things i'm thankful for:

Clozabam:
When I think about the fact that before moving to Phoenix, before the VNS chip, before the brain surgery, before Clozabam, Damonito was having hundreds of seizures each day.

Happy Thanksgiving to everyone. Damonito was having a bad day yesterday but that means he was having a few drop seizures every hour which doesn't seem so bad. There is a lot of excitement that surrounds the holiday so it's not surprising that he'd have more seizures. Despite the seizures he had a great day. He enjoyed some of the traditional thanksgiving feast... turkey... and of course, the traditional thanksgiving banana.
Damonito and I were playing in the living room. We were playing, "I'm gonna GET YOU!" Like any toddler, he loves it and laughs so hard that he can barely make it to the safety of the sofa before I "get him." Last year a bad seizure day would have meant that he was down for the count, in bed, not even able to come out of his room. So it was great to have a bad seizure day that would have been a good seizure day a year ago. Thanks, Ovation Pharmaceuticals for making Clozabam available in North America... Canada... you've made the life of one little boy better.

superman!

Halloween is my favorite holiday. Dressing up and going trick or treating is such a blast. I have a long standing tradition of going trick or treating first with my kids, then with my friend, Deb, and her girls, when Joe was born he joined us and then Damonito (I suppose when Harmonie has her baby we'll have to figure something out for trick or treat!).

Sometimes the excitement and the lights are just too much for Damonito but not this year. He was dressed as superman and we wheeled him around the neighborhood. He seemed to be having a few drop seizures but he was in good spirits (he! he!) all night. I dressed as a witch and I guess my hat was pretty intriguing.




Damonito is my little superman. My superhero. He makes me humble everyday.

everything is relative...

Damonito is doing well right now, this despite the fact that he had a grand mal seizure this morning. He's a growing boy and because of that adjustments in his medication have to be made regularly.

He's going to school right now. Kindergarten. 5 days per week for a couple of hours a day. He loves it. He's doing so well talking and signing. I say that because of where he is coming from. Everything is relative. He is saying "so silly" so clearly it just makes you smile. He is also signing "more" so plainly. It's so encouraging.

His seizures are doing so well that he's able to play outside. He loves the sand.

Brother, where art thou?

Over the weekend, I took Joe to the newly opened Mesquite Grove Aquatic Center (this place was incredible). We had been there for awhile and were waiting for our turn in the whirlpool when I noticed a woman in the pool who was carrying a young man who most likely had cerebral palsy. The woman was bouncing up and down in the water and it was apparent that the young man was having a load of fun. He was laughing, it made me smile. I saw that Joe was very interested in the young man and he watched him intently while we waited. Joe wasn't alarmed he was just watching him have fun.
Later in the day, I took Joe out for lunch and we sat eating our sandwiches discussing the water park. Joe looked at me and said, "Sometimes I wish my brother didn't have seizures." Me, too. We decided that it would be fun to take Damonito to the pool.

It's always a humbling experience when I see someone who has more problems than Damonito. It could be worse. It could always be worse. But at least he got to go to the pool. Damonito couldn't handle it because he'd have far too many seizures. Everything about it would a problem.

smiles and kisses all around

Damonito is back to school and enjoying life. He lost a tooth and another one is loose. It's great when something like that happens when it's supposed to. Sometimes when you go to give him a kiss he gives you his forehead or when he's really not in the mood he gives you his fist to kiss. It always makes me smile when he grabs my neck and plants a kiss on my lips.

i should know by now...

No matter how good Damonito is doing there is always this underlying knowledge that he is not doing well. He has good days and bad days. Some good days are really good but the bad days are awful.
Damonito spiked a fever that hung on because of some underlying infection. Grand mal. Grand mal. He landed in the hospital. Every single day is a struggle. No one ever gets a break. You can never let your guard down. You have to constantly be on the look out. Constantly thinking.You have to know what is going to happen before it happens. You have to breathe through your eyelids. You have to be so familiar with everything that when a hair is out of place you see it immediately. It's not something you can ever turn off. It's your life.

first day of kindergarten

Today was Damonito's first day of kinder-
garten! He goes to public school, they have a wonderful class for him with 6 other students. He gets to hang out with other kids his age and his level. Last year he was by far the most challenged kid in the class but not this year. It's so exciting that he gets to do something normal.

He's doing very well right now. Damonito, Joe and I hung out yesterday and really had a blast. I had Damonito dancing on the bed (I held on to his pants with his belt loops - yes! he had pants on! - and was moving his hips back and forth - he was cracking up). And dancing. It was just a normal day. It's so great to see him doing well. He even lost one of his bottom teeth. A normal thing that happens when you are in kindergarten. It fell out all on its own. Just like it was supposed to.