intense concentration...

Damonito loves to stack things. he can get some towers going sometimes. and he's very patient about finding the exact spot to stack the next block so it doesn't knock everything down. he sizes it up. before he completely lets go. he's very proud of himself when he's successful.

What's Mine is Yours....

Generally, it's very difficult to get Damonito to keep his clothes on. You have to watch him because he almost instantly takes them off. Last Sunday, I was hanging out playing with Damonito and it was a little warm. I had a sweatshirt on so I took it off (I had 2 shirts on) and Damonito was very intrigued with my shirt. He tried very hard to put it on and with my help he pulled it over his head and shoved his arms into the sleeves. He wore my shirt for a couple of hours and then took it off because (I think) he was getting hot. But it was only off for a short time before he was putting it back on.

perceptions are everything...

I have this tendency, when things aren't going my way or when something particularly sad happens, to make a B-line to spend some quality time with Damonito. He humbles me. And nothing matters as much as he does. Not a bad day at work. Not a relationship fallen apart. Not the price of gas. Not global warming. My full focus is on him.
And he is incredibly happy.
He has no idea what's in store for him. He doesn't know what it means that he'll never really know the beauty of the sunset, that he'll never ride a bike. He'll never understand words on a page. He'll never go off to college. He'll never walk down the aisle and say "I do." But he's incredibly happy. So when I'm about to throw myself a pity party, I go hang out with Damonito and he brings me back to reality. He loves me and he's always happy to see me. And if he wants me to be a chair for him, I'll be a chair.
At this very moment, he's happy. His life is grand. I live with so much more than he could ever dream. So I need to appreciate everything I have today because I have no idea what's in store either.









photo by Joe

bed head

Damonito will be 5 this summer. He's tall for a 5 year old. His bed had been an issue for sometime. He needs a crib. He can't sleep in a regular bed because we can't have him getting up in the middle of the night walking around. He needs constant supervision. He could really hurt himself. However, cribs are for babies.

Damonito's mom worked hard to get him a new bed and was successful this winter. He now has an adult size crib. Isn't it beautiful? Basically it's a hospital bed with a crib around it. There are 2 panels in front that drop, but it has windows so he can see out. It does all the things a hospital bed does. Goes up and down. You can bring his head up too. We are so pleased to have it.

Sunday as he was waking up from his nap I walked into his room and was kneeling next to his bed and he pressed his face to the window to give me a kiss. I think he really likes his bed.

six of one, half dozen of the other

The trouble with epilepsy medication is often it solves one problem but makes something else worse. With the new medication, Damonito's drop seizures are nearly under control but at the cost of more grand mal seizures. In reality, even though recovery from a grand mal takes time, they do less damage than the drop seizures. However, the grand mals are scary because he stops breathing. Damonito is one of those rare cases so things like light and colors can cause drop seizures. Certain color are worse than others... bright blues and reds together are a guaranteed seizure. Sometimes things that didn't cause a seizure one day will cause a seizure the next.

prognosis

According to emedtv.com: the prognosis for individuals with Lennox-Gastaut syndrome varies. There is no cure for the disorder. Complete recovery, including freedom from seizures and normal development, is very unusual for people with Lennox-Gastaut syndrome.

remember to breathe...

SUDEP is sudden unexplained or unexpected death in an epilepsy patient. It's when a person with epilepsy dies unexpectedly, without apparent cause. I know this now because Damonito was found blue in his bed one Sunday morning. Luckily, while the ambulance was on its way his mom was able to help him breathe. I'm really not sure how everyone is coping but they are.