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.

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.

Happy Birthday! Damonito!

Damonito turned 5 today. He was having a bad seizure day so we all piled into his bedroom and into his bed to watch him open presents. He was a little put off by the stuffed scorpion that i bought for him. mostly because it's stuffed. he likes to build things and he likes to line things up. so the bag of foam blocks were a huge hit.

it's all about balance

Any thing extreme can cause seizures. For instance, bright colors sometimes cause seizures. Bright light. It's hard to take him to stores and restaurants because he gets over stimulated which causes seizures. Illness makes him much more susceptible, a high fever can cause seizures. When he's sick then his body can't absorb his seizure medication the way he normally would leaving him at greater risk. And excitement. Over activity. Too much for too long. And under activity, not enough to keep his mind and body going. What kind of day is it going to be? Right now, the color blue does it for him. We have to take care not to buy him clothes and toys that are blue. Like the sort of Thomas the Tank Engine blue. He loves to play. If he's having a bad seizure week, it's a tough call saying he can't play.

Nothing is easy

I've mentioned this before but it is always the case that one problem gets solved but another is often created. So the battle is always trying to figure out what you can live with and what you can't. But I have to say that the words "impacted" and "bowels" in a sentence are never good and as it happened managed to land Damonito in the hospital last week. He's ok and home now. Drawing and writing and playing with my lense cap.

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.

One of my favorite photos...

Losing control

Damonito's seizures have been gradually getting worse again. His grand mals had been completely under control but he's been having them weekly. It's all part of the disease. After a new treatment, it just becomes less effective.
Somehow, through it all, he keeps a smile on his face.