Astounding….

Last night I posted really late (I only have time to write after I get Ryne to bed) that today was Epilepsy Awareness Day. I asked for you guys to wear purple and share pictures of yourselves and to help spread awareness about epilepsy. I expected a couple of shares (from the grandparents) and a few likes. What I got instead was an entire community of people coming together to support my son and leaving me speechless at how much you care. I don’t have the words either written or spoken to express the gratitude we have for your outpouring of support.

My co-workers surprised me by wearing purple today. I told a couple of people about today, and it spread from there. Close to 20 of my co-workers dressed in Purple and then mugged for the camera showing their support #forRyno. Several people picked up on the avatar I created for Ryne in support for epilepsy and changed it to their own avatar on Facebook. Basically, people who didn’t have to, spent time out of their day to support my son and a cause that is so very important to us. And for that, we are grateful, and astounded.

It’s Purple Day

March 26th is Epilepsy Awareness Day. On this day, people around the world wear purple in support of epilepsy awareness and in support of loved ones with epilepsy. If you can, I’d love for you to wear purple and send me a picture of yourself wearing purple in support of Ryne. I would like to write a follow up post to show how much support we are getting and this is a good way to get a visual representation of just how awesome all of you guys are. Since we are trying to raise awareness, I thought I would post some epilepsy facts here that you may not have known. Please leave a comment and post a picture of yourself in Purple to Facebook and Tag me or Jamie (or both of us). So, without further ado, here are those facts:

1. Nearly 50 million people worldwide have epilepsy.
2. It is estimated that nearly 1 in 100 people have epilepsy.
3. It’s physically impossible to swallow your tongue during a seizure.
4. Anyone can develop epilepsy.Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.
5. Epilepsy cannot be cured; it is a chronic condition. It can usually be controlled however. At least 1 million people in the U.S. have uncontrolled epilepsy (one of those being Ryne).
6. You CAN die from epilepsy. Sudden Unexpected Death is Epilepsy (SUDEP) kills 1 in every 1000 people with epilepsy every year, but the root cause of SUDEP remains unknown.
7. Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer’s, and traumatic brain injury (as is the case with Ryne).

Famous or Historical figures with epilepsy:

1. Hugo Weaving (Agent Smith in the Matrix Trilogy or Elrond in the Lord of the Rings franchise)
2. Rick Harrison (Owner of World Famous Gold & Silver Pawn Shop and star of History’s Pawn Stars)
3. Neil Young (Musician whom Lynyrd Skynyrd feels should remember a “Southern Man don’t need him around, anyhow”)
4. Danny Glover (Actor)
5. Julius Ceasar
6. Charles Dickens
7. Alexander the Great
8. Bud Abbott (half of comedy duo Abbott and Costello)
9. Theodore Roosevelt
10. Lil’ Wayne (Rapper and Producer)
11. Jerry Kill (Head Coach of the Minnesota Golden Gophers football team.

There are a lot more, but the most important person I have found that has epilepsy is my son. He’s a star to me, and we are continuing to work to get him to Colorado to try to control his seizures with Medical Cannabis. Please continue to pray for us and to share awareness!

What if you can’t Buy Local?

As we prepare for the move to Colorado for Ryne, I have to say that I am in awe of the support and kindness shown to us by our friends and family and their friends and families. I received so many texts, Facebook messages, and people coming up to me in person yesterday when the Alabama senate voted in favor of Carly’s Law. Most of them wanted me to know so that we could stay here, well, move back to Alabama, and treat Ryne’s seizures closer to family. This has actually been a popular sentiment when we discuss moving. People will ask us, “oh, but did you hear they’re going to get that in (insert state here)?” I am grateful for that response because it means that the person asking the question likes us and would like to keep us near to them (and we would love to stay). There are a lot of hurdles with the neighboring states’ proposed laws and I wanted to explain some of those to help paint a picture of why our move is necessary and critical. I’m going to lay out the proposed laws state-by-state below.

Alabama: “Carly’s Law” was passed by the state senate on March 11,2014 by a unanimous vote. The bill does not legalize medical cannabis. What it does, though, is give a justifiable defense to parents if they are charged with drug possession for having CBD Oil. The Bill was amended before it was passed in the senate to include a partnership with the University of Alabama at Birmingham to study treatment and to be the sole provider of CBD oil in the state “to individuals diagnosed with severe epilepsy and neurological disorders that lead to serious and life-threatening seizures.”

This is a great first step as it does open the door for future strides in providing help for those who need it. There are problems with it, as well. First, it troubles me as to how the state will define “individuals diagnosed with severe epilepsy and neurological disorders that lead to serious and life-threatening seizures.” Is there a chance that some children with seizures will be deemed not severe enough cases to get treatment? Also, this is a study that serves at the pleasure of the government. What happens if they decide that the study has run its course and they don’t see any reason to continue it. With only one entity in the entire state providing the treatment, it’s quit possible that demand will exceed supply even with those whose seizures are deemed severe enough for treatment. With Cannabis being a Schedule 1 controlled substance, it’s a federal crime to transport across state lines, so there is no way to get more than what they are able to grow. Once we start Ryne on this course of treatment, we need to be able to continue with no disruptions. The law still faces debate in the Alabama House of Representatives before it can become law. It’s a fantastic first step, but it’s not what we need right now.

Florida: HB 843 is very similar to Alabama’s law in that it gives a legal defense if charges are filed for possession, though research is allowed at several state state universities. Again, these are state funded studies. There is always the chance that the state could pull the funding, again stranding patients without treatment.

Georgia: HB 885 is similar to Alabama’s and Florida’s law as it was recently amended to allow the justifiable defense for possession. The bill actually is more restrictive on who is eligible to receive treatment through the Universities and research facilities as this bill is viewed more as a move to put infrastructure into place in the event that Federal restrictions are eased on medical cannabis. This Bill is still in committee in the state Senate.

Kentucky: The “Cannabis Compassion Act” has passed the state Senate, and it is believed it will pass the House as well. This Bill would create legalization for families participating in FDA-approved clinical trials through state research facilities. I have already laid out my worries with government funded trials. And the scope of the availability to those who need the drug is severely limited with this Bill. It does not go nearly far enough, in my opinion.

Mississippi: “Harper Grace’s Law” is intended to legalize low THC, high CBD oil for epilepsy treatment. It makes no allowance for the growing the plants or dispensaries for the oil. To me, this is akin to legalizing ownership of Unicorns. You can have one, but where are you going to get it from?

Tennessee: The “Koozer-Kuhn Medical Cannabis Act” is by far the most comprehensive proposed legislation in the southeast. The Act would create the Tennessee Safe Access program that would legalize medical cannabis for a strict set of diagnoses. It would set up state infrastructure to grow the cannabis as well as have dispensaries where patients can obtain it. We would LOVE to be able to stay here and be able to get Ryne the treatment that he needs. A planned vote on March 10th by the House Health Committee was rolled over a week to give Bill author Bernie Ellis a chance to write an amendment to allow all forms of Medical Cannabis except for smoke-able. There is still an uphill battle to be fought here as to date the Bill has zero Republican support. The Republicans control both the House and the Senate, so without their support, this bill will not be able to be passed.

We would love to stay close to home and be able to treat our child as we see fit, but other than the Tennessee Bill that seems unlikely to pass (though we are still praying and hoping!), none of these Bills create an environment that is conducive to his treatment. When we start, we need to be able to continue to treat. Researchers are also finding that levels of THC and CBD may need to be adjusted in order to treat seizures. There needs to be freedom to experiment in order to find the maximum effect for Ryne. Colorado already has infrastructure set up and is ready to go. I hope this answers some of the questions you may have about the proposed local laws. I apologize if some of my information is dated as the debate and language of these laws is changing daily.

It’s fantastic that there is now conversation and that states are opening doors for medical cannabis. Unfortunately, it’s just not moving fast enough for Ryne. We have to go. He needs this treatment as soon as possible, and once he starts, we need it to not stop.

Say Hello to my Little Friend

It has been pointed out to me that I have yet to let you guys see Ryne. Some of you haven’t seen him in quite a while, and some of you have never seen him. So, I took a little video before we went into Kroger this afternoon. Here are some things that you will learn in this video: Ryne likes blankets, like his Nana G. He was not in the mood to sing, he learned a new word today, and…. he needs a haircut. So, please enjoy!

)

Hope

This video may be difficult to watch, but it shows the hope that we have put into medical cannabis and why we are making the move to Colorado for Ryne. Please watch this video and share it if you can. There is ZERO reason for this to not be available to my child where he lives. The only way to change that is to combat the ignorance.

Side Effects

When we made the decision to give Ryne medical cannabis, it seemed surreal. I would have never guessed that my journey with my son would include not only an advocacy for medical cannabis, but wanting to give it to my four year old. Through this blog, I want to share a little bit about how we have reached the decision and to bring a little bit more awareness of where we’ve been and where we are going from here.

One thing that I wanted to share is what I believe is the villain in Ryne’s life. Epilepsy is not fun. It makes things difficult for Ryne as well as for Jamie and me. But Epilepsy is not the enemy to me. To me, the enemy is his seizure meds. The medicine that is supposed to help him is what is holding him back. We’ve seen it with our own eyes the difference it makes when he is nearly off his meds, and we would like to let that kid out to play, but obviously we can’t just let him have seizures unabated.

The seizure meds, like all medicine has side effects. The idea, one would presume with FDA-approved medicine is that the benefit of the medicine would far out-weigh any drawbacks that side-effects would present. In Ryne’s case, while we don’t know what his seizure level would be without meds, it certainly is not being controlled by them. Below are the LISTED possible side effects of the three seizure medicines he is on. Out to the side is noted how many of his meds this is a side effect for. Bold side effects are ones we have observed in him:

Drowsiness x3
Sedation x2
Accidental Injury
Hostility x2
Nervousness
Loss of strength (weakness)
Dizziness
Loss of Appetite
Double Vision
Slow thinking
Impairment of Motor Skills
Drooling
Constipation
Insomnia
Upper respiratory tract infection
Irritability
Problems with coordination
Depression x3
Suicidal Thoughts x3

The only side effects on this list that we have not observed in Ryne are the ones that we cannot link to his meds (upper respiratory) or ones that he lacks the ability to share with us if he’s experienced (double vision, depression, suicidal thoughts). If Ryne was completely seizure-free, I’m still not sure if the benefits would out-weigh the side-effects. But It’s certainly not worth it when his seizures are not fully controlled.

He constantly falls. He has fits of rage where he will suddenly hit, head-butt, scratch, bite, or kick me and Jamie (or whomever is with him at the time. He is very sedated and cannot fully communicate verbally. He will turn five in July, but currently only speaks at an 18 month old level. We cannot let him continue on this path.  We have to make a change for him.

This is why we are moving to Colorado. Maybe medical cannabis is not the answer, but it sure seems to be doing a lot of great things for other children. We have to at least try. Our pastor, Aarron Schwartz at Restoration Church once said that God, our Father, loves us just the way we are. But he also loves us too much to let us stay that way. We feel the same way about Ryne. We love him just the way he is, but we love him too much to let him stay that way.

Groundhog Day… from PBS Kids

Everyday we have a ritual. Jamie meets me at my work with Ryne. She goes on to work and I bring Ryne home. I cook Supper and get everything ready for him to eat and while I do that, he disappears into a land known as “Storybook Village.” This land is home to Pig, Red Riding Hood, Princess Pea, and Whyatt. When there’s a “Super Big Problem” to solve, they become the Super Readers: Alpha Pig, Wonder Red, Princess Presto, and the titular “SuperWhy!

The show is very educational and I enjoy how he loves it, but it’s not without its oddities. There’s a character who’s a pig that is friends with three human children. It’s not so weird for a cartoon, except that he’s aware that he’s a pig with human friends and that it somehow should be weird. There’s now a dog that can suddenly speak when he transforms into one of the Super Reader gang, but when he’s just “normal” he can only bark.

But, by far the weirdest moment in the show is in the episode, “The Ghost who was Afraid of Halloween.” In it there’s a ghost who is afraid of witches and goblins and jack-o-lanterns and makes them disappear so that he won’t be afraid. Through their various learning powers, the Super Readers help the ghost to see it is all make believe and that there’s nothing to be afraid of. At the end of the story, the ghost sneaks up on Alpha Pig (who is afraid of everything) and scares him with a hearty “Boo!” Then the ghost says, “It’s ok, I was only pretending!” This prompts them all to laugh and then music plays them out and they get to celebrate their victory in song. Of course, the point that was missed in the whole story is that while the witches and goblins were all regular people dressed up, and pretending, HE WAS AN ACTUAL GHOST! So, no ghost, you were not pretending. You are a disembodied soul and I am terrified of you.

Netflix has 80 episodes of the show and in the two months we’ve had Netflix, my conservative estimate is that all episodes have been watched at least seven times. If Ryne is not at school, he wants SuperWhy! to be on the television. He doesn’t care for any other program. No Movies capture his attention, he just wants to watch that one show. Every day. All day.

I actually don’t have much of a problem with it because we’ve been noticing that he’s learning and he’s even memorizing the episodes (of course if you live out the same day over and over again watching the episodes over and over again, you’re bound to latch on to things). He’ll say lines of the shows before the characters do, and he’ll sing the songs with the characters before they start playing. But it’s more evidence that there is a super-smart kid waiting to be released from the fog of pharmaceuticals. It’s one more reason in a long list of why we are making our big move.

It’s No Secret…

While it is not imminent, it is official. We are moving to Colorado. Jamie and I have prayed and researched and we firmly believe that our best chance for giving Ryne his best shot at the best life he could have is to give him medical cannabis. We have reached the point where we believe that modern pharmaceuticals have taken him as far as he can go. We have tried numerous combinations and levels of seizure meds. What we have as a result is a four year old that is usually high as a kite….and still has seizures.

A few weeks ago we upped his meds again as a result of increased seizure activity. Since then, Ryne is not steady on his feet. He falls frequently, as evidenced by the bruises up and down his arms and legs. His singing and talking have significantly decreased. The thing that has not decreased, of course, are the seizures. This was particularly evident this past Sunday night into Monday morning as between 2 and 9 AM, Ryne had 20 seizures. 20!

I can’t describe to you the helplessness you feel as your child has a firestorm touch off through their brain and all you can do is hold them and try to comfort them through it. We had to give him his emergency Diastat gel. If you’re not familiar with that medicine, you may know it under its former name, Valium. We’re tired of watching our sweet little boy disappear into a haze of pharmaceuticals only to not have the benefit of being seizure-free.

I remember early on in Ryne’s stroke recovery when we realized that epilepsy would probably be an ongoing part of his life, his neurologist told us that his first priority was to stop the seizures. If they couldn’t be stopped, the priority became to maximize his quality of life between the seizures. His quality of life between seizures is diminishing almost as fast as the actual time between the seizures. We want to change that, so we’re heading west.

We’re gonna need all the prayers and support we can get, so this is where you all come in. This is going to be a big undertaking for us.  As soon as I find a job, we’re on our way. Thankfully, we have some friends and family that live in Colorado, so we won’t be entirely on our own. It’s kind of funny, we actually didn’t have anyone in Nashville, which was only 2 and half hours from where we lived in Alabama. That changed fast, as we developed some of the greatest and truest friends through our jobs and our church family at Restoration Church. I hope through this new blog that we can take you all with us on this journey!

 

Why I Stopped Writing

For those of you who have known me for several years, you know that I used to write a blog called TheBrandNewDad. I would write about various things my cool kid, Ryne, was learning or doing and the adventures we had together. I would write out imaginary conversations we had and document milestones to mark the passage of time as my boy grew into a man.

May 16th, 2011 changed all of that, however. That was the day that Ryne had a stroke. Since that time, we have gone through many stages of recovery with him. He was left with physical and mental detriments. He has epilepsy. He’s been through physical therapy, occupational therapy, and speech therapy. He’s seen an abundance of “-ologists” and other “-ists.” Through it all, I’ve had to grieve the loss of a son I’ll never have. No matter how he progresses from here, the little boy that I thought I would have will never exist.

The most important thing to point out here is that I am not disappointed in the son that I do have. It’s a blessing that he is still here at all. I thank God everyday as I lay him down to sleep that I get to be his Dad. But the grieving and the struggle through recovery strained the joy that I had experienced prior to his stroke. It was that joy that drove me and inspired my writing and without that inspiration, the words escaped me.

I now feel that I am through grieving. My kid does some really cool stuff despite the obstacles he faces and I want to share how cool he is. We have some big stuff coming up and some important things we want to say, so I am going to do it here. I won’t promise there will be something every day, but it’s my goal that there will be.