Update for the week
Apr. 4th, 2009 03:17 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
vaxjediSo this was the week that Miri was off her clonidine. She's been on similar med ever since she was 2 yrs old. It was also her spring break (we timed it like that so she wouldn't be at school during the week without meds. I took the week off (some of it without pay) so I could help, and we sent the kids down to their grandparents so we could focus only on Miri.
Here's my summary of the week.
Saturday - First day with no meds. Miri is out of control and provoking her siblings like crazy. We need to restrain her rather significantly, and I come out of it with two bite marks, a slightly black eye and bruises on my leg. Stress level is high. Corri is a brat all day long and blows up at any mention that she be doing something besides laying on the couch watching TV. We decide we need to get Miri's new isolation space in her room finished - it needs a door. We have to get one custom made for the frame we have built for it, since we need it to be solid wood and not hollow. With Kris's help, Eleri gets it installed (I stand around and look pretty).
Sunday - Wake up kids as I am taking them to Centralia, where we usually meet Eleri's dad for transferring children. I bring Miri with me so Eleri has time to herself. Kids are yelling and screaming at each other the whole 2 hours. Drop off kids. Miri has a relatively quiet trip back. Eleri and I take Miri to a park in Everett where there is a labyrinth. My hands get so cold that they hurt (despite it being warmer than it has), as I forgot to bring my gloves. We get Miri to actually sleep in her own bed.
Monday - First weekday. Miri sleeps to a respectable time, possibly because I didn't need to get up at 6 for work. She's wet her bed however. She keeps doing that all week. Miri is relatively calm day. She plays a lot in her isolation space. Miri is doing significantly better than I expected, though you can see that her metabolism is running higher than normal.
Tuesday - Miri has not bad day again, though we can see she's much more hyper. Her cheeks are red all of the time and her body radiates heat like crazy. Her cheeks have broken out in acne. The Abilify seems to be keeping her from being aggressive in a mean way. We get nasty text messages from Corri - she is obviously having conflicts with her grandmother and is lashing out and trying to draw us into it. I come to the realization that part of it is because the other kids are not here. Miri becomes more likely to lose control if more people are around (she starts throwing fits when Eleri wakes up, despite being perfectly calm for hours before). Also, her sister specifically gets her into fit mode faster than anyone else. Eleri works on some craft projects. I play some video games while watching Miri. That evening, Greg comes by and we play board games after Miri is asleep.
Wednesday - Miri wakes up at 8ish. She's definitely running a lot faster, though. Her impulse control is way down - she's running back and forth across the house so much that I can't even use the phone because every time I move to another room to get away from the noise, she's run back and forth screaming two or three times. She moves into mischievous, the sort of mischievousthat is based in 'isn't it funny that I can do these naughty things and people make such fun noises when they get angry'. She giggles maniacally a lot, knocks things down from shelves, throws things out of windows and torments the cats. In the evening, I go to my first therapy appointment in years. Nice therapist, but I seem to have stumped her. After 45 mins or explaining our situation, she looks very uncomfortable and says she's unsure if there is anything she can do to help me out - I'm on meds and there aren't really any strategies for dealing with constant trauma other than getting away from the trauma. We come up with a plan of me working with her on issues I need to work on besides the primary ones (i.e. the kids) in the hope that being stronger elsewhere will help me endure the primary crisis. Later on, Eleri and I watch LOST and Life on Mars. After TV, I realize my feet are really cold. I look down (I'm barefoot) and realize my toes are purple. I toss on two pairs of socks in hopes of getting my feet warm.
Thursday - After a hectic morning, I call the dr for an appointment. She confirms what the previous dr thought - I have the symptoms of Reynaud's Syndrome. My previous bloodwork was all normal, so she refers me to a specialist. Miri decides to make a huge mud puddle in the from yard and wallow in it naked. When I get her inside, she tracks it all around. Mail comes and Miri's orthopedic inserts arrive. However, they don't fit into her shoes. So we need to go get new shoes. We have trouble finding a place with the right size for her and her inserts, ending up at the mall. Miri insist on going into the Disney store and getting a toy. When we try to get her to go home, she throws fits and keeps dropping to the ground in the middle of the mall until we have to pick her up to get her moving again. Later, another incident with the mud puddle. We are getting frazzled.
Friday - Miri is running at full speed. Have to save the cats from her again and again. State of the house is getting worse, since she keeps digging through the laundry and tossing it around, digging through toys and tossing them around. Still haven't heard from the doctor yet about her new meds. Eleri is very tired and her stomach is in pain, so she rests some. I go to the store at one point, forget my gloves and realize my fingertips are purple. Miri goes into the mud puddle again, this time taking the mud and plastering the entire front door with it. We consider asking Eleri's parents to keep Corri another week while we get Miri under control, but we remember she has major diabetes appointments on Tuesday (all day) that she can't miss. We are seriously frazzled and Miri is getting violent close to levels that she was a week ago on Saturday. New enclosure ensures I don't get the crap beat out of me this time. Eleri and I stay up late spending time with each other.
Saturday (today) - Miri wakes up at 5am (first day all week she wakes up early, and it's after the one night Eleri and I stay up late). We get message from dr, he has called in Miri's new meds. I'm very tired so I nap for a bit - I'm very cold and my feet hurt again. It's warming than it has been, and I'm wearing a jacket and gloves. Miri has yet another incident with the mud puddle. This time she's buried three pairs of shoes in it, and a Harry Potter book. I go to get Miri's meds - the pharmacist gives me some very funny looks, asks me how old Miri is and insists on getting a hold of the dr about the meds (ostensibly because they only have pills in half dosage than prescribed and he wants to make sure that is okay). I wait around Freddie's and he gets a hold of the dr. Pharmacist seems relieved and gives me the meds after doublechecking that we've been off the previous meds for a week. He tells me "Um... good luck." Right now, Eleri is sleeping, Miri is out front, in the mud puddle again.
Sunday (tomorrow) - Miri gets her first dose of the new meds. I go to pick up Corri from her grandparents (Kris is staying down there longer).
Monday (two days in the future) - I go back to work and tell them I need to take Tuesday off. First day of school for Miri. We attempt to figure out what to do with Corri, who is becoming unmanageable an pretty much an inert human being.
Here's my summary of the week.
Saturday - First day with no meds. Miri is out of control and provoking her siblings like crazy. We need to restrain her rather significantly, and I come out of it with two bite marks, a slightly black eye and bruises on my leg. Stress level is high. Corri is a brat all day long and blows up at any mention that she be doing something besides laying on the couch watching TV. We decide we need to get Miri's new isolation space in her room finished - it needs a door. We have to get one custom made for the frame we have built for it, since we need it to be solid wood and not hollow. With Kris's help, Eleri gets it installed (I stand around and look pretty).
Sunday - Wake up kids as I am taking them to Centralia, where we usually meet Eleri's dad for transferring children. I bring Miri with me so Eleri has time to herself. Kids are yelling and screaming at each other the whole 2 hours. Drop off kids. Miri has a relatively quiet trip back. Eleri and I take Miri to a park in Everett where there is a labyrinth. My hands get so cold that they hurt (despite it being warmer than it has), as I forgot to bring my gloves. We get Miri to actually sleep in her own bed.
Monday - First weekday. Miri sleeps to a respectable time, possibly because I didn't need to get up at 6 for work. She's wet her bed however. She keeps doing that all week. Miri is relatively calm day. She plays a lot in her isolation space. Miri is doing significantly better than I expected, though you can see that her metabolism is running higher than normal.
Tuesday - Miri has not bad day again, though we can see she's much more hyper. Her cheeks are red all of the time and her body radiates heat like crazy. Her cheeks have broken out in acne. The Abilify seems to be keeping her from being aggressive in a mean way. We get nasty text messages from Corri - she is obviously having conflicts with her grandmother and is lashing out and trying to draw us into it. I come to the realization that part of it is because the other kids are not here. Miri becomes more likely to lose control if more people are around (she starts throwing fits when Eleri wakes up, despite being perfectly calm for hours before). Also, her sister specifically gets her into fit mode faster than anyone else. Eleri works on some craft projects. I play some video games while watching Miri. That evening, Greg comes by and we play board games after Miri is asleep.
Wednesday - Miri wakes up at 8ish. She's definitely running a lot faster, though. Her impulse control is way down - she's running back and forth across the house so much that I can't even use the phone because every time I move to another room to get away from the noise, she's run back and forth screaming two or three times. She moves into mischievous, the sort of mischievousthat is based in 'isn't it funny that I can do these naughty things and people make such fun noises when they get angry'. She giggles maniacally a lot, knocks things down from shelves, throws things out of windows and torments the cats. In the evening, I go to my first therapy appointment in years. Nice therapist, but I seem to have stumped her. After 45 mins or explaining our situation, she looks very uncomfortable and says she's unsure if there is anything she can do to help me out - I'm on meds and there aren't really any strategies for dealing with constant trauma other than getting away from the trauma. We come up with a plan of me working with her on issues I need to work on besides the primary ones (i.e. the kids) in the hope that being stronger elsewhere will help me endure the primary crisis. Later on, Eleri and I watch LOST and Life on Mars. After TV, I realize my feet are really cold. I look down (I'm barefoot) and realize my toes are purple. I toss on two pairs of socks in hopes of getting my feet warm.
Thursday - After a hectic morning, I call the dr for an appointment. She confirms what the previous dr thought - I have the symptoms of Reynaud's Syndrome. My previous bloodwork was all normal, so she refers me to a specialist. Miri decides to make a huge mud puddle in the from yard and wallow in it naked. When I get her inside, she tracks it all around. Mail comes and Miri's orthopedic inserts arrive. However, they don't fit into her shoes. So we need to go get new shoes. We have trouble finding a place with the right size for her and her inserts, ending up at the mall. Miri insist on going into the Disney store and getting a toy. When we try to get her to go home, she throws fits and keeps dropping to the ground in the middle of the mall until we have to pick her up to get her moving again. Later, another incident with the mud puddle. We are getting frazzled.
Friday - Miri is running at full speed. Have to save the cats from her again and again. State of the house is getting worse, since she keeps digging through the laundry and tossing it around, digging through toys and tossing them around. Still haven't heard from the doctor yet about her new meds. Eleri is very tired and her stomach is in pain, so she rests some. I go to the store at one point, forget my gloves and realize my fingertips are purple. Miri goes into the mud puddle again, this time taking the mud and plastering the entire front door with it. We consider asking Eleri's parents to keep Corri another week while we get Miri under control, but we remember she has major diabetes appointments on Tuesday (all day) that she can't miss. We are seriously frazzled and Miri is getting violent close to levels that she was a week ago on Saturday. New enclosure ensures I don't get the crap beat out of me this time. Eleri and I stay up late spending time with each other.
Saturday (today) - Miri wakes up at 5am (first day all week she wakes up early, and it's after the one night Eleri and I stay up late). We get message from dr, he has called in Miri's new meds. I'm very tired so I nap for a bit - I'm very cold and my feet hurt again. It's warming than it has been, and I'm wearing a jacket and gloves. Miri has yet another incident with the mud puddle. This time she's buried three pairs of shoes in it, and a Harry Potter book. I go to get Miri's meds - the pharmacist gives me some very funny looks, asks me how old Miri is and insists on getting a hold of the dr about the meds (ostensibly because they only have pills in half dosage than prescribed and he wants to make sure that is okay). I wait around Freddie's and he gets a hold of the dr. Pharmacist seems relieved and gives me the meds after doublechecking that we've been off the previous meds for a week. He tells me "Um... good luck." Right now, Eleri is sleeping, Miri is out front, in the mud puddle again.
Sunday (tomorrow) - Miri gets her first dose of the new meds. I go to pick up Corri from her grandparents (Kris is staying down there longer).
Monday (two days in the future) - I go back to work and tell them I need to take Tuesday off. First day of school for Miri. We attempt to figure out what to do with Corri, who is becoming unmanageable an pretty much an inert human being.
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