By
Terri King
Sorry, it’s been a few days since I have written anything but I have been busy. Dylan made it through his first week of school. I think he likes it just fine. It’s hard getting him back on the new schedule, but he will adjust to it soon. I just want to tell Sherri thank you for the awesome shirt you got Dylan while on vacation. I think the new schedule is what’s affecting the change in Dylan’s seizures.
Dylan is 12. He was born with a rare chromosome disorder that has left him moderately intellectually challenged. He also has some cerebral palsy and intractable epilepsy. We have tried so many types of medication and he has even been implanted with a VNS Vagus Nerve Stimulator, which should control his seizures, however, he still has sometimes 6 to 7 seizures on a daily basis. At one time he had between 15 and 30 on a daily basis, but with the combination of medicine, and the VNS, most days he has about 6. The medicine that he is on has very bad side effects and we are hoping to get legislation passed in Maryland to legalize, medical marijuana, and the CBD Oil, that is known as Charlotte’s Web. As his parents we watch our little Superman struggle with these debilitating seizures and we often fear for his life, because of them. Witnessing him seizing is a daily nightmare that no parent should have to see, and no child should have to experience. This drug that is produced from the marijuana plant has been working miracles for others with seizures as well as other disorders. This drug could in fact save our son, and also give him a greater quality of life.
However, this drug is not available in the state of Maryland and the only way that we could hope to acquire it is through illegal measures, or moving to a state where it is legal. It is already legal in 15 other states, but moving is really not a feasible option for our family
CBD oil has been effective in reducing the number of seizures children endure, and because it is a non-psychoactive compound, it doesn’t produce the “high” feeling commonly associated with pot. There is no good reason why this potentially life-saving treatment is being withheld from children like my son.
Please join me in asking the state of Maryland and Governor Larry Hogan to legalize CBD oil for medical use so that thousands of children across Maryland have a chance at a better life.
By
Terri King
Dylan has been in school for two days now and seems happier since he has got back in the routine of things.I guess I was right about him missing school. He seems to be worn out when he gets home from school because he lays on the couch watching TV till dinner is done.Dylan has had two great days of school so far and that makes me happy. He is still having seizures they seem to happen not long after he is given his medicine.
By
Terri King
Dylan is still having seizures I don’t think any medicine is going work for him. I wish they would hurry up and get the laws passed to legalize the charlottes web here in Maryland. I have a feeling that is the only thing that would work for him. The VNS only helps with the nighttime seizures.Today we get to meet Dylan’s new teacher. I’ve heard good things about her. he will start school tomorrow. I’m glad we get to meet her before he starts. I’m sure he will learn to like her, but he will miss Mrs, Sherri and Mrs, Brook.
I went to the FYE store in Arundel Mills mall in Hanover Maryland, store #01856 on August 4th 2015 and bought a Superman shirt for my son, the stupid cashier Shawna proceeded to sell me the Backstage pass deal. Which I really didn’t want, but she said that it was a free trial, so I reluctantly agreed to get it, but then she proceeded to tell me as a gift to me that I would be receiving three magazines of my choice to check out for three months. After she rung me up I immediately looked at my receipt and noticed that the magazines were not free, but an automatic enrollment for a year after the initial three month trial. I immediately made her cancel the transaction so that my credit card wouldn’t be charged. She supposedly did that and I left. After I got home, I felt like I had been duped into joining this BackStage pass garbage that she convinced me to try for free, so I called them up and immediately cancelled that too. I thought I had everything straightened out, but when I returned home today which is August 21, I received a People magazine in my mailbox. I called down to the store and complained to her where she told me to call the subscription service to cancel it myself. I told her, I shouldn’t have had to do that since she cancelled it for me and gave me a receipt showing that. I called the subscription company and had them cancel it, because I explained to them what happened and told them if they charge my credit card, then I would take them to court. They took care of it right away, at least I am hoping, but that is where it stands now. I got the corporate phone number and called them but, of course nobody was there to take my call, so I left a message and complained about the store and their sneaky practices! I will never shop there ever again, and I will make sure I tell others not to shop there.
By
Terri King
Dylan has been difficult the past few days he won’t keep his hands out of his diaper.I believe he is bored and misses the structure of school. I told him today I can’t wait till school starts, but I’m not sure how happy he will be because he is getting a new teacher this year. I have heard good things about her so will see. It has been almost a week since the surgery and he is still having a few seizures.
By
Terri King
Dylan got his first bath since the surgery, I bet he is feeling better now. He is doing great about keeping his hands off the incision. He is still having a few seizures here and there. School starts next week, I think Dylan is ready to go back because he gets bored staying home. I think he likes the structure of school.Dylan has been making a lot of news noises I’m not sure if it from the VNS or not. He has been laying on the floor playing with his toys and one of his favorite balls.
By
Terri King
Dylan had surgery today to change the battery in his VNS.Dylan’s surgery went well today.He was only in surgery about an hour. They let one parent walk back with them and wait till they are out and then you get to give him a kiss on the cheek.We are home already and he is resting now. Dylan was up half the night I guess he thought it was party time.The doctor informed us that the battery was no good, so it’s a good thing that we had it changed. He said it was already on and working. I’m so glad we don’t have to wait for the neurologist to turn it back on. Now hopefully he won’t have as many seizures.
By
Terri King
Dylan’s surgery has been moved to tomorrow at 12. I hope it stays that way because, I’m going to cancel it all together it already messed our plans up for our day at Assateague Island tomorrow. He has been rare form today. He backed his chair into my leg and now I have a little red mark on it and it’s a little swelled up.We took him with us today to get my daughter registered for college.Let me tell you it was the most hectic day ever. We had to leave the building several times because, he thought it was okay to be loud as he wanted to be. He also thought it was cute to make fart sounds on his arm, and tried to destroy a fake plant they had in the waiting area. Yesterday Dylan had a seizure were he fell face first he and got a small cut on his chin thank God it didn’t need stitches.
By
Terri King
Dylan’s surgery appointment was canceled and rescheduled for next Thursday at 8:45. He had a doctors appointment yesterday the said Dylan has an ear infection and upper respiratory infection as well. Dylan was in a good mood yesterday while we were at the store he was grabbing for everything in grasp. He is still having more seizures than he should be having. He is napping right now because he got up too early. He is in a good mood today and that makes me happy.
thetruesuperman 