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.

Beautiful

One of the first things people notice upon meeting Damonito is his incredibly long eyelashes. Everyone comments about them. He has these gorgeous deep blue eyes and these long lashes to go with them. He's quite handsome. I'm not just saying that because he's my grandson but because he is beautiful. Those eyelashes have something to do with it. For 11 years I have tried to capture the beauty of his long lashes. And I keep trying.

There's No Place Like Home

Damonito is home. A hospital bed was delivered along with some medical monitoring equipment and he is resting comfortably. He gets worn out pretty easily but it feels like we've turned some corners. It's good to have him home.

Giant Leap

I wear an epilepsy awareness wrist band with Damonito's name on it. We have this game where he takes it off my wrist and plays with it, tossing it around. I handed him my wrist band and he moved it from his left to his right hand. Sounds simple but for him, huge.

So huge, in fact, he was so proud, he gave me a little smile.

Teeny Tiny Baby Steps

We know this will be a long road to recovery. There will be physical therapy, occupational therapy and speech therapy. After a surgery such as his, sometimes it takes time for the right and the left to figure things out. We look for signs in everything.

Elmo is Damonito's trusty side-kick. Elmo found his way to his shoulder. Damonito is in there, he's slowly making his way to the surface.

He's in there...

 I'd like to say we were seeing progress every day but we really weren't. He wasn't having seizures, at least that we could see. There was that. He would open his eyes a little but he just stared into space. No eye contact.

Late afternoon on Friday, Nicole decided to climb in bed with him. Damonito opened his eyes slightly. We were talking to him trying to get some recognition from him when Damon said something from behind me and Damonito's eyes moved toward his dad's voice. When his dad leaned in for a kiss, Damonito slowly reached his arm up and rubbed his dad's head. This was a game they played daily, Damon would put his head down and Damonito would rub his hair. The tears were flowing, he's IN there. He is in there.