A Long Good Stretch

Damonito has gone since last fall without a trip to the ER. Some times I feel like it backfires when I post that things are going well because it seems to always take a turn. The fact is that he has so many hills and valleys that there are bound to be problems at any given moment.



He's doing ok. Still having too many grand mals. He had three in one day last week.

Recovery from the grand mals seem to be a little better. Faster. That makes everyone feel better. School has been great. He's learning more signs. He is still very tactile. He loves to touch and feel things.  He's always interested in my watch or my bracelet. He loves the lense cap to my camera.




We're hoping for another long stretch of good.

human beings are resilent

It was a good summmer which rolled into a good fall. In the never ending quest for the perfect medication to end all epilepsy medications for Damonito yet another drug was introduced. Sabril or vigabatrin was the latest attempt.
It lasted 4 days, sending Damonito into status and to the hospital where he spent a few days.


He's off Sabril, which wasn't such a sacrifice given the fact that the side effects included permanent visual impairment. Tunnel vision in 25% of adult users so severe that they had only 10% of their field of vision. It seems like the worst side effects of a drug always seem t effect Damonito in the worst way.

Before sending him into status it was causing him to have spasms or constant twitching. He had something that we can only describe as a panic attack. It's hard to know. Plus, Sabril causes liver damage and dental issues.

So it was back to Dilantin and he's feeling better. I didn't see a single seizure on Thanksgiving. It was a welcome change.
I haven't posted for awhile so I'm sharing some photos from the past couple of months.

He shoots! He scores!

A couple of weeks ago I got a real treat and I got to go to Damonito's school. He loves school. He has lots of kids with disabilities to play with and learn from. Nicole was with me and when we arrived, he was having P.E. A teacher came in and the kids got to play basketball. Damonito is pretty good at it. He has great motor skills. We could hear him "talking" and laughing, Damonito has only a few word vocabulary but it's such a joy to hear him speak. Nicole and I had to hide in the office and watch through the window because if he'd seen us, it would have ended there. It was great to see him having so much fun.



Damonito's cognitive skills are at about an 12-18 month level. This summer when I got to hang out with his 7 month old cousin, Calder, I could see some similar repetitive behaviors, they both are very tactile and like to rub and scratch things with their fingers. Damonito will probably never talk in sentences but it's wonderful to hear him learn a new word. I think he understands what we are saying to him, he totally gets it when you say "gimme five!"

He continues to have grand mal seizures each week which can keep him home from school. He's a happy boy with no fear and a ton of determination.

special, indeed

Damonito's brother, Joe, and I recently flew to Ohio for a big family gathering. My mom, Damonito's great grandmother, turned 80. Joe and I got to spend a lot of quality time with the family. We were sitting on the plane in Columbus, Ohio getting ready to return to Phoenix and Joe was talking about the trip. Joe is very intrigued by everyone's relationship to each other so we spent a lot of time discussing how he was related to everyone. We were talking about my sister, his aunt, and I was telling Joe that I had an amazing sister. She is the best sister in the whole wide world and I thought I was pretty lucky. Joe said that he had the best brother in the whole wide world. He said that Damonito was very special. "When you are born handicapped, you come out special."
He's right. Damonito is, indeed, a very special boy.

Happy Birthday dear Damonito...

July 27th was Damonito's 6th birthday. His brother, Joe, and I were in Ohio attending my mom's 80th birthday party. It would have been awesome if he could have gone to Ohio, too, but traveling is out of the question. So we had his party Saturday. He wasn't having the best day. He'd had a grand mal in the morning and was pretty dragged out in the afternoon. He seemed sleepy and sedate. Until we brought out the presents.

He loves when you light the candle and sing "Happy Birthday." As I've said before, he has autistic tendencies because of his epilepsy so opening presents and tearing paper is a lot of fun for him. And his new pop-up game is the perfect repetitive motion he seeks.

kids love water

Damonito loves the pool. This year he is tall enough to stand in the big pool with his head out of the water. He's getting so tall.











He loves the little pool, too, because he can reach the sand to play with it. Yep. It all ends up in the pool. Damonito picks up the sand and rubs it into his palms until it falls into the water then he picks up another handful and does the same thing. He does this over and over.






People with epilepsy are 5 times more likely to have mental health and behavioral problems. Damonito has "obsessive compulsive behavior" that is directly related to his epilepsy.

Children who experience generalized seizures are more prone to problems with inattention and hyperactivity. He's in his own world. Only occasionally catching your eye and smiling just to let you know he's having fun.

school's out for summer

I was hanging out with Damonito today. The school year is over and because of a technicality, he's ineligible for summer school. He has had a great year at school. He's saying and signing more words, he's much more attentive, and he's feeding himself. Which is a sight to behold.
One of the symptoms of Lennox-Gastaut is learning regression so an entire summer without going to school can't be a good thing. We will do absolutely everything we can to make sure he's working on all the things he's learned. We know it's not the same.

Damonito's been quite interested in my glasses. He's been gently taking them off me and putting them on himself. He'll sit there for awhile and look around, like they give him a different view. Then he carefully takes them off himself and puts them back on me. Upside down.

He's doing great feeding himself. His new thing is he tries to tickle you. Which is hilarious because he takes both hands and wiggles his fingers on your back or you leg, places that would never tickle. Of course, he cracks up and you can't help laughing hysterically because he's getting such a kick out of it.