Let's talk about a good doctor for a change

Once again, I am reminded that those couple of years I spent tracking down a good epileptologist whom I could also work with was time well spent. We had our semi-annual neurology appointment today, and I cannot tell you how much I love this doctor. (You don't hear those words very often from me, I realize.) How can you not love a doctor who says, right off the bat, "I want to make sure to get you out of here in time so you can get home before the snow." Because she remembered we come from very far away and because she is thoughtful. 

She is very happy with how R. and H. are doing. She commented on how much more function she sees in R. which thrills me. She only sees the girls twice a year, so the differences stand out to her. She also only says things that she means so it is not just placating a parent. Their medicine seems to be working well, and we only need to tweak R.'s to see if we can stop these last few breakthrough seizures. 

R. and H. love her, too. Considering they both have medical trauma, that is saying something. H. is happy to talk with her and tell her the new things she is doing. R. is now comfortable enough that she can sit quietly and follow instructions rather than her panicked manic behavior that we had at first. R. even came home and tonight wanted to practice walking on her heels because the doctor had asked her to try and do that. This is the very first time she has voluntarily tried to move her body in a way that is unfamiliar to her. She even let me move her feet to show what she needed to do without shrieking. (We are a very long way from R. being able to walk on her heels, but awareness and interest will go a long way towards success.) 

I even have a social worker calling me (arranged by our doctor) in a day or two because of some of us qualifying for early Covid vaccines. I am hopeful she can help me figure out how to get an invitation. IL recently published a letter saying caregivers of people with a range of special needs, including epilepsy and cerebral palsy can get vaccinated. H. should also qualify for a vaccine because of her diagnosis and the fact she is over eighteen.

And we made it home before the snow! It was all totally worth the three hour round trip car ride we take to get there. The only thing that was missed was being able to stop and eat lunch at Panda Express which is R. and H.'s favorite fast food restaurant. We can't eat inside, and food from Panda Express is not really easy to eat in the car. Maybe by next winter, July, our next appointment, seems too much to hope for.