Jumping the Gun

Home Depot came out and measured so that we can carpet the majority of our house since it is 90% tile now. The only rooms with carpet are our bedroom, upstairs and our living room which opens to the rest of the main house which is either carpet or hardwood. Most of the granny unit is also tile.

I'm in a conundrum because I am faced with wanting to keep the Doodle safe but if he ends up having to go into a wheel chair or walker then it will all have to be ripped out again and I just wasted $7000. I'm being told that they cannot carpet over our tile, so our tile will have to come out...But wheel chairs and walkers don't roll to well over carpet and pad...hmph. Needing to make a decision on this, I just asked Jimmy's Magic 8 Ball and here was my response, "Concentrate and ask again". I shook the little black ball vigorously and quickly asked again. Then it told me, "Outlook good". So what the hell is that supposed to mean? Outlook is good to get carpet? Or outlook is good for the Doodle, so do not bother getting the carpet?

The Doodle is so cute. He's sitting next to me right now up on the bed, clapping his hands when Dora and Boots clap. He tries ever so-slyly to reach over and bang his hands on the keyboard knowing he's not supposed to. I just told him NO and now he is rubbing my back.

The seizure activity has slowed down over the last few days. He had the big scary one on Saturday and hasn't had another one of those again. Maybe the Depakote with the Keppra is working. Finally. But I'm remaining calm, cool, collected and realistic to the best of my Type A ability. I can't stop thinking about what our Santa Rosa neurologist, DR. NO HOPE, told me, that once his body gets used to the medication and dosage, we will be back in full seizure swing.

I'm trying not to get too excited about this. I don't want the carpet ripped out from under me (punn actually intended).

What BBQ?

We tried to attend a family bbq last night, again with the high hopes.

The bbq was at a nice familiar park and what do kids love to do at the park? Right. Play and run around. Parks are not designed well for children with epilepsy. There is more cement than you would think at a park and so many sharp metal edges on the play structure, not to mention the height of the play structure. Even in the small kiddo play area the entire sand box was outlined with a large cement curb. I'd like to meet the Brain Surgeon who designed this play area. What moron puts a sand box next to a cement sidewalk? It's like a slip-n-slide, even I almost fell down. You cannot safely run around on cement with a thin layer of sand over the top of it.

Seizures are now in full control of our lives. I had to shadow the Doodle and hold onto the back of his shirt the entire time. I brought the stroller thinking he might sit in it and do a puzzle or eat giving me some time to visit with my family. No chance. It was HI and then a couple of hours later after the chasing ended, it was BYE. I was so frustrated I couldn't help but cry the whole way home.

He only had one seizure while we were there and I had a hold of him so he did not get hurt. I'm trying to think which seizures are worse since we've now experienced them all. We started with the severe grand mal seizures that lasted about 1 minute each of full body convulsing. These were less frequent and usually only happened first thing in the morning. After a grand mal, he would be exhausted and sleep. He would feel so crappy after one of these grand mals that he would want to sit and be held. By the time he felt better, it was a rare occurrence that one would happen right away again. He's had the staring seizures and I think unless he's driving a car, these are the easiest to handle. He doesn't fall down, he just stares. The little short spikey seizures are what are so very hard to control and deal with on a daily basis. We can't go anywhere, I can't put him down and he can't play. It's physically and emotionally draining and has become impossible to hold a child that does not want to be held during the waking hours of the day. The fatality rate of a person dying from having a seizure is rare, it is the result of the fall and/or the injury that can be devastating. I keep thinking about John Travolta's son, Jett, and how he died.

Basically, I need to find a padded room somewhere or an Iron Man protective suit for him to wear in order to feel safe putting him down. It's almost like The Boy in the Plastic Bubble but with large amounts of padding.

Things I Will Never Take For Granted Again

These seizures have changed the way I think about things. I can't believe in such a short period of time, just 5 months, how drastically our lives have changed because of them. It must be torture for a Toddler to not be able to get down and play and be so traumatized every time a seizure throws him to the ground, not knowing why. It must be brutal to have to wear that uncomfortable helmet all day long. I know how hot it must be and we haven't really had too many hot summer days yet. Did I mention, we have no air conditioning? The irony is, heat tends to bring on seizures...

As I sit here in bed with him tonight, I can't help but think of all of the things that have changed for him. I'm not feeling sorry for him or us, it's just heartbreaking that this is our new reality. These are some of the things the Doodle used to be able to do that he cannot do anymore. I will never take them for granted again if the seizures ever stop.

Running around the house independently like a big boy, exploring.
Jumping up and down on my lap, off my lap, on my lap, off my lap.
Climbing stairs.
Riding his bike.
Playing in the tub with toys.
Seeing his beautiful head of hair, now I barely recognize him without the helmet on.
Playing on a playground.
Playing basketball with his brother.
Attending a preschool.
Sitting at his little table and doing projects.
Greeting people at the front door.
Keeping himself busy for a few minutes so Mom can go potty.
Being able to sleep in his big boy bed.
Playing hide and go seek.
Chasing the ducks at the park.
Watching him go down the slide and giggle hysterically and climb back up the ladder to do it again.
Going for walks with him while he would push his favorite cart.

It's not to say he can't do any part of the above, just not on his own without a shadow hovering over him or two hands holding onto him tightly.

I'm in a real funk tonight after just giving the Doodle a bath, watching him have another seizure in the tub. The simplest thing like a bath has now turned into a big scary nightmare. I've got white knuckles on the tub and the hair on the back of my neck is standing up the whole time. The Doodle doesn't have a clue...he's splashing and having a blast with his soap paint and then boom! He goes down and not gently. He's always thrown down with such force and never puts his hands out to catch his fall. My blood pressure must be through the roof right now. I've never felt so helpless with such heartache and worry.

He's had more than 25 seizures today and he will probably have at least 5 more before the night is over. I cannot imagine the quality of his life, and ours, if these seizures continue at this rate. How can he function? How will he be able to live? His house is no longer a safe place for him. The only time he is safe is when he is in bed with someone or sitting on someone's lap.