Last Thursday, Cecilia and Lilly had their first EEG and MRI. The good news is that their results were normal, and now we have a good baseline for each of them as their disease progresses.
The EEG checks for seizure activity, and seizures are more prone to happen with sleep deprivation, hyperventilation, and visual stimulation. They had to be sleep deprived for their EEG test, which meant that they had to stay up till midnight the night before and then had to be woken up at 4AM. Jon took the first round. They went to a movie, then to Dave and Busters to get all the tickets, and then bowling, and finally to McDonalds for ice-cream. I woke them up at 4 and we went to Starbucks for hot chocolate and then to Walmart for a shopping adventure. Walmart at 5AM is pretty fun. I let the girls test ride bikes all over the store :)
The girls did great with each of the tests. Jon was able to be in the room with them for the MRI, and they were able to watch a show during the test. I was in the EEG with them, and other than having 25 nodes glued to their heads, they did really well going through each of the tests.
A BIG thank you to Ma who came with us to be with Zelie and for lunch afterwards, and to Mary who kept Nora and Ruthie for the day. We couldn't have done it with out you!