Some Great News from Hard Work And Smart Doctors

In October of 2017, I posted a long medical post about new medical conditions Brandon will face in the future.  With every new Brandon diagnosis I usually go through the 5 stages of grief. I am usually in shock of is this real (denial).  I bug all my mom friends for info, search the internet, get with Brandon's many case managers, therapists and providers until I better understand the condition.  Sometimes I get pissed (anger) especially when physicians or providers failed to let me know about the condition earlier or failed to explain consequences from other treatments.  I start the process of coming up with the best treatment plans and lining up whatever treatment I can for Brandon to have the best life possible knowing the new diagnosis (bargaining).  Once I slow down from all of those, depression sinks in and I know I have to take care of myself to bounce out of it.  Finally I learn to accept what I cant change (acceptance), try not to spend time on those things that I don't have control over and focus on those that can make a difference or let go until I find those things that make a difference.  I really wish there wasn't as many opportunities to go through this process over the years, but have learned even as Brandon has become an adult this continues.  Last week was dedicated to checking progress concerning Brandon's scoliosis and osteoporosis diagnosis and journey and this process kicked in full gear.  

I have to give big kudos to Brandon for going along with the crazy plan we put together for him for the last 4 years without complaint. I also have to give big kudos to Dr. Sharon Hausman Cohen, Brandon's integrative medicine physician who completely changed Brandon's treatment for scoliosis and osteoporosis; added supplements; changed his diet; suggested exercises and bone building vibration.  I do trust her and so far all her recommendations have made a significant impact on Brandon's better health including her treatments during COVID.  

Brandon and I traveled to Dallas last week to check his progress of improving his osteoporosis numbers and determine whether Brandon's spine has continued to regress to the point Brandon has to have surgery.   I also wanted to check to see what we could do for pain Brandon has been experiencing in his back.  We met with Brandon's surgeon in Dallas.  

• Brandon had 3 different recommendations for surgery from 3 different surgeons.  They were all very different from each other.  We managed to take all 3 approaches to the Mayo Clinic in Minnesota for the tie breaker.  They 100% agreed with the physician in Dallas.  His name is Dr. Robert Viere.  I trust him 100%.  A little of his background.  He worked at Scottish Rite for many years and performed 100s of scoliosis surgeries on complex kids.  He left there and started his own practice.  Brandon had his foot surgery at Scottish Rite and although very complex, the results were great so we trust their expertise.  
• Brandon has been unable to have scoliosis surgery because he has such severe osteoporosis. The surgeon explained that it is like putting screws in styrofoam versus wood. Brandon took 2 years of injections of forteo to help build bone, changed his diet, added supplements to help him absorb vitamin D and to continue repairing bones.  This all to hope his scoliosis would not decline.  Brandon has been doing exercises, worked out at the Y and uses a vibration platform to help build bone.  Brandon curve is in-between 48% - 52%. 

In the last 6 months Brandon has been doing some things that made we realize he is in pain in his back. So knowing we have completed his bone building with great results from osteoporosis (very bad bone density) to osteopenia (low bone density) and that his pain level is worse, we were expecting that the surgeon would recommend we move forward with the surgery.  Brandon had an MRI to see what is going on with the spine.  To all our surprise, Brandon's scoliosis has not declined at all.  In fact, it is exactly the same as two years ago.  And he has managed to stay in the osteopenia stage rather than back in osteoporosis levels.  I love this surgeon because he will not do any surgery on Brandon unless he absolutely needs it.  So refreshing.  We will continue with Brandon's treatment and a few suggestions to add another new bone building drug and add some injections for pain.  Brandon was very happy, I was extremely happy and glad to not have to move to Dallas for a few months and Dr. Viere was pretty proud of Brandon's progress.  Finally some great news.  

I am trying to catch up on doctor visits for Brandon,  We have 2 more coming up.  One is Brandon's 2 1/2 year cancer check.    

The other is going to the pulmonologist to check Brandon's lungs.  After having COVID in June 2020 Brandon still has "COVID lungs" showing on the last scan.  His pulmonologist would like to see Brandon and hopefully we can come up with a new treatment to help clear his lungs.  The lungs don't sound that great.  Some people have asked "why have the COVID vaccine?"  Brandon and my answer is - you could be having a scan 1 year after catching COVID trying to still treat your COVID symptoms like Brandon.  This stuff is real and I don't want to see anyone of you having to go through this like he is.  Hey! Brandon got his vaccine and so did Paul.  You can too.  More later. 

Paul McCartney getting Vaccinated

Brandon getting Vaccinated