Saturday, September 22, 2007
1 of 2 field trips
Silly Lars slept through his entire school day Friday, basically. Leftover tiredness from all the seizures Thursday? Who knows. At least he got to go to Davis' Farmland in the afternoon. It was goat day @ Davis'- Changing Lars & sprinkled animal food around him so the baby goats came over to munch it up & in the process made Lars laugh hysterically walking across his belly to get at the food on the other side. Sleeping through school field trip reminds me of the amazing Three Little Pigs show Lars was in at the end of summer school (July 27). It was fantastic. We all went to see it. Yes, Lars slept through it (looking like the most adorable little piggy you've ever seen in your life), but the play for him wasn't about the performance, it was about every single time he & his friends & teachers got together and practiced, about doing something together with them, about knowing he had a part.I had been noticing him making a bbbbbbb sound by blowing air between his lips more than usual, and when I joined him he would giggle. And wouldn't you know it, that was the huff-&-puff-&-bbblllloooowwww-your-house-down sound. They had a fan that they wheeled around when it was time to blow, they all knocked on, or felt, the tactile doors that the staff had made, recorded sounds on step-by-steps- it was absolutely fantastic. Every student had a part that fit him/her just right. Lars was the little piggy who made his house out of brick, so I guess he could afford to nap, safe & snug inside.
Friday, September 21, 2007
Interictal
Lars seems to be his regular sweet angelic happy self this morning. Let's hope this interictal phase is longer than the last.
Thursday, September 20, 2007
clusters
Today Larsy had his second major seizure cluster in as many weeks, both at preschool. Last week was the first time he had to get diastat, which for Lars is prescribed for a seizure lasting longer than 3 minutes, or if he has 3 or more shorter seizures within a half-hour. Last week I left work and picked him up. This morning at school he had seven seizures, including four after the diastat, and Andey picked him up.
Last week his timing was excellent, as he was already scheduled to see his epileptologist the next morning, so we got a depakote (primary seizure med) level drawn. Doc decided to maintain depakote dose & watch him; today we decided to increase it from 9 capsules a day to 10 and see how he does with that.
Lars felt okay through the whole ordeal, and maintained his good spirits. He may have been buoyed, as I was, from the beautiful kayak ride he, Joa, Michelle & I took the night before--big beautiful lake, setting sun, peaceful & quiet. Lars just loves being in the boat. Oh, did I tell you? An anonymous friend (thank you eternally, anonymous) donated money for half a used kayak, and I sold my Martin acoustic-electric guitar & got the money for the other half & we now have a fabulous tandem kayak. Can scoot the seats back & forth in the boat & use it as a single, too. I'm so thrilled-- got totally hooked on kayaking this summer & this makes every body of water accessible. So exciting.
Last week his timing was excellent, as he was already scheduled to see his epileptologist the next morning, so we got a depakote (primary seizure med) level drawn. Doc decided to maintain depakote dose & watch him; today we decided to increase it from 9 capsules a day to 10 and see how he does with that.
Lars felt okay through the whole ordeal, and maintained his good spirits. He may have been buoyed, as I was, from the beautiful kayak ride he, Joa, Michelle & I took the night before--big beautiful lake, setting sun, peaceful & quiet. Lars just loves being in the boat. Oh, did I tell you? An anonymous friend (thank you eternally, anonymous) donated money for half a used kayak, and I sold my Martin acoustic-electric guitar & got the money for the other half & we now have a fabulous tandem kayak. Can scoot the seats back & forth in the boat & use it as a single, too. I'm so thrilled-- got totally hooked on kayaking this summer & this makes every body of water accessible. So exciting.
Monday, September 17, 2007
nose wiping
Ah, Mama's behind on blogging again. I'll blame it on busy @ work, 2 1/2-day workshop Thur-Fri-Sat, & serious upcoming changes in our family situation.
Let me just say now that while Lars & I just had a 99% sweet & wonderful morning, I completely spoiled it at the end with the dreaded nose wiping.
I warn him, I let him feel the wipey, I sing a little song about it, I touch the nose area gently with my fingers first to try to desensitize it, I wipe gingerly, I apologize profusely...nothing seems to touch the trauma that is nose wiping. 15 verses of Wheels on the Bus while rocking in his favorite chair & nuzzling barely lessened the sting.
Why? Why is nose wiping such a big deal? Am I really supposed to let the crusty stuff sit there? Should I sneak in while he's asleep? No. I know. I just wipe the nose as respectfully as possible & deal with the fallout.
I don't get to see Lars again today awake, so why did I chose the last ten minutes before getting on the bus to assault the nose?
It was there.
Let me just say now that while Lars & I just had a 99% sweet & wonderful morning, I completely spoiled it at the end with the dreaded nose wiping.
I warn him, I let him feel the wipey, I sing a little song about it, I touch the nose area gently with my fingers first to try to desensitize it, I wipe gingerly, I apologize profusely...nothing seems to touch the trauma that is nose wiping. 15 verses of Wheels on the Bus while rocking in his favorite chair & nuzzling barely lessened the sting.
Why? Why is nose wiping such a big deal? Am I really supposed to let the crusty stuff sit there? Should I sneak in while he's asleep? No. I know. I just wipe the nose as respectfully as possible & deal with the fallout.
I don't get to see Lars again today awake, so why did I chose the last ten minutes before getting on the bus to assault the nose?
It was there.
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