I feel like this has been one selfish weekend for me...I was Doodle free for a few hours on Saturday while my mom and I went to some garage sales and bought more crap that will probably end up at my next garage sale. Then my mom watched the kids so that Jim and I could go out for a much needed date night--kid free. We tried a new Mexican restaurant and went to see the John Travolta/Denzel Washington movie, Pelham 123 (pretty action packed movie!). And, then we had 6 hours at the lake today with Jimmy. We had a nice mostly relaxing day in the boat, getting some sun, having a picnic and I got to read 95 pages of my new Tori Spelling book, Moomywood. A real page-turner.
And Jimmy had a ball in the water and Jim lets him drive the boat. He's growing so fast and he's such a good little knee-boarder. Once he got going, he didn't want to stop but it was getting late and we tend to miss and over-worry about the Doodle.
Not to be Debbie-Downer but I can't help thinking how cool it would be if we could bring the Doodle with us. It's really unrealistic to think it's possible for him to be cooped up in the boat all day in the heat. He wouldn't be able to run around the boat without wearing his helmet and then he'd be even hotter with the helmet on and remember what I said about heat contributing to more seizures...and then the last time we brought him he made the day so stressful, he didn't want to wear his life jacket...he cried and cried...we swore we weren't going to bring him again...for a while anyway. If we can get the seizures under control, I would be much more likely to try it.
It's hard for me because Jimmy was such an easy baby. Our lives did not change at all. If anything, having a baby gave us more to do. We would drive 3-4 hours to go camping and boating. He was so adaptable. We took long car trips to places like Yosemite and the Mendocino Coast. I would go dirt bike riding with them in the motor home on the weekends and Jimmy was just something else I would have to pack along; kind of like he was our little baby-accessory. We attended weddings and parties and took him to restaurants, movies, theme parks, street fairs, county fairs, the mall.
Taking the Doodle to Costco is a big outing and undertaking. Taking him to his Occupational Therapy and Physical Therapy appointments is a lot. He's not easy to take places because he is not like most 3 year olds. He has no independence. He can't even walk on his own. We've regressed to the point when he was about 11 months old. It makes me sad that our family doesn't do the things that we used to love to do together. Even though, he doesn't know any differently, I feel like the Doodle is missing out on life being a little epileptic prisoner in his own home; trapped mostly in my room.
On a lighter note. Grammy watched the Doodle today and we set up the baby pool under an awning on the grass for him to play in. She said he liked it, but mostly just wanted to climb in and out of it (OCD).
I'm counting down the minutes until our UCSF appointment on Tuesday. I am hopeful that once the nice Pediatric Neurologist sees this little ball of cuteness and energy he will take us under his wing and with his doctorly expert new technology at his fingertips be able to quiet the Doodle's electrical storm firing seizures in his brain all day and night, every day.
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