So it's been almost 2 weeks since we've started weaning Kellan off his anti-seizure med, and the difference in him is amazing! He is AWAKE so much more, more ALERT when he's awake, SMILES frequently-several times a day, and COOING!! It's so nice to see his personality coming through. I admit I get a little weepy every time he gives me a big smile! He is so sweet! And he is still sleeping his 7-9 hours at night, which I hear is fairly common with Ds. Christmas night he had an 'episode' that lasted about 2 hours. I got some pretty good video of it. We sort of discovered that it seems like when he starts the head tilt we can almost elicit the seizure-like activity. He had the head tilt again yesterday and this am, but we let him be tilted, didn't try to straighten him, and it passed and he relaxed quickly. I had called the pediatrician on call Fri. night, who happened to be the one we went in to originally the first time this happened, on the off chance she thought we could come get an EEG in a timely manner. She didn't think that would happen but she wanted to call Denver to see if they wanted to re-load him on the seizure med. I told her we didn't want to do that at this point, and she agreed that was ok. She was going to see today if we could put a plan in place so that we could bring him in when he starts having one to get an EEG during it. We'll see what happens with that. I am still 95% convinced he has BPT, I just wish we could get an EEG to prove they aren't seizures, or are, if that's the case. I did find a doctor in Boston that possibly has some experience with BPT and emailed him. If I don't hear back from him I just might schedule an appt with him and catch a plane to Boston!
Christmas was very nice here. Justin's family was here, cousin and fam from WI, parents, grandparents, and my mom, dad, sister and niece all came for dinner-21 in all! I only had to do the turkeys, everyone else pitched in on the rest! It was a wonderful dinner and so nice to spend time with family we don't see very often. The really nice thing for me was that every time Kellan was hungry he and I could escape to the bedroom for some peace and quiet!
Today was my first day back at work. 12 weeks sure flys by!! I missed Kellan, but thankfully Justin was off so he brought him up at lunch for me to snuggle!
I hope everyone had a wonderful Christmas!!
One last thing-Kellan has taken to sucking his thumb the past couple weeks too!! It's sooo cute, but I really don't want him doing it!