We're Getting There

I got to spend some time with Damonito on Friday. It was a good day. He was the best I've seen him since his surgery. Definitely more like himself. He still has some obstacles to overcome but it's hard not to be excited when he's in a good mood.

We watched The Adventures of Elmo in Grouchland. I've seen it dozens of times but Damonito loves Elmo so we watched it again. We've been bringing out his birthday toys a little at a time and he was proud to spin wheels and open doors all on his own. Clapping every time he finished. He even used his left hand to hold his strawberry milk (it's actually a nutritional supplement).

Nicole brought him a cup of water that he drank with a straw. I had never seen him drink water before, he'd always gotten it through his G-tube but Nicole said he'd been checked out to actually drink water so last week he got to have some. Damonito is 12 years old and never drank water. Nicole said he really likes it.

Stalled CBD trials

This fall, Damonito was to be part of a medical trial to determine the effects of CBD (or Cannabidiol, a compound found in marijuana) on epilepsy. CBD doesn't get you high, it's not that part of the plant. With all the dispensaries around the county experimenting with CBD oil and hospitals in other states doing trials, there is reason to believe it helps with seizures. It's been well documented.

 The trial Damonito was to be part of has been stalled while our Arizona Congress figures out if CBD should be changed from a Schedule 1 to a Schedule 2 drug. A Schedule 1 drug is considered to have no medical value. Dispensaries around the country produce CBD oil but the thing about having the pharmaceutical companies involved is that you know what you are getting. You know that the pill you take today is exactly the same as the pill you take tomorrow, as the pill you took a year ago. Damonito needs that assurance. We simply can't leave things to chance.

Damonito currently takes 7 anti-seizure medications. He has a VNS chip (kind of a pacemaker for the brain), he has had a full corpus callosomotomy and he still has seizures everyday. CBD could help him. There is hope. Write your Arizona Congressperson and ask that they work to change CBD from a Schedule 1 drug to a Schedule 2 drug so research on the potential medical benefits can be ascertained. It could make a difference in this young man's life.

The Family Visits

Over the weekend Damonito's Aunt Harmonie and family came to visit. It's great to see his face light up with recognition. It's something we're hopeful about but not sure how much he has retained. He seems to remember more than we anticipated.

Damonito had a birthday but postponing the party until he was feeling better seemed like the best option for him right now. He's still weak and struggling from the surgery plus he's still having seizures. Not as bad as before but seizures. Right now anything can be a trigger.

The Sykes brought some presents in plain brown paper wrapping. Counting games, he loves counting. He absolutely remembered to tear open the paper to reveal his gift. He even knew he needed help to get it started.  

And then there were the thank you kisses.

A good time was had by all.

Never Become Hopeless

There was an article in the July 2015 issue of Wired Magazine about a boy with epilepsy. Sam has a different type of epilepsy than Damonito but there are some similarities between them. Sam's epilepsy benefited from cannabis and if all goes well, Damonito will be part of a study involving cannabis in the fall. The thing about the article that really resonated with me was the very last paragraph.

His dad, Fred Vogelstein writer of the article, wrote that years ago an epileptologist had made a point of saying that, as hard as you might find it sometimes, the one thing you should never do is become hopeless about the situation.


Sometimes I wonder how long he can go on this way but it's just my own preconceived idea because I know the possibilities. Damonito keeps pressing on because he doesn't know any different. There are good days and not so good days but each day has to be accepted for what it is. Most importantly, never give up. There is always hope.

Happy Birthday, Damonito!

Happy Birthday, Sweet Pea. You are the light of our lives.

Smiles all around

Yesterday was a good day. It was a good day in a string of just ok days but when a little progress is made it's hard to be unhappy. Damonito is still having seizures but not with the intensity as before the surgery. That said, yesterday was a good day.

Yesterday was a day of lots of love. Hugs and kisses for everyone. He's such a sweet boy. We played tickle, hearing him laugh is music to my ears. There is no better sound.

Kids with severe epilepsy often have behavioral problems, not this kid. He's about as sweet as they come.

Number 8

Damonito is fascinated with numbers. 8 is his favorite, 2 is a close second. Damonito has really never been able to talk. He has a voice and about 5 words, eight and two are among them. And silly. He says, "silly, silly, silly." I dropped by to hang out for a bit yesterday and he gave me a big hug and a smile. When he hugged me he patted my back and said, "awww."

It's hard to know what has been affected by the surgery. He's not saying numbers, although he likes to look at them and points. I would say his personality hasn't really been affected, he loves to give hugs and kisses, always has. He moves very slowly and deliberately. He's shakey and weak, and tires quickly. But I do see progress.