a battery of surgeries

Damonito has had five major surgeries. His biggest surgery wasn't even the most distressing. Although his brain surgery was scary and huge he came through it like a trooper and recovered rapidly. It was his tonsils, outpatient for most people, that caused the greatest stress.

He had an anaphylactic reaction which caused seizures which caused unresponsiveness for several days while we had no idea whether he was going to pull out of it or not.


So when Nicole texted me on Wednesday to tell me that Damonito was having surgery on Friday to change his VNS battery that had gone dead, I was more than a little concerned.
I had a huge knot in my stomach when the intern said "this will be a walk in the park compared to his other surgeries." Yea. We'd heard that before.

The upshot is, the surgery went well. Damonito did great. He's home. He's happy. And he has a new battery for his VNS that is tiny compared to the last one he had.

tough tired

Nicole and I have been trying to work out my phone troubles for a couple of months. The "troubles" are that I can't receive photos from just anyone on my phone. Well, a more accurate statement would be that my phone service doesn't allow photos over a certain size. Nicole figured this out and my first test photo was a photo of Damonito sleeping, with the caption "tough day at school."
Later, I was talking to Damon and I asked him about Damonito's rough day. He seemed confused and was explaining that Damonito's school had brought in a truckload of snow for the kids and that he had played all day. I mentioned to Damon that Nicole had sent me this photo, Damonito was sleeping, with the caption, and I assumed he was sleeping because he'd had a "tough day" of seizures at school. Still confused, Damon asked Nicole while I was on the phone and it occurred to all of us at about the same time that what Nicole had meant was that Damonito had had a "tough day of play" at school and he had passed out from being tired when he got home.
A "tough day" had always meant a bad seizure day to me, so it was nice to have a "tough day" just mean a long, tiring day. Personally, I'm hoping for a lot more of tough/tired days.

Merry Christmas...

Damonito had a couple of grand mals and an ambulance ride on Christmas Eve. He's been having more grand mals but this time he was having trouble breathing. It's an instant ride in the ambulance.

His neurologist hasn't been sure why he's having more grand mals but it was determined that the battery is dead on his VNS. We were never sure that the VNS was doing anything anyway, but maybe it really was helping his grand mals. The only way to know for sure would be to replace the battery. Changing the battery would require surgery. All they would have to do would be to open up his shoulder, remove the old battery and replace it with a new battery. He would have to be under anesthesia which his doctor would never agree to. Not now.


He came home before Santa and his crew made his way to the house. Christmas morning was a joy. Damonito got lots of fun stuff.

some Christmas card photos....

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.