HH Update: Tres Johnson Turns 12!
Last February, The Higher Content honored Brandy & Tres Johnson. Tres suffers from a rare congenital disorder called Diprosopus, which causes all or parts of the face are duplicated. With no known cure and a short life expectancy, Tres has defied the odds, shocked plenty of doctors and made it to his 12th birthday with the amazing care of his mother, Brandy, his father, Josh, and brothers Trent and Nico.
Brandy has taken the time to update us about Tres' health and progress shortly after he celebrated his 12th birthday. Get an in depth insight about the last year for Tres and his family.
Four seasons, 12 months, 52 weeks, 365 days and approximately 130 thousand seizures less, you could say this has been a good year. We started Tres on Hemp Ease, a high cannabidiol “CBD” hemp oil, last March. The first day, he had around 65 seizures, then fewer than 40 per day after a few days, and holding over a year with approximate 90% seizure reduction thanks to the cannabis treatment. I started noticing improved cognitive abilities and awareness as he was no longer in a brain fog from constant over medication. His bodily systems became more regulated and eased into a better all-around physical state of health, as he was under weight and had very poor circulation amongst other things going wrong internally. I noticed that Tres has went up two clothing sizes since adding the oil to his regimen and three sizes since taking him off of all of his pharmaceuticals. That is amazing for someone who literally did not grow for years!
Thanks to very generous donations, we've raised over $6,000 for relocation to Colorado and had a very unfortunate turn of events. We used every cent and more to get relocated, only to be left stranded more than a thousand miles away from home with literally not even $200 dollars to your name, a disabled child, disabled father and one very confused, yet very well behaved dog. Some of you came to our rescue and thanks to Tony GreenHand and Courtney/SheSmokesJoints, we had enough money to stay in hotel and get back home. They auctioned off an Amazing Spiderman Joint (I am sure you have seen floating around the internet these days). They seriously saved the day! Before Tres broke his leg, we went and met Miley and Taylor (@TwaxFiend) in Denver at the 710 Private Art Collective. Some of the best conversations are with some of the best people. They were both so welcoming and made us feel like family.
Once arriving at the apartment and realizing that storms were coming in, Tres stared to go into his usual round of convulsive seizures. He had two hard days of this with the passing storms and lunar phases that were in that week. Our first and only visitors while at the apartment besides the dominoes delivery person was Christina. She had brought a box of goodies for us. Thank God she did! It included some sweets and dry flower, even some goodies for me - one of the sweetest gestures. I did not know it then, but he was about to break his leg.
The next day, we headed out to get some paperwork done and file for his insurance. My father, Tres and I were in my dad's truck when he had such a convulsive set of seizures that he broke his left femur upon hitting the back of the front seat. The pressure and force behind his seizures fractured the distal end of his femur and there were also signs of a distal end fracture of the tibia. Thanks to the awesome care package that Christina given us the day before, Tres was relieved with cannabis tea, and I am sure that helped with the pain as well, especially on the ride home.
We were on the interstate and went straight to Maggie’s Farm, which was the closest dispensary to us. They got me right in and their staff also helped keep an eye on dad and Tres while I was getting him a sucker. After all of this time, spending over five thousand dollars to relocate and then to be able to go to a store and find relief in a $5 sucker - yeah I think that just about sums it up. We did not know until we got home his femur was broken. Although he didn’t move much, he also did not seem to be in pain or have any redness or swelling until the very long trip home. I knew to be easy with Tres because with all hard seizures they take time to recuperate from and sometimes can harm him more internally than you know as in this case. We were so glad and thankful to get to the hotel and be able to wheel Tres directly from the truck to the room, a warm bed and a place to stay.
I finally got to meet Dani when she came out to the hotel with Tres' meds and one amazingly aromatic bath bomb. We sat and chatted as dad was laying down with Tres in the room. She helped calm me down just being there at that moment as I was frantically trying to get the money refunded to us ASAP so that we would not have to go back home so soon after exerting all of that money energy and time. Unfortunately, we could not get the money back for a while and we had to come home. We had enough to get a U-Haul and Josh (my husband) sent money for gas and all of that, so that we were not stranded. We were home within 2 weeks of our departure.
Withered and broken, I was down to 88 pounds when we arrived back to our home state of Missouri. My dad was just under 115 pounds and Tres had a broken femur. The trip to Colorado almost killed us - and I would do it all again tomorrow if I could. Cannabis helps, after nothing else did or ever had cannabis DOES. We have been in a circus of ups and downs leaving us in cast after cast thanks to over medications and some very brittle bones. Since Tres' bones are in this condition, he has broken his femur twice on his left side and once on his right side. When we got home and noticed his leg, I took him to the doctor that Monday - he was still not in pain but I had seen the X-Ray. I wanted to scream and crawl out of my skin it upset me so badly after all that had happened and all I had done to ensure his safety, he broke his leg and even worse, his femur. AND I had no idea when at that time!
When we got to the St. Louis Children’s emergency room by ambulance from Southeast at Dexter, they had us in a regular room and we waited and waited; for hours we waited. We arrived just after 1:30 pm and had been in a room until around 5 or 6 when they proceeded to give Tres Morphine. Yes, Morphine. His heart rate was down, he was vocal because he hadn’t eaten at all and had an IV in. Tres was mad, not in pain and it was apparent they were not going to do anything when the nurse had told us at 9 pm they were waiting for us to get a room.
By the next day, we were all exhausted. I was so upset and we were on our way home with a casted, unset bone. They did not reset the bone nor try to reposition it in any way because he did not walk or talk. By the time we had gotten to a Memphis Orthopedic for a second opinion two weeks later, the bone had stared to recalcify.
Since then, we have had two more breaks and they all came from very convulsive seizures. Tres seizures are still under 40 a day and I have only had to rescue breath for him 4 times since April 2015. This is a huge thing; I was resuscitating Tres that much per week before cannabis oil. When we were able to add a small dose of THC to his treatment regimen while in Colorado, I noticed his cluster seizures completely diminish until late October. Since then, they flare up with the lunar phases as they used to but hey, 40 is so much better than 400 a day!
Tres has started to take notice of several things that never interested him before, such as small simple puzzles and his cognitive ability is improving as well as his physical health. The bone issue is one that will take a lot of time but CBD and cannabis is also good for stimulating bone and cellular growth. Hopefully, that will help with this process as well.
The overwhelming support means so much to us all and is so greatly appreciated. I know you may have seen some of the hurtful things others may post about Tres and I want you all to know that things like that just happen sometimes. People do not always mean things so hurtful or do not always understand how they may come across on screen and may also need understanding. I have several people who I am now friends with whom I met when confronted with their hurtful comments. So please, stand up for others and especially anyone you see who is being mistreated. I think in many cases we just need to spread love and education without judgment - although that is easier said than done.
Tres has hard days, but every day is a good day. With every breath we are blessed and I cannot begin to express how much this experience has changed our lives and my point of view forever. Never let anything discourage you from doing what you know in your heart to be right, and fighting for those you love.
Tres was not expected to survive the first night and is now 12 years old. Tres was also told there was nothing to help control his over 300-400+ seizures a day; cannabis has. There are so many things I am grateful for; being apart from my other boys was by far the worst part of having my family ripped apart by the very thing that could help save their brother, all because of legislation. When you go to vote, remember us and all those who have died in search of better treatment options. We are so blessed even in our stress that I know what a miracle I have in all I have been given.
This has been one very eventful year to say the least. Thank you for tagging along for the ride of our life.