It's good to be home

Brandon has been telling me he really wanted a vacation.  He really hasn't had one for 2 years since he started treatment for his back and bones.  We have been talking about it and Brandon decided he wanted to see a lot of shows and hear a lot of music for his vacation.  I searched around and found the perfect solution.  Branson Missouri. I looked through the listing of shows in Branson and there was a Beach Boys tribute, a Jimmy Buffett tribute and a Beatles band hand picked by Louise Harrison.  In addition, Peter Noome from the Herman's Hermits was playing and so was Elvis Presley's cousin Jerry.  Branson was made for Brandon.  I ordered tickets early but didn't pay too much attention to where I was ordering.  Brandon added a show every few days after looking at the listing of shows.  I had some miles and hotel credits which I used and we decided we needed a car.  The big question was will we need the wheelchair.  We decided to bring it because Brandon is a little more unstable while walking since the surgery.  Imagine losing a large part of your abdominal wall.  It takes time to rebuild.

I booked a very early flight thinking we would sleep on the way up but have time for a few shows on the first day.  So we left the house at 4:00 am, left Austin at 6:30 am and arrived in Branson at 10:30 am.  I reluctantly took American Airlines.  We have had some issues when traveling with Brandon on American but I thought surely they have fixed those.  The only major issue was that Brandon's wheelchair did not make it to the exit area outside the plane in Dallas.  They said they sent it to the connecting flight.  But we had assistance to make it to the connecting flight.  We flew into Springfield which is about 45 minutes from Branson, got our car and headed to Branson.  Everything was fine in Springfield.  We had enough time once we got to Branson to get our tickets.  Lessons learned here.  Every time Brandon added a show I ordered a ticket. I wasn't paying attention to the place I was buying a ticket.  So we ended driving all over Branson picking up tickets at various ticket centers who also tried to sell us time shares and other travel items.  AND not only was that torture but we had to wait in line at each one.  I wasn't too happy.

We then headed to Million Dollar Quartet at the Welk center.  I was so happy that they had food.  Brandon and I ate.  I noticed that Brandon barely ate.  He just wouldn't.  Our tickets were first row center for the show.  I was surprised but happy that Brandon would be able to see.  The show was really good and we opted to get pictures after the show with the cast.  Brandon seemed tired and very low energy.  So we went to check into the hotel.  Once again a 25 minute line.  Brandon looked worse and started complaining that he wanted to go home.  I had seen that there was a Jimmy Buffet restaurant within wheelchair pushing distance.  Brandon really wanted to eat at his Jimmy Buffet place, but once again be barely ate.  He was whining about leaving and looked really off.  We went to the Parrottville show and once again they sat us on the front row.  It was a lively show with lots of lights, movement, people coming down from the stage with the lights and singing.  That is when I started to notice Brandon closing one eye, squinting with the other one, rubbing his eyes and through out the performance Brandon seemed to have blank stares.  I put my hands in front of his eyes during one of the stares and Brandon didn't move.  He was having seizures. We left right after the show to go back the hotel and Brandon was complaining loudly that he needed to go home (to Austin) and I needed to call his doctor.  At that point I knew why he was saying this - he was pretty miserable.  I told him I would call in the morning and see if we could move the flight.  Brandon's pupils were pinpoint, he was still squinting and he said he couldn't see anything out of his right eye.  The next morning we got up and he was up for going to the 1st show - the beach boys tribute.  He wouldn't miss it even for seizures.  Once again they put us in the front row and the show was lively with lights, movement right in front of us and around us with video.  Brandon was closing one eye, squinting, rubbing his eyes and had blank stares again.  He was complaining he needed to go home.  After the show we went back to the hotel and I spent two hours on the phone trying to move our flight.  American Express went above and beyond and got us going back the next day.  We had two more shows.  Brandon wanted to go.  The next one was the hits of the 60s.  This one by far was the one with the most lights and strobe lights.  Brandon was miserable, but hanging in there closing one eye and squinting telling me he cant see out of the right eye.  When they got to the Beatles they introduced the most recorded song of all time - yesterday.  Trying to keep thing upbeat, I turned to Brandon and said one of our favorites and Brandon burst into tears.  For any of you who know Brandon that is not normal for him.  He was tearing up through the rest of he show.  We left immediately after and went back to the hotel.  He slept for about 1 hour and then wanted to go to the Jimmy Buffet restaurant.  They knew us there and were great about getting us in and getting mama her spicy margarita.  The last show was the Liverpool Legends.  I knew Brandon would not want to miss this.  But asked him if he was sure he wanted to go.  He said yes.  We were in the front row.  This show did not have the extreme lights and had some great video from Louise Harrison with video.  Brandon was a little better for this show but still squinting some.  He wanted to get a picture afterwards and he actually sang a little and talked a little.  So he was better but still having a hard time with the lights.

I write all of this because Brandon has never had photosensitive epilepsy (https://en.wikipedia.org/wiki/Photosensitive_epilepsy) .   He has been tested for over 25 years and never a positive response.  I realized finally that Brandon was having seizures from the stage and strobe lights that were very bright and we were in the front row getting the full effect.  It was concerning because I also realized probably too late that he was having seizures as a result with each show.  So he would slowly recover and it would start over again.  I am feeling bad that I didn't recognize why he was having seizures earlier.  I thought he was having small seizures and I upped his CBD which seemed to help, but it wouldn't help with the lights.

Lessons learned here and there are a lot of them.
1.   Brandon is still not 100%, maybe 85%.
2.   Leaving at 6:30 am was probably not the best idea and may have set up Brandon being more prone to having a seizure.  One of his triggers is lack of sleep.
3.   Immediately going to a show and picking up the tickets right after landing may have also been a trigger.  Perhaps it would have been better to rest the first day and shows after a good nights sleep.
4.  For Branson - only order tickets from the theaters and pick them up before the show.
5.   Brandon appears to have a new type of seizure trigger - stage and strobe lights.  It may have been better to sit further back for these shows or only one a day if at all.
6.  I didn't take Brandon's emergency seizure med with us.  He probably could have used it.  To be honest I have never used it but have it just in case.

The flight back was fine until we got back to Austin and this time Brandon's custom wheelchair did not make it back with him.  They lost it.  They finally found it and it was still in Dallas.  This was one of the few times we really needed it.  So we had to sit at the airport for an extra hour while they looked for it and then filed a claim.  We were both so ready to get out of there.  As I drove up to our house when we finally got home (did I mention there was a wreck and we sat in traffic for a while), Brandon looked at me and said "Mom it is good to be home".  I couldn't agree more.  Brandon headed to his room, got under the covers, turned on his TV and went to sleep.  It is good to be home watching the dogs chase each other, listening to the cat meow for no reason, hearing those hee haws in the background of the donkeys waiting to be fed and hearing the faint sound of guitar music from Tony playing in the other room in the background.  Its all good and Brandon is back to his normal happy self.  More later.