The All Good News Post

Brandon and I had a nice reprieve of not thinking about or seeing doctors for  few weeks thanks to Sir Paul McCartney.  I am just giving a short overview of our day to feel like rock stars.  I wrote an email to ask whomever would listen to give Brandon the opportunity to meet Paul McCartney.  Many people gave me suggestions as I sent this email out on who I should contact and I have to give thanks to each of you who lobbied for Brandon, giving me suggestions and pointing me in the right direction.  The email ended up being sent to Paul's company with a "not promising anything but at least getting it in the right place".  The news that Brandon was finally going to meet Paul came when we probably needed the most - at the airport coming back from our last of all the specialist's appointments.  I was so tired I just wanted to get on the plane so I could take a nap.  Brandon had already taken a nap in the airport and the doctor's office.  Thanks to Peggy for driving us a around that day.  At the airport I decided to look over my email when I saw an email from Paul's charity offering Brandon a private meet and greet with Sir Paul at ACL.  When I told Brandon he started squealing and saying he could not believe he was going to meet Paul McCartney.  That woke us up to get on the plane and home.  

Brandon at the airport

We received an email the next week explaining the location of the tickets and packets for backstage passes.  The team offered back stage passes for Rush Evans (Off the Beatle Path) as well who is the biggest Beatles fan as Brandon. Tony who was with is for the evening also received backstage passes.  It was good to have both of them there because backstage can be a little challenging for person who cant see down very well and is not great walking on uneven surfaces.  But those challenges did not slow down Brandon.  The day before the event Michele from Paul's team (who has been with him 28 years) contacted us about how we were getting to the concert, what time etc.  After talking to her and explaining we may have to use the wheelchair to get Brandon around ACL (if you have gone to ACL you know that is a little tricky).  She offered to have a car sent for us and to drive us right to the Paul McCartney backstage area.  It was a relief for me.  The day of the concert the car showed up to pick us up with Albert our driver (sweet guy) who had our passes and extra tickets we gave to Brandon's aides.  He drove us right to the area where Paul was set up.  

Brandon and Rush

We had shirts made here in Dripping Springs for Brandon by Emily Heckmann Konkle .  Love them.  

 Michele greeted us and showed us to the backstage AC lounge where there were drinks and snacks.  We wanted to go out front to see David Byrne.  The staff helped us through the maze and Brandon was able to sit in the disability section right up front.  Great show.  We went back to the lounge after his set.  Rush was able to meet many of the musicians hanging out in the back, but Brandon, Tony and I hung in the lounge in the AC.  It was pretty hot and I wanted to preserve some of Brandon's energy.  We met the whole horn section who were so nice to Brandon asking him about his love of Paul and the Beatles.  During the show they all turned to him and gave him the thumbs up and one of them came up to check to see if Brandon was loving the show - he was.  

The horn section 

About 15 minutes before Paul was about to perform they took everyone back stage to a balcony on stage right above the band.  It was the most amazing view of the show and looking out at 80,000 Austin fans cheering on Paul.  They took Brandon and me to a private area to meeting Paul.  Brandon had a ukulele that our friend Scott Fredrick put the Egypt Station art on it and Brandon handed it to Paul.  Paul immediately started playing the song he wrote "Dance Tonight" on the ukulele and singing it.  Brandon and I danced to it.

When he was done Brandon told him that he "has been listening to his music all his life".  He also told him that he listens to the Beatles radio show on Sirius XM everyday.  Paul looked at me and I said he likes to hear the stories that Paul and the others talk about on the show.  Paul said to Brandon well I have a lot of stories I am going to tell tonight.  Brandon smiled.  Brandon then told Paul that his music makes him happy.  Lots of hugs.  Brandon asked Paul why he added the horn section and Paul said - I thought it would be nice to have something different on this tour.  Brandon was excited.  Then we took pictures.  Lots of hugs.  Someone handed Brandon a set list and we headed to the balcony.  It took both Michele and me helping to get Brandon all the way up the stairs but Brandon wasn't going to let that make him miss the concert.  On the balcony there was one chair for Brandon so he could sit when he needed to.  He sat a few times that night but he tried to stand for almost the whole concert over 2 hours.  Brandon has been showing signs that his back is hurting and standing is one that we can tell put pressure on the back.  But he didn't want to miss a thing.

The show was fabulous with Paul singing a mix of Beatles, wings and his new album.  When the show ended Brandon almost fell over the side trying to waive at Paul as he walked under the balcony.  Then the band came out for an encore and as they were leaving for the final time Paul stopped and pointed at Brandon then blew him a big kiss.  Brandon was beside himself and almost frozen with excitement.

 

A rock star kind of night.  Paul's staff couldn't have been nicer. Paul McCartney talked directly to Brandon and interacted with him and Brandon was very engaged.  I think we will have some great pictures from Paul's photographer.  We should be receiving soon (if we ever get mail in he mailbox - been flooded out here so we haven't received mail for at least  week).

Brandon is still on the Paul high and walking around saying Paul McCartney about every 10 minutes.  What a great guy Sir Paul is.  Our night to live like a rock star is something Brandon and I will never forgot for many reasons.  I will leave you with one pretty magical moment of the night from our view.  Paul singing Hey Jude with all of Austin from Rush's video with over 95,000 views.  It is pretty awesome.  Thank you Paul McCartney for being so kind to my son and making his dream of meeting you come true.  

Austin City Limits Paul McCartney singing Hey Jude

I am still trying to be on that Paul high, but I also have been working very hard to better understand the recommendations for Brandon as we receive more information concerning his treatment.  AND there is good news as this is only a good news post.

• Brandon cleared all the heart tests.  His heart can take a very long surgery
• We found out this week that he is not predisposed to blood clots via some genetic tests that we have received and that is important for this surgery.   
• We also received good news on Brandon's foot.  The structure is still good, he does have arthritis and osteoporosis in the foot but that is to be expected given his history and the fact that the foot has been operated on.  We also found an Austin doctor to see in the event he has any other feet issues. 
• In the last two weeks I have talked to the two scoliosis surgeons we are considering for Brandon's surgery.  I haven't made a final decision but I have ruled out the doctor in Austin solely because the other two surgeons have done many more surgeries on this complex population and seem to really understand what will be needed moving forward.  Based on my extensive conversations with the surgeons in Dallas and Houston I better understand why they both have different plans.  I am leaning towards one surgeon but am still reviewing their recommendations.  I am really relived that we are closer to making a decision for treatment.  
• We have received a new set of genomic information (133 pages) that I am reviewing now that has a great deal of information both positive and some explain some of Brandon's bone and spine issues.  More on this in the next post.  Trying to keep it positive here.   
• We are changing Brandon's medications slightly based on our visit with Dr. Sharen Hausman- Cohen (Brandon's integral medicine doctor) and his neurologist.  Brandon seems to be doing very well on the supplements and the CBD oil.  

That is enough for now.  I will go over the options for surgery and hoping that if any of you are trying to choose options for you or your loved one that it helps a little.  

Lastly - as Brandon says - All you Need is Love.  

Thanks to all of you that followed us as we were meeting Paul and the positive thoughts.  I read each message to Brandon and he loved them.  More later.  

Leah