We have been home for almost a week now. Grace's medications have been changed slightly as the seizures continue, she still has not had more than 2 clusters of seizures a day, a couple of days none and some days one. We are thinking that ultimately we will end up having to give the Ketogenic diet a try. We are set to return to St. Paul for the day on November 20 to meet with Grace's epileptologist and she will have an EEG while we are there.
The new medication she is on keeps her wide awake... we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me... I'm not sure what to do about it yet but I'm looking at some options and making some calls!
Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor's appointments for Grace here, I have several work deadlines, we'll be headed to Kevin's parents, and I think that's it, but, it is enough!
There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so "scheduled" in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom's willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don't really know how we'll explain that to Grace someday.....
I normally leave this blog to Kevin -- but several people have asked so I thought I'd include my thoughts.
Joy
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