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.