He did really well. The Video Tech did have to come tell us once that they were having trouble keeping the camera on Levi because he was moving around so much, but he was in a great mood the whole time. Thank goodness for new Bear in the Big Blue House movies!
So, Wednesday I get a call from the hospital, after playing a bit of phone tag. At first, she was telling me that Levi is at increased risk for seizures and his brain waves were abnormal. So, I innocently asked "so exactly what they were in 2010 when we did this the last time?" She says, umm no. It is worse than it was in 2010. He now has an increase risk of having multiple types of seizures and they will probably be difficult to control if they can be controlled at all. Of course! Nothing with Levi is simple. Why I would think that results from his EEG would be any different...well I should know better by now! The nurse said what we have been seeing were most definitely seizure activity. Twice she said "if" and then caught herself and said, there is no "if", it is definite. They wanted us to move Levi's appointment up to May 3rd, but we would be seeing the Nurse Practitioner whom we have never met. Levi has always seen the Neurologist himself. After talking to the nurse for a bit, she said that since we will be talking about medication and a plan for Levi, she thinks it is important for us to meet with the Neurologist himself whom we are comfortable with. She checked with him and he said it was fine to wait until Levi's May 17th appointment. We were told if Levi has a seizure that concerns us, to take him to the ER.
I am more sensitive now when looking at Levi. Trying to notice if he is having seizure activity or just ignoring me is nerve wracking. I have made a seizure tip sheet for Levi's therapists that work with him at home so they have an idea of what to do if Levi has a seizure. It is hard because we have no idea what to expect with this. There are tons of different types of seizures. Hopefully, we will get more specifics at his appointment on the 17th.
In the meantime, seizure alert has been added to our contract with 4 Paws for Ability. Levi's service dog, when it begins advance training (after we reach his $13,000) will be trained in seizure alert. While it is not a skill that is promised to be perfect because it is a difficult skill to train, it is one that numerous families have experienced with their own children and it looks as if 4 Paws' track record for seizure alerting is pretty high. This could be huge since we will never know when he will have one or what type it will be.
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