Today's seizure count: Zero. Nada. Zip. Thank goodness!
Connor woke up this morning and started cooing away in his sing-song private language for the first time in a long while. It was so lovely just to stand in the doorway of his room for a moment and listen to him chatter away happily to himself as he reached for the dust motes in the sunbeams slanting thick and golden across his bed. And when he turned his head and saw me, he laughed out loud and broke out in a smile so big it wiggled through his whole body. So I knew it was going to be a great day.
After school (where he apparently had a really great time) and quiet time we ventured out of the house for the first time in a week. He's been having so many seizures lately that he's been spending long periods of time in a sort of half-awake state, and hasn't really been up for more than sitting out on the deck and on the cooler afternoons a walk or two around the block, which he tolerated in a sort of limp, apathetic way. But he really seemed to be feeling good today, so I decided we could make a trip out to the grocery store and if that went well, go out to the farm to pick up our produce share.
Connor reacted like the grocery store was the most amazing thing he'd ever seen in his entire life. He waved carefully to every single person we passed, and when I showed him each thing I was putting in the basket he asked me what it was. He was obviously engaged and really enjoying himself, so I figured he would still be good for a while and took him to the farm too.
Connor loves the farm. He really enjoys watching me weigh all of the fruits and vegetables, and he giggles at my attempts to sign all of their names (ever tried to fingerspell "kohlrabi" or "radicchio" when you can't remember how to spell them?) Sometimes we find a chicken or two pecking around outside, which he also finds highly amusing. I can't say I blame him, there-- chickens are hilarious.
Today we didn't see any chickens, but we did get to go out and pick a pint of cherry tomatoes as one of our "extras" (our CSA usually has additional pick-your-own items you can add to your share, often herbs or greens) which meant that I took the wheelchair off-roading out into the rows. He bounced along the grass next to the sungold tomatoes, which produced a lot of giggles. The wall of green plants stretched up well past the top of his wheelchair as I picked, and when I brought the half-full pint down for him to see he reached out and delicately traced the top of one of the fat orange globes with the tip of a finger.
We went home after that and cooled off as he'd had enough time in the sun for the day, but it was just so great to have my cheery little guy back again!
~Jess
5 years ago
2 comments:
Jess,
Having worked with lots of kiddos with major seizure disorders, it sounds like you have a good situation with meds and lack of illness going on there with Connor, congratulations! It's always amazing to see the real child shine through, all of a sudden they learn so much more and they are just there so much more!
I am happy for you all!
Lisa
Halleluiah! (I'm not sure I spelled that right, and I'm certainly not going to try finger spelling it.) I've been waiting for that. Do you think it's the new med configuration? [Pardon me while I interrupt this comment to get up and do a Happy Dance.] What a wonderful day. I'm vigorously hoping you have many more like that.
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