Movies!!!!

We took Dylan to Superman versus Batman on his birthday and I do believe he enjoyed himself. I can’t believe he was that quiet through the whole movie. His favorite parts of the movie were the fight scenes and the car chases.That’s a  boy for you.  So he had a wonderful birthday. Then we took him to his favorite place to eat which of course is the Outback. He loves the bread and the blooming onion. He was really lively when got there he ending up knocking over Dacota’s glass of water and spilling it all over him. So Dacota was mad the rest of dinner. Dylan couldn’t help it he was excited I guess.I’m posting  a couple new pictures taken at school. I love seeing him smile.

 

Daily News!!!!

Dylan has been doing pretty good. His ear infection never healed from the last time. So my husband took him to Patient First this weekend and he still has an ear infection and now he is on antibiotics. We knew it wasn’t healed because he wasn’t acting his normal self. If he is sick or anything else is  wrong him his seizures will increase. I gave him a haircut this weekend  he looks so handsome.

 

A special gift for Dylan

One of my old friends from my neighborhood started sharing Dylan’s story with her thirteen years old son Nathan. Nathan was touched so much by Dylan and his story that he wrote him a letter and made him a Superman Design. He prays for Dylan on a daily basis, along with his parents. I just wanted to share this with everyone. Nathan thank you for thinking of Dylan and your beautiful gift. Thank you for all your prayers and good thoughts for Dylan. Thank you LouAnn Smith for your incredible love! May Almighty God bless you and your family tenfold! I Love you my friend

The Real Superman Part XXII

By Jeff King

The Real Superman Part XXII

I know that I haven’t written in forever. I have been extremely busy and there has been a lot going on. Let’s jump right in. The last post I wrote about was trying to get our County Executive Steven Schuh to get on board allowing medical Marijuana to be made available to patients in the county. He and the county council just zoned their way around it though. They’re idiots in my honest opinion. Anyway here is what has been going on with Little Superman. In previous blogs, I mentioned a good friend, Chris Hartsell who I met through a friend of one of my older son’s. This gentleman wanted to help us obtain some medical cannabis to try out on Dylan. On Thanksgiving Mr. Hartsell arrived at my home with a tub of butter, which he made using cannabis and coconut oil. I gave Dylan his first dose later that night and for the first time in what seemed forever, Dylan didn’t have a seizure for 24 hours. Afterwards, though he did have a very bad tonic -clonic seizure which really did him in. We decided to increase the dosage and the frequency of the medication and after tweaking it we came up with a dosage that has definitely decreased the frequency of the seizures, but also the length of the seizures. He has also gone several days without any seizures as well. They haven’t subsided altogether, but, we have noticed a drastic change in Dylan. Dylan has been a lot more vocal and animated since he has been taking the whole plant therapy. I am aware that this medicine does have some THC in it, but it also has high amounts of CBD and that’s what we’re going for. The THC is probably minimal; however, I do believe Dylan probably is getting a high off the medication, but, it can’t be any worse than the legal poison we have to have him ingest two times a day. He has been a whole lot happier and the teacher’s and TA’s at school said that he has been more focused and is making a lot of eye contact. They said he has been very vocal and much happier than he used to be, so to me, that’s a win, win. There seems to be a little side effects, though; some nights, Dylan will not sleep. He will stay up all night and then he will sleep the entire next day. Another side effect is he is hungrier, but I believe that’s to be expected.

Anyway, we took Dylan to see his new neurologist, Dr. Tanjala Gibson at Kennedy Krieger. He was very animated and even got up out of his chair. She was happy about how well he was doing and we did actually let her know that we wanted to try the CBD oil and when she was in agreement with Terri and me, we told her that the Dylan that she was seeing before her; didn’t look like the Dylan of two weeks ago. We already have him on CBD. We didn’t tell her that it was the full plant therapy, but we’re planning on telling her at his next appointment. He has been on this now for about a month, and we have noticed some real good changes. He is trying to talk again and if he does, it wouldn’t be nothing short than a miracle. Dr. Gibson did tell us that one of her colleague’s was doing a current study on cannabis and that it has been going on for over a year, and the results were actually positive. She said once the state gives the okay that she will get her license to dispense it to us for Dylan. We are really wondering what the actual Charlotte’s Web oil would do for Dylan. Hopefully, we will be able to find out soon.

As a parent who must sit by and helplessly watch their child suffer through these demonic seizures; to see your child’s personality being stolen away by these vampires, that drain him and leave him a shadow of his former self; there is nothing you wouldn’t do to try to cure your child, or help them in any way possible. I know that what we are doing is illegal, but I can attest first hand as to the great changes that we are witnessing on a daily basis as little by little Dylan is coming out of the darkness that once held him captive. Slowly but surely his personality is returning. Make no mistake, this hasn’t stopped the seizures completely, but it sure does offer us hope. It offers Dylan hope. Every day we get another little glimpse of our champion. The little boy that does battle with the one kryptonite that has time and again brought him down. He has never given up on the fight and neither will we. Until next time!

Daily News!!!!

By

Terri King

Hi, everybody, it has been a beautiful week here in Maryland 70’s all week. Dylan had a rough couple of days with seizures and shaking a lot, but now he seems to be back to himself. He was all smiles this morning I hope he has a wonderful day at school.

This is a video someone shared to me via facebook. I found it interesting. This the is the cannabis oil we are trying to get for my son. It worked miracles for the little girl in the video. I feel the same way about all the different drug combinations as she did. the petition is still gaining signatures we now have 83,846 supporters.

Daily News!!!!

By Terri King

Hello everyone, Sorry it has been awhile since I have written anything. Dylan has been back at school for three days now after being out sick for a week with an ear infection and sinus infection, he seems to be pretty good. I had his I.E.P meeting yesterday everything went well.He will be attending summer school again this year.His physical therapy increased too. His seizures were really bad Sunday night he had about ten seizures just while he was sleeping. The next morning he seemed fine. The petition is doing great 83,222 signatures now. There is a meeting about law 97-15 hopefully the law will be passed.

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https://www.change.org/p/don-t-stand-in-the-way-of-my-son-s-health

Daily News!!!

By

Terri King

Good afternoon everyone sorry it’s been a while since I have written anything. But I have been busy with my classes and taking care of my family. Dylan has been sick for a few days along with his older brother. They both went to the doctors today and both of them have ear infections and sinus infections. My poor little guy just wants to sleep when he is sick. You can always tell when he sick because the seizures increase.We are going to a rally tonight for MEDICAL CANNABIS AND HEARING IN ANNE ARUNDEL COUNTY. We now have 70,694 signatures on our petition to get the CBD oil legalized here in Maryland. If anybody would like to join us the address is 44 Calvert St, Annapolis, Maryland 2140

https://www.change.org/p/don-t-stand-in-the-way-of-my-son-s-health

https://www.gofundme.com/beast

The Real Superman Part XXI

Dylan RunningSnapchat-1746799917897567028The Real Superman Part XXBI

By Jeff King

It has been about a month since I last wrote on the blog. I have been busy working and also with college. I have also been looking into getting CBD oil legalized here in Maryland. One of my older son’s Nicholas most recently introduced me to a young man who is an advocate for NORML in Maryland. His name is Chris Hartsell and he has asked Terri and I to go down to Annapolis Maryland to sit in on a legislation session concerning the legalization of medical marijuana, but more importantly the CBD oil that we are so desperately trying to get for Dylan. I informed him that I would definitely be interested in this, and that I would like to bring Dylan as well and perhaps share our story with the Governor, and the legislative committee concerning this matter. We definitely have a story to tell and we want these lawmakers to hear it.

Although we are not currently member of NORML and after having hearing some of the chapters leaders testify on video in Annapolis, I actually see why many of them are not taken seriously; however, I intend to change that. If I am asked to testify, I believe I bring a personal and heart-felt story to the message of why this plant should be legalized, and made available to patients that are suffering from different ailments. As I have mentioned before, I do not use marijuana, nor do I even drink alcohol. I am not condemning anyone for what they may do though.

I have personally witnessed a few people who were dying of cancer, and even one person, who was very near to me die of AIDS. These people were in constant pain and I watched as these diseases ate away at their bodies and left them former shells of themselves. The friend who died of AIDS couldn’t eat, or do anything, because he was in such miserable pain. He began to smoke marijuana for the last six months of his life. Through this plant, he was able to get back some normalcy to his life. He could cope better with the pain, he also could eat, because it helped him with the nausea that he would get from his AIDS meds. Ultimately, he still died, but at least he lived his last days with some sort of peace.

I have researched many children and adults who have suffered from epilepsy and other ailments. The medicines that are prescribed to them is nothing more than legal poisons that have vicious and debilitating side effects. For example Dylan has to take two different medications to try to control his seizures, yet even these two medicines combined together working in concert with his VNS still doesn’t keep these vampires at bay. I call them vampires, because these seizures, and the medications used to combat them have robbed Dylan of his quality of life. The side effects for Keppra in children include sleepiness, accidental injury, hostility, nervousness, and weakness and even suicidal thoughts! Wow so my 12 year old son may or may not have thoughts of injuring, or killing himself? That is frightening! The side effects of Vimpat which by the way shouldn’t even be prescribed to any patient under 17 years of age, but because Dylan has intractable epilepsy, where no medication seems to work, he was prescribed this medication. The side effects include dizziness, spinning sensation, drowsiness, blurred/double vision, nausea, vomiting, tiredness, loss of balance or coordination, difficulty walking, shakiness (tremor), headache, or memory problems.  I must say, he has lost a lot of his cognitive abilities, and there are days that he cannot walk at all. We witness the tremors, so this is a great medication for people! Now I get to CBD oil, AKA, Charlotte’s Web. I have researched hundreds of cases of children and adults who suffered from uncontrollable seizures, such as Dylan has. This oil has worked miracles in all the cases I have read about. I have talked to some of the parents via email and most of them said, that they’re not even sure that their child would be alive today if it wasn’t for this oil. “CBD oil or Realm Oil) for intractable seizures in children with Dravet Syndrome. These children can suffer 40 or more seizures per day; the seizures are often prolonged in length. The oil is made a from a special strain of marijuana called “Charlotte’s Web” that has extremely low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana that leads to the “high”. However, the strain has elevated levels of cannabidiol, or CBD, a non-psychoactive component that has been shown to have a number of therapeutic benefits, including those that limit seizure activity. The oil is taken in an oral liquid form, not smoked like traditional marijuana. News media has showcased several families from states that do not allow the CBD oil. These families have moved to Colorado from their home states to access the oil legally for their children who suffer from the debilitating seizures”. (http://www.drugs.com/illicit/cannabis.html). I find it hard to believe that the Governor of Maryland, who by the way I voted for, who also has cancer hasn’t considered introducing this bill into legislation. Just today, I was sent an email from my friend Chris Hartsell informing me that the Anne Arundel County Executive that I also voted for has said that he would be against any legalization of medical marijuana, or any of it derivative’s. This fool doesn’t even realize how this could help Dylan and children like him. Hell this could help thousands of ill children as well as adults. These politicians would rather get behind big pharmacy and liquor than consider really helping their contingents that he promised to help for their vote. His banner reads, “People Before Politics” What a crock of BS. Steve! I say put your money where your mouth is and do the right thing for the people of the community. By being against this you are aligning yourself with the corporate clowns, who want to continue to push their poison on the people regardless of the harm that it is doing.

Before Dylan began to take this medication, he could run and play, he could talk and sing. He was a lively and charming little boy. Now he doesn’t talk. He hardly walks. His singing is replaced by unintelligible babble. We watched as our little boy slowly and quietly faded away, and was slowly replaced by a shadow of his former self! I ask you this, “What father among you, if his son asks for a fish, will give him a serpent instead?” Matthew 7:10.  My son can no longer ask me for a drink, or tell me he is hungry! The poison that he has had to ingest for the past 5 years has seen to that.

What parent would do whatever it takes to give their child a better quality of life? I know that me personally, I would tread through the flames of hell itself, if I thought I could find a cure for Dylan. There would be no mountain too high, nor a sea, or dessert to wide to cross. There’s nothing that I wouldn’t do for Dylan. This is just too important.

I am asking my friends, family, and acquaintances to please, please write, share and tell others about this important issue! I implore you! Thank you!

If you are in Maryland and can write the Governor on Dylan’s behalf, Terri and I would sure appreciate it. His email is http://governor.maryland.gov/mail/default.asp

If you’re a resident of Anne Arundel county, I am asking you to send Steve Schuh an email on Dylan’s behalf that email is Steven Schuh at exscu00@aacounty.org . We appreciate it.

These pics are before the Seizures and after the seizures

Daily News!!!

By

Terri King

Dylan has been enjoying his three-day weekend. We had a visitor this weekend, our granddaughter stayed with us again. Dylan and Kendyll seem to be getting along with each other better. Everybody is sleeping right now so I thought I would write a little bit about how my little superman has been. This weekend was fun Kendyll and Dylan are partners in crime they both got caught ripping papers in the dining room. She is too funny she likes to say I pooped all the time she will even sing it, some of the time she actually did poop. But enough about her let’s get back to Dylan and how he has been. He is still having seizures it is never ending with these damn things. It seems like nothing is ever going to work for him. I hope when they get this law passed for the CDB oil that it will help him and get him back some kind of normalcy.

https://www.change.org/p/lawrence-hogan-maryland-state-house-legalizing-cbd-oil-in-maryland

Daily News!!

By

Terri King

Dylan has been in a wonderful mood the past few days. I love it when he has days like that.Those are the days that make me happy as well. His older brother has been really helpful with getting him ready for school on the mornings he doesn’t go to school.I think his seizures are slowing down since the weather is changing again, but he is still having a few. We have started a petition to Governer Hogan to legalize the CDB oil for the treatment of epilepsy and any other illness that it might help here in Maryland.

https://www.change.org/p/lawrence-hogan-maryland-state-house-legalizing-cbd-oil-in-maryland

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