It looks like we will be having a MRI soon and possibly an EEG. The protocol for Macayla’s experimental medication calls for MRI’s every 6 months. I had mentioned that Macayla had started doing some strange contorting in her chair where she would wrench her body and head to the right and stay there for a few seconds. I emailed a video of these episodes to our neurologist and he 
thought it might be a focal seizure (partial seizure – meaning it occurs in only one hemisphere of the brain). The other possibility may be reflux. We are waiting to hear if we will do an EEG to rule out or confirm focal seizures. Macayla is sleeping much better for now. Sometimes as much as 12 hours at night and more naps than before. But she still keeps us on our toes each day as she changes quite a bit from one day to the next. The one great thing she does still and does well is smile. She still wants to pull herself up on us when we are on the floor with her and she gives hugs. Even on the worst days, that smile can change the whole house.
thought it might be a focal seizure (partial seizure – meaning it occurs in only one hemisphere of the brain). The other possibility may be reflux. We are waiting to hear if we will do an EEG to rule out or confirm focal seizures. Macayla is sleeping much better for now. Sometimes as much as 12 hours at night and more naps than before. But she still keeps us on our toes each day as she changes quite a bit from one day to the next. The one great thing she does still and does well is smile. She still wants to pull herself up on us when we are on the floor with her and she gives hugs. Even on the worst days, that smile can change the whole house.
No comments:
Post a Comment