Dylan got a letter from Santa….
Everybody that knows Dylan knows how he likes to rip stuff up. There was not one rip in the paper. The other day he came walking in the living room with this paper and laid on the floor with it and kept hitting on it. So, I’m thinking that is his way of letting me know he wants to go to breakfast with Santa.
Finally heard news about his helmet. Over the past three weeks, I’ve been calling about his helmet and nobody has returned my call. So finally I call today about it and they tell me the lady is not in the office today how convenient. So I asked the lady on the phone how hard is for somebody to call me back. She has avoided me far too long now I have left five messages for her over the past three weeks. It’s funny how you mention supervisor and you get a call right saying they talked to the company today and they will be mailing it right to the house. I told the lady on the phone now that wasn’t so hard now was it, I also said thanks so much and have a great day.
This is the result after having a 30-second seizure . He thought he could get up right away and fell face first on the floor. He was fine a couple minutes later all smiles and ready for school. He is superman!!!!!
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
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!