Enough COVID - Brandon approved

It finally happened.  Brandon has had enough of this COVID thang.  Brandon said no more news about COVID.  If it comes on the TV or the radio, he wants it turned off.  I don't blame him, I feel the same way.  It means for Brandon that he still is not back at work, and I think that is really wearing on him.  It seems like it will never go away.  We have tried to make the best of it by staying vaccinated, wearing masks inside as this new strain spreads.  Brandon goes through masks about every 15 minutes, so I take a large supply when we are out.    

This last weekend Brandon ran out of Epidiolex (the CBD oil through prescription).  I didn't know we were out until Saturday.  But I couldn't get it refilled until Monday.  To cover Brandon through the weekend we used Charlotte's Web.  Normally that would be okay because the dosage and the strength are fairly similar.  Apparently, in reality it is not the same.  We found 3 additional doses on Monday, so Brandon only missed 2 doses on Sunday.  That was enough to really affect him.  He has been sad and weepy ever since.  A lesson for mom - don't miss any CBD doses.  Feel free to send him happy messages on Facebook as he is upstairs as I write this snuggled up in bed, watching old movies and saying he is sad. Sometimes we all just need a few days in bed.  

This was not a great week for Brandon to not be 100%.  Brandon and I want to kick 2021 down the road and lead on to a "fab 2022".  I haven't taken you all on the roller-coaster ride we have been on for the last 6 months.  But will be glad to get this behind us.  

In July, Brandon had a cat scan done to check his COVID lungs.  I am glad to say the groundglass opacities that are related to COVID have greatly improved based on this last scan.  But noted on the scan was nodular contour liver parenchyma.  The results had a recommendation that Brandon get tested for liver function to see if there is any evidence of liver damage.  Brandon was tested and the direct tests for liver were okay, but some other blood tests were off.  Because the scan indicated nodules, I sent the test to MD Anderson to review.  Brandon's cancer could spread from the stomach to either the lungs or the liver.  MD Anderson has been watching these areas closely for possible spread. After their review, MD Anderson wanted to do a specific liver scan.  We went back to MD Anderson in October.  Everyone was thinking that we probably would not find anything on the scan.  The good news is there was no cancer detected on the liver, but the scan came back suggesting that Brandon has cirrhosis of the liver.  MD Anderson wanted Brandon to find a good GI doctor to really review the records and determine whether this is a correct diagnosis.  We found a good GI doctor who specializes in the liver.  They ran more blood tests and stool samples.  The liver tests again came out fine, but more tests came out with some abnormal results.  Some could be related to the liver.  So, this week Brandon went in for a fibro-scan to determine if there is liver damage.  And this morning at 6:00 am (ugh) Brandon had an endoscopy to check for any possible cancer in the stomach.  Unfortunately, they were unable to find the liver during the fibro-scan except for 1 time (they need 10).  I am not expecting any results from the fibro scan.  For the endoscopy, Brandon had one polyp removed during the endoscopy with several biopsies just to check the area for any cancer.  It is anticipated that the biopsies will not show any cancer, but these biopsies were a check just in case.  I think we all agree that from the blood tests the liver is functioning.  If that is the case, I think we will just monitor the liver and if anything changes do more tests.  It is not the definitive answer I wanted, but with this issue I am going to have to trust the doctors and let it go.  We will see if there is any recommended follow-up.  

The question I keep getting asked is why is there possible liver damage.  Cirrhosis is normally seen within people who drink heavily.  After looking up all of Brandon's medicine, it appears it can be the seizure medications, including epidiolex (CBD oil).  So hoping this is a nothing issue because I don't think we can choose between having a bad liver or having bad seizures.  Not great choices.  Sitting on this one for now. 

I know I normally don't write about me, but my health has been part of the roller-coaster at the same time.  My knee had been deteriorating for a while.  Tony tells me it has easily been over a year or more.  But it finally got so bad that I really couldn't drive.  I need to drive for work.  I made an appointment with an orthopedic physician after I found out from my primary care doctor that I had a torn meniscus. After meeting with the doctor there were some other small things that needed repair as well.  We decided to go forward with surgery.  The surgery was successful, and I am now doing physical therapy to help with the healing process.  The main thing now is being able to walk up the stairs to help Brandon.  I can do that now, but it is still a slow process.  

I was also due for my yearly exam with my ob/gyn.  I hadn't been during COVID.  Unfortunately, my pap was abnormal.  In December I had to go back and have two biopsies in the cervix and uterus.  A little scary as the pap results were unusual.  The good news.  The two biopsies were normal.  They will monitor with another pap next year.  But all good news.  

I have no idea how I have managed to work and deal with both of our health issues in the last 6 months.  But I am glad to say we are done.  Hopefully Brandon will be happy after Christmas and to start our fab 2022.  The goal is to go to Liverpool and London in 2022.  We are both ready for a celebration trip passing year 3 cancer free.  

Merry Christmas and Happy Holidays to you all.  I know I am thankful to have Brandon hanging with me over the holidays.  We are planning a few nights watching Christmas movies.  We are both looking forward to a "fab 2022".  And remember - all you need is love.  

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

The Amazing Eyes - A Brandon Update

I realized I haven't updated the blog since our presumed COVID diagnosis in June 2020.  After 40 days with a fever, Brandon one day stopped running fever and was acting like Brandon.  I still give him immune boosting drugs, daily breathing exercises, nebulizers twice a day to clear his lungs.  This week we went back for a cat scan to see if Brandon's lungs had cleared from having ground glass nodules during COVID. We are closer to clearing the infection from the lungs but there is still some remaining nodules.  I also began feeling better after about 6 weeks, but on week 5 felt like I was drowning in my lungs.  I went back to the doctor, had an x-rays and he said there was fluid on my lungs.  I would like to say today I am 100%, but on occasion I find that panicked feeling from my lungs when I am exercising or doing something strenuous outside and I am also having some remaining gasto issues.  Both Brandon and I are vaccinated and are loving a little more freedom. Please get vaccinated.  You really don't want this illness. I dont think anyone really understands the long term effects even if you are lucky enough to not be in the hospital.   

Today is not about COVID.  Today is about the eyes.  I am blogging today about the eyes in hopes we may help someone else who is struggling tying to find a diagnosis, more information or treatment for things that don't look right with your child's eyes.  I cant say we have all the answers in this blog, but I can say we certainly have seen many professionals who have given their opinion over 27 years.  With the eyes we are still learning.  

Where to start.  When Brandon was in grade school, the school kept telling me they saw something going on with Brandon's eyes.  Up to this point Brandon had strabismus in both eyes but we had surgery to correct early on.  His eyes looked fine to me and Brandon's acuity was pretty good, so it was hard to understand that he had a vision problem.  I agreed that he seemed to be vey careful when walking which seemed like a depth perception issue.  But he also had low muscle tone in his truck that could contribute to this.  I took Brandon to an ophthalmologist as recommended by the school.  The ophthalmologist said he didn't see anything wrong with Brandon's eyes.  We were referred to San Antonio to a neuro-ophthalmologist that did a complete exam on Brandon and again said he did not see any issues with Brandon's eyes.  But the school and other therapists did see issues with his eyes and over the years pushed me to go to other specialists.  So I did.  I took him to a low vision specialist who also said she did not see too many issues with the eyes but he did appear to have a lower vision blind spot and issues with peripheral vision.  We ended up in Houston at the University of Houston School of Optometry.  They also did several vision tests of Brandon and did see some issues with his eyes.  They found Brandon had a blind spot when looking down, appeared to have some peripheral vision issues and was red/green color blind.  We could work with this.  

However the pressure continued.  Finally another mom suggested I have a functional vision exam from the Texas School for the Blind.  I was lucky to be able to find an expert from the school who I hired to do an assessment.  She came to the house and started with a series of tests.  One of the tests was for Brandon to find objects she had left out on the kitchen counter.  It quickly was very clear that Brandon could not see a complex visual field.  A simple test for Brandon to complete was putting objects on the kitchen counter and asking him to find one very obvious on the counter mixed in with other objects.  There were about 20 objects sitting on the counter and this one very obvious object.  Brandon was really excited to try as it was a game.  But he never found the object.  You and I would have been able to pull this object within a second.  He could not find this object after looking for 5 min.  So she took 1/2 of the 20 objects away leaving 10 objects on the counter.  She asked Brandon to find the obvious object again.  This time he looked and looked and by the 5 minute mark he found the object but with great effort.  Then she just put the 1 object on the counter and asked him to find it and after about 15 seconds he found it.  It started to really bring home some of the issues I had seen with him but wasn't sure why.  When Brandon was young every trip to Houston to see physicians I would take Brandon to the Zoo close by.  I always thought it would be fun for him to see the animals.  But each time he would look at the sky or the wrong direction.  I would turn his head to the animals and say there is a bear or the bird or whatever the animal was.  He still didn't seem to find it.  Frustrating for both of us.  After this test I realized he couldn't see the animals because the visual field was too complex.  I took him each year to see the fireworks and again we both would get frustrated because he would look the wrong way when I would say do you see the fireworks.

From this test Brandon was diagnosed with cortical visual impairment.  Cortical Visual Impairment  Even though Brandon was diagnosed with Cortical Visual Impairment he does not meet the definition of blind in the State of Texas due to his acuity.  He started receiving vision services in school and used a walking stick which he hated.  We worked with him to not step in front of a car at the grocery store which sometimes worked and sometimes not.  We asked him to use the walking stick in the environment especially when there were steps involved.  I took Brandon to more doctors to confirm his actual visual issues.  One ophthalmologist said they saw some atrophy in one of his eyes.  Brandon still has good acuity, could read liner notes on CDs and read some information in books.  

Some of you may know that in 2018 Brandon and I took a trip to Branson Mo.  He was very excited to go see a ton of shows.  Brandon was tired because we left very early one morning and arrived mid morning to Branson.  We drove around picking up tickets then headed to a show.  Everyone was trying to give Brandon the best experience by letting him sit on the front row of these shows.  After the first show, Brandon was rubbing his eyes, closing his eye and was fairly agitated.  We went to check in the hotel and then head to the second show.  At the second show Brandon sat in the front row.  There was lots of activity, lots of lights facing our direction.  I noticed he had one eye covered up.  He was grumpy.  For those who know Brandon that is rare.  We got back to the hotel and rested, ate and went to the last show where they again put us in the front row.  He had a meltdown crying he wanted to go home.  We left after the show to go back to the hotel.  Brandon was miserable.  He was so miserable I called the airline for us to fly home early.  He managed to do a couple more shows the next day and we then we left Branson early the next morning.  Everyone in Branson was very nice about helping us.  After the trip, I realized we needed to check out the eyes more.  I took Brandon to the low vision doctor, a retinal doctor, an ophthalmologist, and then finally to a neuro-ophthalmologist in Houston.  All said that they did not see anything wrong with the eyes.  We went to his neurologist who said it was possible it was ocular migraines and gave us a low dose seizure medicine that helps treat migraines.  The neurologist said if there was not improvement we could stop the drug.  That was right before COVID.  I started Brandon on the medicine but things didn't improve.  

When using his communication device he also seemed to act like he is seeing the device for the first time often hunting for the right words or letters.  Communication was slow.  Not because Brandon was thinking slow, but because his eyes made it even harder to find the right words. It appeared that Brandon would get exhausted from trying to use his eyes for vision and communication.   Brandon's current communication software is no longer supported and will be phased out.  We had to choose another device or another software for Brandon to use.  We had a great idea that Brandon may be faster on the communication device if he were able to use his eye gaze.  The device arrived for Brandon to try the eye gaze.  We were all excited.  To use the device your eye gaze is tracked to your individual pattern for selecting a button on the device.  Everyone's gaze is slightly different.  We tested Brandon's eyes.  The gaze was all over the place.  He was having a hard time using the device to make it work.  After really trying to finalize his gaze we figured out that Brandon's right eye is all over the place in regards to his gaze.  So we turned off the right eye.  We also found out that even with the left eye Brandon does not appear to be able to track the bottom row and also was pretty slow at finding the correct button. The representative from the device company and Brandon's speech therapist (Lesli Bassford) suggested Brandon get an assessment from the Optometry Center for Vision  Therapy.  We had the assessment.  The Center diagnosed Brandon with a list of 10 major issues, mainly related to how the brain talks to the eyes.  Brandon still has the blank spot (restricted vision) looking down and some on the sides, a slight case of myopia and a astigmatism.  He also has selective vision (when his brain tells one eye to only take in vision), and most importantly Brandon has constant alternating exotropia which means the eyes are constantly moving alternating. Exotropia: Symptoms, Management, and More (healthline.com).   There is much more on how the eyes track and gaze but it is pretty technical.  

I began doing more research on treatment for persons with neurological conditions and with visual impairments.  Brandon went back in to see his low vision doctor here in Austin.  We decided to start with prism glasses and see if they helps initially.  We may have to do a combination of prism glasses, perhaps some therapy, although the verdict is varied on possible success, and surgery.  Brandon is fairly happy wearing the glasses and I have noticed the eye closing is better.  But also recognize this may be a long road of trying different treatments to help his eyes.  It is amazing that Brandon functions as well as he does with so much going on visually.  AND he never complains about it.  

I really felt awful after we received the results for Brandon.  All the years he has figured out a way to make his eyes work for him the best he can.  I also am really upset that kids and adults like Brandon are going undiagnosed because we haven't had the right tools or providers with the expertise to help diagnose.  If you read the article I linked to above apparently there is still more to learn on how the brain and the eyes interact, so I am sure there is more to come.  Brandon still has cortical visual impairment with visual issues in complex visual fields but it is really even more complex than this. It is never an easy answer with Brandon.  We will continue to get all the information we can to decide what Brandon is willing to do to help himself.  I asked Brandon if he is aware of his vision issues.  He said yes.  I asked if he thought they were as bad as the report.  He said he didn't think so.  This new information is just more information to gather as we continue to try help Brandon see as best he can see so we can sit in that front row of a fabulous show and he can enjoy it.