I hate to talk in the morning. I really do. I hate mornings in general, but speaking in the morning is incredibly annoying. Either direction: I hate being spoken to and I hate speaking. Wheeler, on the other hand, talks alot in the morning. Its good in a way because he gets Offspring up and moving, and Offspring is talkative in the morning, so they talk to each other. But the other day, Wheeler was hungry when he woke up. And here went our conversation, approximately....
What do we have for breakfast?
(silence)
Do we have anything to eat?
muhhhahhhhpft
Do we have any cereal?
rumphfff
Yes, we do?
mmmmm mmmmm
What kind?
reareeeerohs (said without opening my mouth)
Regular?
nuhhuh
Honey nut?
(silence ... hoping he'll think I died, call 911 and ask them to bring breakfast on the way to pick up my dead body)
Honey nut?
Fwwwwwwwwwuittteee msmmmmaaaqqqffffttt
Hmmmm. Do we have eggs?
Yeah (with a snarl)
Oatmeal?
YES!
Toast?
(silence)
Well, when you are done getting Offspring's breakfast could I get a bowl of cereal?
(silence) .... thinking, geez, if you were gonna eat cereal all along, why the 3rd degree about all other possible breakfast options?
Hello?
YES!!!!!! I heard you, whatever. Geesh.
OK.
(glare)
What?
Do I look like a short order cook?! ..... (pause).... Wait. Don't answer that.
Wednesday, April 29, 2009
Tuesday, April 28, 2009
Air show
We went up to the Langley Air Show this past weekend and it was really fun. We stay at his dad's place when we go up, they live very close to Langley AFB, and we just love them to pieces, so its always a nice time. This year Pappy and Gma E didn't go with us because Pappy is still very tired from chemo. While he is officially in remission now, the last 7 months took alot out of him and he is still doing maintenance chemo every 2 months.
As we were driving up, we stopped to eat at Smithfield BBQ in Zebulon. I love Smithfield, although ever since one opened very close to our house, I am kinda tired of it. But, we hadn't gone there in a long time, plus, I can eat there if I can convince them to LEAVE THE HUSHPUPPIES OFF MY PLATE, so that's where we stopped for lunch. Dog, as always, caused a stir. A young guy working there came up and said "Is she part Bichon Frise?". Really. That's what he said. I swear. I tried really, really, really hard not to laugh (at least until he was out of sight). Offspring was being very charming, and Wheeler struck up a conversation with a really nice older couple since a table over. In the spirit of a its a small world after all, turns out she had worked at vocational rehabilitation for the state, which is where Wheeler received many benefits, such as his computer programming education. They didn't cross paths there directly, but the two of them have in a common a friend. They own a horse farm and it would be really nice to look them up and take the dogs out there to run.
As we were driving after lunch, I can't remember the context, but Offspring was explaining a situation in which he was exasperated. Except it came out as exhausterated. It was very funny. When the word is bigger than your tongue, it can be hard to spit it out. Which also reminds me of another funny thing he said the other day. He was brushing his teeth downstairs, and as such, he had to use my NON CHILD toothpaste, meaning, it does not taste like some godforsaken flavor like bubblegum. I warned him the toothpaste was not his godforsaken bubblegum flavor, but rather mint (which I love and he hates .... is he *really* my child??? I LOVE mint anything). He was cool with that, although he grimaced and groaned whilst brushing, much the same as I do when forced to brush with godforsaken bubblegum toothpaste. Afterwards, I handed him a little cup of mouthwash to rinse. He put it in his mouth, swished it around while his eyes got bigger and bigger and bigger. He spit it out eventually and said "was that some kind of sick joke?!?!?!". It finally occurred to me he meant that the mouthrinse was mint, not kid's godforsaken bubblegum Act. It struck my funny bone, and I couldn't stop giggling about it. Offspring was less amused however and stalked off with his hands on his hips glaring at me. It still makes me laugh to even write it out!
Back to the air show, we knew from last year that it would be a very long, very hot day. It decided this year to go directly from winter to summer, do not pass spring, don't forget to collect your sunscreen. We brought chairs to sit in, well, at least for me and Offspring, Wheeler has a permanent place to sit unfortunately. But we don't really sit around in one place at the air show, and I was afraid of the chairs getting stolen, or more likely, me forgetting them when we left. Plus they were rather heavy and the line was reallllllllllllllllly long to get in. So I chucked the chairs back in and at the suggestion of Wheeler, hoisted out the manual chair that we keep in the back of the van at all times for emergencies. I plopped Offspring in it, threw my purse on the back of it and off we went. I realized that I had the sympathies of every single person there because I had a disabled husband AND a disabled child. Except, I really don't. So practically every person we saw I made a point of saying the manual chair was a stroller of sorts. Except when we went through the gate, I didn't want them to confiscate the manual chair, so I just told Offspring to sit down and stay quiet.
Even though the line was honestly the longest line I've ever seen in my life for anything, it went so quickly. I love military precision, these dudes know how to get 100,000 people from point A to point B quickly and efficiently. Although when we were about 2/3 of the way to the front of the line, a couple of GIs came up and pulled us out of line to go around front and bypass security. So my worrying was for nothing, we sailed right through. They just said "do you have anything sharp?" to which we said "no" and they waived us through without searching and without me or Offspring going through the metal detector. I swear, the best terrorists would be disabled terrorists or people accompanying disabled people. You can get away with bringing anything anywhere if you're in a chair.
When we first got in we took a tour of a nifty hospital that is made entirely from stuff you can fit in (alot of) backpacks. They can parachute in from anywhere and be fully set up as a hospital, including isolation units, hazmat cleaning, an ICU, 2 operating rooms, patient wards and even a dental chair within 48 hours. They set it up in 18 hours in the practice run setting it up for the air show. We got a personal tour from the guy in charge of setting it up and it was really interesting. We also found that the hospital is fully air conditioned and the ICU is really, really cold. So we went there for a break at one point to get Wheeler out of the sun, and I needed the break too. I was pushing around a kid in a chair don't forget!
At the very end of the day, the Thunderbirds flew and it was verrrrrrrrrrrrrry cool. But part way through it, we were all overheating, Dog too, and so we decided to finish watching the show in the shade. Wheeler moved to back up and then stopped. He said "Look". I turned and looked. And saw that the cup for his chin control has melted. M.E.L.T.E.D. It was turned inside out and oozing down the sides. I shit you not!!! My eyes got as big as saucers and I said "well that's a new one!". He fiddled about for awhile and managed to be able to drive it anyway, but it was pretty sketchy. He had very little control because he had no traction on his chin, and so it was a scary roll out of there. We managed to get to the van and get back to his dad's despite it all (major props to Wheeler, that man can roll with the punches, that's for sure). His dad took a suction cup intended for sticking on a window to hang things from, cut off the metal piece, ran a drill through the base of it then mounted it in place of the melted cup (which looks like the chin cup knob here, 3rd thing down). Then we covered it with bandaids because the plastic was super slick, and that's how it remains now. We are trying to get another one ordered. I'm trying to decide if the cost will be in the 2 or 3 digits. My guess is $76. Anybody else want to guess? Whoa, I just went to the link to make sure I linked it correctly and the prices are at the bottom. $79. I am GOOD. Just call me the just-how-much-will-you-get-screwed-out-of-because-its-technically-a-medical-item whisperer.
Regardless of the melted chin cup, it was a very fun day. Offspring got to meet the F-22 Raptor pilots who flew that day (and they all were so young, omg I am old). He got an autographed patch, an autographed photo and an autographed hat. He was really excited about meeting the pilots, which was fun to see. He's usually so nonchalant about everything (exception: Star Wars) that I liked seeing him truly excited about something constructive.
As we were driving up, we stopped to eat at Smithfield BBQ in Zebulon. I love Smithfield, although ever since one opened very close to our house, I am kinda tired of it. But, we hadn't gone there in a long time, plus, I can eat there if I can convince them to LEAVE THE HUSHPUPPIES OFF MY PLATE, so that's where we stopped for lunch. Dog, as always, caused a stir. A young guy working there came up and said "Is she part Bichon Frise?". Really. That's what he said. I swear. I tried really, really, really hard not to laugh (at least until he was out of sight). Offspring was being very charming, and Wheeler struck up a conversation with a really nice older couple since a table over. In the spirit of a its a small world after all, turns out she had worked at vocational rehabilitation for the state, which is where Wheeler received many benefits, such as his computer programming education. They didn't cross paths there directly, but the two of them have in a common a friend. They own a horse farm and it would be really nice to look them up and take the dogs out there to run.
As we were driving after lunch, I can't remember the context, but Offspring was explaining a situation in which he was exasperated. Except it came out as exhausterated. It was very funny. When the word is bigger than your tongue, it can be hard to spit it out. Which also reminds me of another funny thing he said the other day. He was brushing his teeth downstairs, and as such, he had to use my NON CHILD toothpaste, meaning, it does not taste like some godforsaken flavor like bubblegum. I warned him the toothpaste was not his godforsaken bubblegum flavor, but rather mint (which I love and he hates .... is he *really* my child??? I LOVE mint anything). He was cool with that, although he grimaced and groaned whilst brushing, much the same as I do when forced to brush with godforsaken bubblegum toothpaste. Afterwards, I handed him a little cup of mouthwash to rinse. He put it in his mouth, swished it around while his eyes got bigger and bigger and bigger. He spit it out eventually and said "was that some kind of sick joke?!?!?!". It finally occurred to me he meant that the mouthrinse was mint, not kid's godforsaken bubblegum Act. It struck my funny bone, and I couldn't stop giggling about it. Offspring was less amused however and stalked off with his hands on his hips glaring at me. It still makes me laugh to even write it out!
Back to the air show, we knew from last year that it would be a very long, very hot day. It decided this year to go directly from winter to summer, do not pass spring, don't forget to collect your sunscreen. We brought chairs to sit in, well, at least for me and Offspring, Wheeler has a permanent place to sit unfortunately. But we don't really sit around in one place at the air show, and I was afraid of the chairs getting stolen, or more likely, me forgetting them when we left. Plus they were rather heavy and the line was reallllllllllllllllly long to get in. So I chucked the chairs back in and at the suggestion of Wheeler, hoisted out the manual chair that we keep in the back of the van at all times for emergencies. I plopped Offspring in it, threw my purse on the back of it and off we went. I realized that I had the sympathies of every single person there because I had a disabled husband AND a disabled child. Except, I really don't. So practically every person we saw I made a point of saying the manual chair was a stroller of sorts. Except when we went through the gate, I didn't want them to confiscate the manual chair, so I just told Offspring to sit down and stay quiet.
Even though the line was honestly the longest line I've ever seen in my life for anything, it went so quickly. I love military precision, these dudes know how to get 100,000 people from point A to point B quickly and efficiently. Although when we were about 2/3 of the way to the front of the line, a couple of GIs came up and pulled us out of line to go around front and bypass security. So my worrying was for nothing, we sailed right through. They just said "do you have anything sharp?" to which we said "no" and they waived us through without searching and without me or Offspring going through the metal detector. I swear, the best terrorists would be disabled terrorists or people accompanying disabled people. You can get away with bringing anything anywhere if you're in a chair.
When we first got in we took a tour of a nifty hospital that is made entirely from stuff you can fit in (alot of) backpacks. They can parachute in from anywhere and be fully set up as a hospital, including isolation units, hazmat cleaning, an ICU, 2 operating rooms, patient wards and even a dental chair within 48 hours. They set it up in 18 hours in the practice run setting it up for the air show. We got a personal tour from the guy in charge of setting it up and it was really interesting. We also found that the hospital is fully air conditioned and the ICU is really, really cold. So we went there for a break at one point to get Wheeler out of the sun, and I needed the break too. I was pushing around a kid in a chair don't forget!
At the very end of the day, the Thunderbirds flew and it was verrrrrrrrrrrrrry cool. But part way through it, we were all overheating, Dog too, and so we decided to finish watching the show in the shade. Wheeler moved to back up and then stopped. He said "Look". I turned and looked. And saw that the cup for his chin control has melted. M.E.L.T.E.D. It was turned inside out and oozing down the sides. I shit you not!!! My eyes got as big as saucers and I said "well that's a new one!". He fiddled about for awhile and managed to be able to drive it anyway, but it was pretty sketchy. He had very little control because he had no traction on his chin, and so it was a scary roll out of there. We managed to get to the van and get back to his dad's despite it all (major props to Wheeler, that man can roll with the punches, that's for sure). His dad took a suction cup intended for sticking on a window to hang things from, cut off the metal piece, ran a drill through the base of it then mounted it in place of the melted cup (which looks like the chin cup knob here, 3rd thing down). Then we covered it with bandaids because the plastic was super slick, and that's how it remains now. We are trying to get another one ordered. I'm trying to decide if the cost will be in the 2 or 3 digits. My guess is $76. Anybody else want to guess? Whoa, I just went to the link to make sure I linked it correctly and the prices are at the bottom. $79. I am GOOD. Just call me the just-how-much-will-you-get-screwed-out-of-because-its-technically-a-medical-item whisperer.
Regardless of the melted chin cup, it was a very fun day. Offspring got to meet the F-22 Raptor pilots who flew that day (and they all were so young, omg I am old). He got an autographed patch, an autographed photo and an autographed hat. He was really excited about meeting the pilots, which was fun to see. He's usually so nonchalant about everything (exception: Star Wars) that I liked seeing him truly excited about something constructive.
Wednesday, April 15, 2009
It all depends on how you look at it....
Last night ....
Me: "Ergh. These pants I just bought are too long"
Wheeler: "Maybe your legs are just too short"
She dissolves into a fit of giggles.
Me: "Ergh. These pants I just bought are too long"
Wheeler: "Maybe your legs are just too short"
She dissolves into a fit of giggles.
Monday, April 13, 2009
Closed loop quad system
Having a quadriplegic husband means I get to do everything twice, and the twice time takes longer. Its harder to brush someone else's teeth than yours, it takes longer to shower someone else than to shower yourself etc. When Wheeler is in bed there are a number of things that need to be done regularly that never, ever, ever, ever seem to end. Just as I think everything is done, something else needs to be done. Filling up his water bottle, giving him meds, emptying the bed bag, range of motion, brushing teeth, moving the straw, moving the blankets and scratching his head/face/shoulders are the primary ones. So I've been daydreaming of a Wallace and Grommit style invention to help me out.
(imagine dreamlike wavy lines here ....)
Patent Application: Q8Y-4726T
Date of Application: April 13, 2009
Invention Name: Closed Loop Quad Containment System
Upon placing one's beloved quadriplegic in bed, hook straw directly up to the city water main for a continuous supply of fresh water. Then, hook catheter bag up to a tube attached to a hole in the floor that runs directly to the city sewer city for disposal. An arm will then come out of the wall and dump a small cup of meds into the mouth using an electronic eye sensor. The medication cup will be filled up by the operator once a month, with dispensing automated. A similar system will dispense toothpaste onto a toothbrush, will brush the teeth and dump mouthwash into the mouth. A spit cup will be presented which will be dumped into the sewer connection previously described. Robotic cushioned claws will then drop down from the ceiling, carefully grasping each limb and will proceed to rotate them around in various directions to fully stretch the major muscle groups. During this, a hand with nice pointy fingernails will come directly out of the wall, grasp the head and will scratch for at least 5 minutes in a circular motion around the head. Once a week, the robotic arms will automatically cut fingernails and toenails. Next, similar to a sprayer car wash, the system will spray a fine mist of baby oil onto each body part to ensure smooth supple skin. The robotic arm will then open the freezer installed next to the bed for the nightly ice cream feeding. It will scoop out ice cream, feed it to the subject, then rinse and steam wash the bowl and return it to the bowl holder system for the next day. After completion of all tasks, the robotic claws will pull the sheet and blanket up over the head.
Wouldn't that be nice? I guess it's kinda hard to appreciate the constantcy of it until you do this stuff day in and day out for years. When I went to NZ, our PCA nearly flipped out from the stress of 24/7 care and she only did it for 16 days. In a way I felt triumphant upon my return - "HA! See, I am goddess of caregiving!". Then again, it also showed me just how much I do .... which I try not to think about too much or it overwhelms me.
But when I patent my quad containment system, I'll have alot less work to do.
Closed loop quad containment system
Having a quadriplegic husband means I get to do everything twice, and the twice time takes longer. Its harder to brush someone else's teeth than yours, it takes longer to shower someone else than to shower yourself etc. When Wheeler is in bed there are a number of things that need to be done regularly that never, ever, ever, ever seem to end. Just as I think everything is done, something else needs to be done. Filling up his water bottle, giving him meds, emptying the bed bag, range of motion, brushing teeth, moving the straw, moving the blankets and scratching his head/face/shoulders are the primary ones. So I've been daydreaming of a Wallace and Grommit style invention to help me out.
(imagine dreamlike wavy lines here ....)
Patent Application: Q8Y-4726T
Date of Application: April 13, 2009
Invention Name: Closed Loop Quad Containment System
Upon placing one's beloved quadriplegic in bed, hook straw directly up to the city water main for a continuous supply of fresh water. Then, hook catheter bag up to a tube attached to a hole in the floor that runs directly to the city sewer city for disposal. An arm will then come out of the wall and dump a small cup of meds into the mouth using an electronic eye sensor. The medication cup will be filled up by the operator once a month, with dispensing automated. A similar system will dispense toothpaste onto a toothbrush, will brush the teeth and dump mouthwash into the mouth. A spit cup will be presented which will be dumped into the sewer connection previously described. Robotic cushioned claws will then drop down from the ceiling, carefully grasping each limb and will proceed to rotate them around in various directions to fully stretch the major muscle groups. During this, a hand with nice pointy fingernails will come directly out of the wall, grasp the head and will scratch for at least 5 minutes in a circular motion around the head. Once a week, the robotic arms will automatically cut fingernails and toenails. Next, similar to a sprayer car wash, the system will spray a fine mist of baby oil onto each body part to ensure smooth supple skin. The robotic arm will then open the freezer installed next to the bed for the nightly ice cream feeding. It will scoop out ice cream, feed it to the subject, then rinse and steam wash the bowl and return it to the bowl holder system for the next day. After completion of all tasks, the robotic claws will pull the sheet and blanket up over the head.
Wouldn't that be nice? I guess it's kinda hard to appreciate the constantcy of it until you do this stuff day in and day out for years. When I went to NZ, our PCA nearly flipped out from the stress of 24/7 care and she only did it for 16 days. And his mom literally fled the house after less than 72 hours of caregiving when I went to Portland (leaving before I was even back!). In a way I felt triumphant upon my returns - "HA! See, I am goddess of caregiving!". Then again, it also showed me just how much I do .... which I try not to think about too much or it overwhelms me.
But when I patent my quad containment system, I'll have alot less work to do.
(imagine dreamlike wavy lines here ....)
Patent Application: Q8Y-4726T
Date of Application: April 13, 2009
Invention Name: Closed Loop Quad Containment System
Upon placing one's beloved quadriplegic in bed, hook straw directly up to the city water main for a continuous supply of fresh water. Then, hook catheter bag up to a tube attached to a hole in the floor that runs directly to the city sewer city for disposal. An arm will then come out of the wall and dump a small cup of meds into the mouth using an electronic eye sensor. The medication cup will be filled up by the operator once a month, with dispensing automated. A similar system will dispense toothpaste onto a toothbrush, will brush the teeth and dump mouthwash into the mouth. A spit cup will be presented which will be dumped into the sewer connection previously described. Robotic cushioned claws will then drop down from the ceiling, carefully grasping each limb and will proceed to rotate them around in various directions to fully stretch the major muscle groups. During this, a hand with nice pointy fingernails will come directly out of the wall, grasp the head and will scratch for at least 5 minutes in a circular motion around the head. Once a week, the robotic arms will automatically cut fingernails and toenails. Next, similar to a sprayer car wash, the system will spray a fine mist of baby oil onto each body part to ensure smooth supple skin. The robotic arm will then open the freezer installed next to the bed for the nightly ice cream feeding. It will scoop out ice cream, feed it to the subject, then rinse and steam wash the bowl and return it to the bowl holder system for the next day. After completion of all tasks, the robotic claws will pull the sheet and blanket up over the head.
Wouldn't that be nice? I guess it's kinda hard to appreciate the constantcy of it until you do this stuff day in and day out for years. When I went to NZ, our PCA nearly flipped out from the stress of 24/7 care and she only did it for 16 days. And his mom literally fled the house after less than 72 hours of caregiving when I went to Portland (leaving before I was even back!). In a way I felt triumphant upon my returns - "HA! See, I am goddess of caregiving!". Then again, it also showed me just how much I do .... which I try not to think about too much or it overwhelms me.
But when I patent my quad containment system, I'll have alot less work to do.
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