Well, the trip was long, but the company was wonderful. :) We finally arrived at the hotel around 11 last night and unpacked. Will's night meds were really late, so I knew it was gonna be a bit of a hard morning.
It was. He woke up with really low bp. He was really feeling badly, and rested on the table for the majority of the dr visit. We saw Bevery Karabin, the nurse practitioner. She was really delightful and took plenty of time with us. She confirmed the medication changes that Dr T had recently made, but warned us that Will's potassium needed to be checked regularly and sodas needed to be limited. The sodas aren't an issue since we mostly drink water, fortunately.
The rest of the visit was a lot of "code"...her trying to discuss the situation without openly discussing the situation. Basically, on the first visit, it was presumed that the autonomic dysfunction was a primary diagnosis. Thus, they weren't concerned with it being progressive (degenerate). Well, since it really is a secondary diagnosis to the primary diagnosis of mitochondria, we are back in the degenerate/progressive end of things. The very nature of mitochondria disease is that it is progressive. The huge unknown is rate of progression. She recommended we see Dr Cohen in Cleveland. We have an appt with his associate in September, so tomorrow I'll call and see how long the wait is for Dr Cohen.
Will was feeling pretty awful, so we headed back to the hotel for a little while, then got some lunch. I do believe this child is gonna turn into a hamburger or onion ring. :) He is taking every advantage of restaurants to get his favorite food on this trip! After lots of rest and some favorite food, we headed to the zoo for a brief visit. It closes at 5, so we were only going to have a couple of hours. We had purchased a membership to the National Zoo because it had a reciprocal agreement with Toledo Zoo (one of the top ten zoos in the country), so we only had to pay for parking. Woohoo!
Will got to see a polar bear swim around in the pool, find, and eat a fish. It was pretty cool to see this huge bear fishing for this itty bitty fish! (Yes, I have 5 boys so this is very cool stuff!) The other bear in the exhibit had a really red foot...it looked like he had really hurt himself. Well, come to find out, they put some food in red jello and fed it to the polar bears. The bears were apparently not fond of eating the jello, but they did like to roll in it! Blah!
We were able to ride a mini train around the African safari area which was cool, and we rode a carousel. By this point, the storms were threatening, and the zoo was preparing to close, so we headed to the car. Back to the hotel. Everything we had talked about doing was outdoors, so this put a huge damper on the plans. No swimming was possible, either. So we talked with the front desk and settled on a matinee of G-Force, 3D. ("I am like Dale Earnhart, Jr with fur!")
We are now back at the hotel, the co-op order is submitted, and I am totally ready for bed. Will has managed to read three books on this trip, so my chatty little guy is pretty quiet. When he finishes his last book, I am going to hear plenty, I'm sure! ;)
The weather tomorrow is uncertain, so we have no current plan. Having time to consider what the dr said as well as have some rest is a welcome reprieve.