Here's the Doodle in full action mode.
He's very fast. All I can think is DANGER! DANGER! DANGER! Keeping up with him is almost impossible and with the 30+ seizures a day I don't have one nerve to spare. I'm on high red alert all day long. But when he's playing and NOT having a seizure, he's having so much fun. At least with him not being so mobile and sitting in bed or in high chair most of the day, we can work on things like drinking out of a cup and him brushing his own teeth.
I called Home Depot and they sent some moron out here to measure because we have so much tile and I need to have it carpeted for when the Doodle has a seizure. I don't know what else to do. I can't keep him locked in my room all day long or upstairs (the only places we really have carpet). So I carefully and painstakingly explain our seizure situation with them on the phone and they send out this guy who was clueless and did not want to measure. He kept trying to leave and have them send someone else out. He told me I was going to have to rip out the tile, ok, not my first choice, I thought they could carpet over the tile but whatever. I need to do this. Because he thought the tile looked nice, I shouldn't do it. So I re-explain what is going on here and tell him why we are doing this. That yes, this is quite a bummer and not anywhere near ideal but we have to do something. He told me I should throw down some rubber mats or glue some carpet squares down. So I told him NO, here's where you need to measure, this is where I want the carpet. Again, he argued with me. Not thinking it was a good idea because it might not "look" that good. Meanwhile the Doodle had a head-drop seizure right in front of him, fell down and hurt himself, and was now crying the hysterical, inconsolable cry.
I said, "See, this is why I need carpet! I don't care what the &%#@ it looks like...Just shut up and MEASURE FOR THE CARPET!"
Then, he had the audacity to tell me, "No, he just tripped".
I almost lost it. I already have a short fuse with people. I had to go to my happy place and count to FIVE. I usually try to count to TEN but with this guy, I could only make it to FIVE. It might appear to someone who has never seen a head drop seizure that it was a trip and fall but this was not and now I had to try and explain to this guy what really happened. Short of my kicking his ASS and calling Home Depot and complaining, he finally shut up and measured. Normally, I'd go to the YELP.COM website and bitch about it there, now I have this terrific forum for complaining.
On another note, Jimmy is reading a book called, "Let's Talk About Disobeying". We make him read for at least 20 minutes a night and I get to chose the material. I'm not sure if it's the braces or what but he has become quite a mouthy little 9 year old lately. Maybe it's the hot weather but he thinks he's all that and a bag of chips. I'm fine with giving him time outs, canceling play dates and taking T.V. and his video games away. We have a few fun little trips planned this summer but we are "staycationing" and staying home most of the summer. With our work schedules and the Doodle's health issues, it's not even a possibility to take a family vacation right now.
Jim has been working out at the coast and says it's hard for him to pass all of these motor homes and campers, these light-hearted people with normal lives going camping with the family and doing the things we used to be able to do. It's a real reality check when you have a child with special needs and figure out that being carefree is a memory. We're going to Disneyland later this year and depending on how the Doodle is doing and if we can control the seizures will determine whether we bring him or not. It's a hard decision because I have to worry also about Jimmy and his childhood. I want him to have drama and chaos free memories and know that he is also very important to us. I have a lot of guilt that he is getting short changed here since all of the focus is on Dom.