Little Larsy is sick. Still? Again? Hard to tell. He had a touch of pneumonia, went on a 10-day round of anti-biotics, and then right when he got off he spiked a fever & threw up 15 times in a night (Saturday night). He's been home from school all week, and last night was up to 104°. I got it down to 100° with tylenol & a cool bath. We'll see how he feels today.
It's very sad to miss Halloween @ Perkins! Such a sensory experience. Sigh.
Wednesday, October 31, 2007
Sunday, October 21, 2007
trade-off
Such an intense trade-off: eating and drinking for feeling good. Woah.
Really seems to me that the neurontin--which by all accounts appears to be what soothed Lars' terrible pain from last winter & has kept it at bay--has almost completely erased his appetite, desire to eat, willingness to allow food & drink past his lips... This morning he had explosive diarrhea and threw up all his meds (I think the amoxicillin is getting to him), and even in the wake of that I tried & tried to get him to drink a little sip of water to clear his mouth of all that nastiness. No go. Nothing. He eats a few bites a week, here & there. Some weeks he drinks some sips, others nothing.
This is a boy who used to love to eat. And drink.
But this is also a boy who used to scream for hours and days and weeks on end, and now he's happy.
Really seems to me that the neurontin--which by all accounts appears to be what soothed Lars' terrible pain from last winter & has kept it at bay--has almost completely erased his appetite, desire to eat, willingness to allow food & drink past his lips... This morning he had explosive diarrhea and threw up all his meds (I think the amoxicillin is getting to him), and even in the wake of that I tried & tried to get him to drink a little sip of water to clear his mouth of all that nastiness. No go. Nothing. He eats a few bites a week, here & there. Some weeks he drinks some sips, others nothing.
This is a boy who used to love to eat. And drink.
But this is also a boy who used to scream for hours and days and weeks on end, and now he's happy.
Thursday, October 18, 2007
feeling better
Larsy is feeling better. He even went back to school today, and ran a 3 hour feed with not one gag. His communication book from school said, "Lars had a pretty good day back at school." He was certainly happy to be headed that way this morning, and totally and completely exhausted by 6:30 tonight, sweet little pumpkin mine.
We're all having an early bedtime tonight. Zzzzzzzz.
We're all having an early bedtime tonight. Zzzzzzzz.
Tuesday, October 16, 2007
pneumonia
Yikes it's been a long time since I've posted. I'll work backwards. Lars was diagnosed this afternoon with pneumonia. He's pretty spunky for a guy with pneumonia, and both Dr. Richie Cunningham and Lars' wonderful PT Alice said they heard the rattle, but it's not too extensive at this point. He's on amoxicillin 3x/day for 10 days. He's never had pneumonia before & it's a bit freaky for me because I get so dreadfully sick with pneumonia. Hopefully he didn't inherit that from me. He threw up four times this morning, so he stayed home from school. Little Richie is thinking the stomach stuff is because of the pneumonia. He's getting pedialyte via g-tube instead of pediasure now.
He's been sick off & on for a couple weeks now, little munchkin, and his gagging has radically increased. We were running his g-tube feedings at 200 ml/hr when he was awake, and now we're running between 50 & 70 when he's awake, otherwise he'll gag & throw up. Big difference. I'm really hoping the antibiotics just clear things up & we can move on. He'll be home from school again tomorrow.
I'll get around to photos later, but we had fun this past Sunday going apple...searching. We didn't get to pick them because we arrived a few minutes after they stopped selling the bag to purchase them, but we sought them out & felt the leaves & rolled down the hill (Joa with his body & Lars in his jogging stroller) & had a bunch of fun.
What have the other highlights been from the past few weeks? Hmmm... Definitely kayaking the night before and the night of the full Harvest Moon- that was totally amazing.
Well, and the major reason I haven't posted is that Andey has told me she wants a separation/divorce, and I've been having a LOT of feelings that aren't necessarily appropriate for me to post here. We are currently working with a mediator who is very skilled, and trying to work out arrangements. I am doing everything I can to make sure the kids can stay in one house (Ash Street) and have us trade off. Everyone I've ever talked to who is an adult whose parents divorced said the worst part is going from place to place and not feeling like you fully belong in either place, or that either place is really yours. Some of your stuff is one place, and other stuff isn't & the kids experience this as very stressful. Besides, it's the adults who can handle inconvenience better, and who are the cause of the inconvenience, so we should be the ones who take it on. My opinion.
We don't have any answers yet, but are in the process. It's very sad.
He's been sick off & on for a couple weeks now, little munchkin, and his gagging has radically increased. We were running his g-tube feedings at 200 ml/hr when he was awake, and now we're running between 50 & 70 when he's awake, otherwise he'll gag & throw up. Big difference. I'm really hoping the antibiotics just clear things up & we can move on. He'll be home from school again tomorrow.
I'll get around to photos later, but we had fun this past Sunday going apple...searching. We didn't get to pick them because we arrived a few minutes after they stopped selling the bag to purchase them, but we sought them out & felt the leaves & rolled down the hill (Joa with his body & Lars in his jogging stroller) & had a bunch of fun.
What have the other highlights been from the past few weeks? Hmmm... Definitely kayaking the night before and the night of the full Harvest Moon- that was totally amazing.
Well, and the major reason I haven't posted is that Andey has told me she wants a separation/divorce, and I've been having a LOT of feelings that aren't necessarily appropriate for me to post here. We are currently working with a mediator who is very skilled, and trying to work out arrangements. I am doing everything I can to make sure the kids can stay in one house (Ash Street) and have us trade off. Everyone I've ever talked to who is an adult whose parents divorced said the worst part is going from place to place and not feeling like you fully belong in either place, or that either place is really yours. Some of your stuff is one place, and other stuff isn't & the kids experience this as very stressful. Besides, it's the adults who can handle inconvenience better, and who are the cause of the inconvenience, so we should be the ones who take it on. My opinion.
We don't have any answers yet, but are in the process. It's very sad.
Sunday, September 23, 2007
3-party weekend & Happy Autumnal Equinox
Autumnal Equinox, Mabon, is today. Mama's time of year has arrived. Aaaahhh.....red, orange, russet, yellow.....maroon, brown, gold, auburn.....wine, gourds, pine cones, acorns.....apples, pomegranates, seeds, corn.....honeysuckle, marigold, milkweed, sage.....nuts, potatoes, carrots, onions.....protection, prosperity, security, self-confidence.....
Busy weekend. Saturday Lars & I went to a friend's 3rd birthday party in Lawrence (can't wait to get copies of the photos to post-- adorable). They decorated straw hats & had a tea party. Lars actually fussed a great deal, feeling sometimes out of sorts. Today brought a great hike in Wakefield for Mama's friend's 39th birthday, followed by hands-down the best ice cream I've ever had at Richardson's in Middleton.
Then off to Watertown for Joa's friend's 12th birthday party consisting of outdoor laser tag. Way fun. 
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. 
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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