Daily News!!!!

By

Terri King

Dylan has been doing wonderful. He has been very verbal for the past few weeks  and a lot more mobile as well. We took Dylan to get his haircut last week and he slept through the whole thing. I think it was the eatiest haircut he has ever had. He met his new neurologist yesterday and seems to approve of her. She seems to be open to new suggestions on how to treat his seizures. We also aprove of her too. We had really good talk on the CBD oil.

 

Daily News!!

By Terri King

Hello, everyone!! We had a wonderful Thanksgiving with family and friends. Dylan has been in a great mood the past few days. Dylan really enjoyed dinner. I have to say he enjoyed the mashed potatoes and gravy the most. He has been very vocal and animated the past few days. It sounds like he is saying bad words like b*tch. Our granddaughter has been staying with us for a couple days while her mom gives birth to her baby sister.She is beautiful her name is Everleigh 6lbs 9ozs. Dylan must be getting adjusted to her being here now because he isn’t just sleeping anymore.In fact the past few days he has been up till 3:00 and 4:00 in the morning.My house is a mess between the both of them.ofcourse he is still having seizures but not as many as he was having.

 

 

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Everleigh the new addition to the  family.
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Dylan staying up till 3:00 am

 

Daily News!!!!!

Sorry, it’s has been awhile since I written anything, but I have been busy finishing up my classes and spending time with my family. Dylan has been doing okay. He was sick for a few days with a head cold. They canceled his neurologists appointment on the November 17 and rescheduled it for December 8 and I am on the cancelation list as well. His seizures are still a big concern. The battery change in the VNS didn’t make a big difference in the duration time of the seizures. Dylan had a really bad seizure the other night because we gave him his medicine a little late. His eyes were fluttering and his whole body was so still and it seemed like it lasted forever. I really hate forgetting to give him his medicines. The petition is still gaining signatures we now have 84,180 signatures. We need this law passed so my son can start receiving the treatment I believe will stop his seizures. This is picture was taken after he had his bath.

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

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

Terr King

Hi everyone, Dylan has been in a wonderful mood here lately. I hope it continues for awhile. November is epilepsy awareness month and the color to wear is purple to show your support. The petition is still doing pretty good we now have 83,719 signatures and it continues to grow. Dylan has been making some new sounds.He likes to sleep when he doesn’t want to do something. His seizures have been about the same mostly at night or when he is sleeping. We didn’t go trick or treating we stayed home and watched movies and I bought a big bag of candy for Dylan and his brother and sister. Dylan doesn’t like candy that much. We didn’t have any trick or treaters come to the house.

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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 to everyone and I hope you are having a wonderful day.Dylan had a rough night.We didn’t get much sleep last night due to his multiple seizures during the night. But the good thing about it is he woke up in a great mood this morning. He was laying on the bed with a big smile on his face.I hope his day at school went well.It has been beautiful outside today for it being the first week of October. The petition is still gaining a lot of new signatures we now have 47,958. We are going to get this bill passed.

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https://www.change.org/p/don-t-stand-in-the-way-of-my-son-s-health?recruiter=77171022&utm_source=share_petition&utm_medium=copylink

Daily News!!

By

Terri King

My little superman is growing up so fast. I was looking at him the other day and, I noticed his first chin hair. On days Dylan doesn’t have school, he sleeps downstairs with my husband because he getting to heavy to carry upstairs.On those days he thinks it’s okay to get up at five in the morning, but if he sleeps upstairs he don’t want to get.He had two seizures while he was sleeping last night so maybe that’s why he didn’t want to get up. So I had to hurry up and get everything done this morning. Bath, dressed, breakfast and brush his teeth that’s the fun part he still fights me when I’m doing that. You would think I was torturing him. This is a picture of him waiting for the bus.

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https://www.gofundme.com/beast

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

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