There are days...and then there are days. You wake up in the morning all chipper and singing...and then it starts. Today wasn't really all that bad, but it wasn't all that great either.
William is not handling this travel well at all. He just feels rotten all the time and it seems beyond my ability to know how to manage it.
We went to the doctor this afternoon and basically blew the PA out of the water with Will's medical history. I think he was truly relieved when Dr. Crawford walked in. :) Dr. Crawford, as always, was such a gentleman. He had a visiting physician from the Netherlands with him, so he asked Will what language is spoken in the Netherlands. When Will correctly answered "Dutch", Dr. Crawford laughed and was so surprised that Will got it right. It was fun to watch. Then began the painful conversation that yes, things are progressing, but no, this brace is not coming off. When actually asked specifically, we were finally told it would likely be 9-12 months total, so it may be anywhere from December or April before it comes off. William had a hard time handling that tidbit of information. It would have been so helpful if Will could have been prepared for that information prior to this point, but no one would ever provide it when asked. It is the first time that question has been answered concretely.
Which means...that we will be traveling here every five weeks for months to come. Which means...I have no idea how we can continue doing this. We truly cannot afford it, and Will cannot constantly react to the travel or food or whatever this is.
Chatting with Erica, the nurse, we talked about the struggles Will is having with food, and she recommended an allergist. Our allergist is not at all well informed regarding autonomic dysfunction, so I asked Erica for a recommendation. Hopefully we will obtain an appointment that can coincide with our other visits here...getting answers would be really helpful. She is concerned that Will has progressed to EE (eosynophilic esophogitis) but we aren't headed going there just yet.
So begins the research to determine what our options are. If we could leave a car here, then it would mean no car rental cost. If we had an apartment, then we could cook our own food. But apartments are not cheap. There have to be answers...but right now all I have are questions.
Tonight is the Bengals' (a pro football team!) pre-season game, so Will and I are gonna watch it in our room while I peruse classified ads and check options...and maybe even knit. No really. Knit. The thing I seldom have time for but remember enjoying. :) Hopefully it will be a quiet evening with a reasonable bedtime that will produce true rest...