So some of you I haven't talked to in ages so here's a quick (trying to be brief) catch up...so you have some context to help explain posts about seizures, broken legs, and medical marijuana that you may see on my page...wall...feed...thingamajig.
1. Kathy and I have a two and a half year old named Otis. He is awesome! He also has had seizures since he was 9 weeks old. He currently has hundreds a day. His will not outgrow these seizure, so we've got to do our best to stop them. Because of his seizure activity he is developmentally disabled and functions similar to a 6-7 month old. We've tried tons of different treatments (special diet, Vagus Nerve Stimulator, and 11 or 12 anti-epileptic drugs, supplements) and none have worked...in fact most have made things worse...which leads me to two.
2. The special diet that Otis has been on for the past two years, along with some of his meds, have made his bones weak. We knew this was a possibility, but this was not the worst possible adverse reaction that accompanied his treatments...so a little over a week ago, 4am, I was repositioning him after he finished a cluster of seizures...I didn't realize his leg was turned all funky under the blanket when I lifted his shoulders up to place a pillow under his head...I broke his femur. He is recovering as well as possible and we're looking forward to cutting him out of his spica cast 5 more weeks.
3. Our plan. We are weaning him off the diet. His remaining options for seizure control are 1. Brain surgery. Taking out or disconnecting half of his brain. For some kiddos this option works very well...but tests do not show a focal point in Otis' brain. His seizures are generalized. This surgery gives him a 50/50 chance of ANY seizure reduction...Our other option is to move to Colorado to try Medical Marijuana. Medical Marijuana is helping to control seizures in children with severe intractable epilepsy...in some cases it is even providing complete seizure freedom. It is really a simple choice to make. We are planning a move to CO.
4. What you can do? Have conversations about medical marijuana with people to help change the negative stigma. It is not a joke...it is saving lives right now and should be available to children and adults who, like Otis, are out of options...regardless of their zip code. Medical Marijuana needs to be legalized so that we can research it. We realize that there needs to be more research...but Otis does not have the time for that to happen. Each seizure he has damages him and is potentially fatal. If you've read this far, thank you. If you would, please talk to people about this...especially those who are opposed to the idea. Send them my way...I believe that hearing our story and the stories of medical marijuana saving lives will change hearts and minds. It is a matter of educating people. If they were in our shoes...they would do whatever they could for their children or grandchildren.
Please comment with any questions or contact me.
Here is a link to Otis' personal blog.
http://otisflynn.blogspot.com/
Here is a link to Otis' blog for legislators.
http://mmjheals.blogspot.com/
Thanks for reading! Love to ya!
Smile,
Ryan
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| Zonked on the ride home from the hospital last Tuesday |
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| Happy to be home (in Baldwin) |
1 comment:
God bless you.
I too live in Kansas. My son had a brain tumor, when it was removed it left him partly blind and paralyzed, his side that was effected shook constantly, he walked in a stagger, since he was a teen, he learned that just walking down the street caused police to harass him and ask him if he were on drugs or drunk.
He was given all kinds of legal drugs, he didn't like them because they really made him feel high, or knocked him out where he slept all the time, he could not focus on the medical drugs given, then he tried marijuana, and though it did make him "high" he said he could function, he did not feel his mid was sluggish, and even though he became a honor roll student and invited to Who's Who, he elected to get his GED, that he passed with flying colors.
When he was caught with residue marijuana, he was arrested, the police officer in the case said he wished he could afford to send my son some where that it was legal... so after his court case, and jail time, he moved to Colorado where he got his medical marijuana card, now that it is legal, he has no worries there, but it has ripped my family apart, I do not get to see my son often due to the fact he does not drive, and I cannot go often to Colorado.
Making marijuana legal in Kansas would be a dream, and I would be so happy if they would just let medical marijuana legal for all people that it would benefit.
Sweet Otis, know others are here for you.
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