I think I have mentioned here before about my trials finding a neurologist that I can work with. I don't mean to be the difficult, crotchety parent. I really don't. But I am also not uneducated about my girls' syndrome, and living with them, I certainly know them better than anyone. Finding a doctor who would take me seriously, even if my thoughts were a bit off of the traditional track for standard seizure treatments was very important. And very difficult. After many phone calls, (the kind of calls where I'm sure there is now some code after my name which means "Run, don't deal with the crazy woman," in many medical data bases) I made appointments for R. and H. with a new neurologist.
I wasn't sure I was going to be entirely happy. I didn't know much about this doctor and she practiced in a suburb 45 minutes away in no traffic. On the plus side, though, one of the nurses whom I routinely work with in another office was doing some investigative work for me as well, and came up with the same name. I was guardedly hopeful.
It is with great relief that I say, I think we have found our new neurologist. I really, really liked her. She listened to me, took me seriously, was willing to think outside the box and look at the actual child, and had realistic expectations. She even had a few ideas for things no one had ever mentioned to me before. And the cherry on top? Our first appointment lasted for an hour and forty-five minutes while she took the time to go over each girl's history and as I discussed prior treatments and their results. H. liked her, too, at one point declaring, "Dr. ___ is beautiful!" The doctor likes H. as well. R. did pretty well, though like H. when she first came home, being in a doctor's office was a bit triggering and it was the more manic R. who met the doctor.
As a treat I took the girls out to lunch before the long drive home, and even better, we stopped at the grocery store as well. Going anywhere with Mom with just a couple of people is a treat for my younger children, even the grocery store. Normally, I wouldn't have needed to go to the grocery store, but life hasn't been running with its regular clockwork around here. Pretty much I can do one extra thing a day other than the general care and education of my children, fixing dinner, and throwing in laundry. If I have to do more than one extra thing, than one or more of those basics doesn't happen. Laundry is usually the first to be jettisoned, with actual meal planning and preparation coming second.
Having back-to-back days of long appointments along with holiday planning, and so a quick grocery store trip was essential in order to feed the masses. (We'd been eating out of the pantry, freezer, and refrigerator for about four days already and things were running very low.) I didn't even have a list, but threw random things into the cart which looked like the things I normally buy. I'm hoping I picked-up enough randomness to make meals for the next few days.
I don't know how long it will take me to get life back under control, but it always takes longer to put back together than it does to fall apart. But, the chaos is so worth it to know that Y. is OK, and to have a good neurologist in our corner for H. and R.