes...they did the trick once again! Lord don't let those seizures come back!
Friday was Eric's 29th birthday and Caleigh's 21st month. Eric and I took Caleigh to her Mimi & Pop's for the night. This was the first time that Caleigh spent the night with anyone and it was the first time we came home to an empty quiet house. We had reservations at Texas de Brazil and then went to a good friends wedding reception. Eric and I had a wonderful time. I wasn't as sad about not having Caleigh at home as I thought I would. It's probably because my body is craving sleep. Caleigh hasn't been sleeping well at all. In fact, we put her back in her crib to see if that was the problem but it didn't seem to make a difference.
The night at Mimi's wasn't any different. She was up and ready to play all night. We picked her up early Saturday morning and then stopped by our friend Jen's to visit. We made it home, had some friends over and went to bed late again only to wake up in the middle of the night with little miss thing.
Caleigh finally got that extra top tooth in. Goodbye to those precious gummy smiles. Hello to big girl grins.
Sunday was a nice relaxing day. We woke up, Eric made pancakes...yum. Caleigh and I got ready and went to our play-date at Kendall's house. Kendall, Jude & Caleigh consisted of this play group and I for one had a great time. We swapped equipment, therapy and doctor stories and played with the kids. It was nice to get out and talk to someone who understands. Caleigh is a little older than Kendall and Jude. I remember where we were at when Caleigh was their age. It's amazing how incredibly slow everything feels. The milestones come so little one by one that it feels like it will never happen. After looking back and thinking about Caleigh, I am truly amazed at how much she has done. Things still feel slow going and I'm sure that won't change anytime soon. It was nice to know that we aren't the only ones out there though. We came home to Eric cooking in his new birthday smoker and cleaning out the garage. It was a nice afternoon spent on the back porch.
Somewhere during all of this we switched Caleigh to Elecare formula instead of the Peptamen Jr. she was on. Her stool is amazing now and there seems to be a lot less of it. She hasn't been on it for a week yet but she seems to be feeling better during feeds.
Ok, so that was the weekend. Stay tuned for a great video and a little lesson on Caleigh's behavior....