Yeah. Me neither. No flowers or big delivery of any kind. We still get mail and Shane goes to work. Seems kind of pointless to me. Oh, and just for the record, last month was national MS awareness month. A whole month of nothing special. While I'm on the topic, apparently the color code for MS is ORANGE. Why not black? I look good in black. No one looks good in orange. I guess all the other colors got taken first. Its funny, to me, to color code maladies. I'm sure no one else wanted orange. Get a group of MS supporters wearing their snazzy shirts together for a barbeque and guess what it looks like?
Oh, Look! The convicts are here to clean the park! Come on kids, time to go home.
Fortunately, the news feed Shane set up for me to monitor mouse deaths (aka drug trials) alerted me to this important fact. So now I can.... do what I normally do every day.
Since we are on the topic, I had my meeting with Dr.S yesterday. I remembered most of the things I wanted to ask her about so that was a good start. I do have her email, in case I forget something, but have not gotten into habit of sending her links with a 'did you see this article?' attached. That might create a difficult line to walk between Dr/patient and victim/stalker. I would have so many questions.
First off, she has heard of Terry Wahl's and her diet. Like me, she is skeptical of one person's diet change becoming a cure. Going from wheel-chair bound to ambulatory would require major nerve repair. As you age and/or disease progresses your body is less able to repair the damage and recoveries from relapses are less dramatic and just less in general. At least that is how the pathogenesis of MS has been observed so far. But since they do not know exactly why the damage happens in the first place, or the mechanisms by which they happen, I think there is room for lots of research and discoveries.
Just because something is not the result of a big expensive drug does not mean it didn't happen. So there is skepticism to be had all around. Most of the drugs out there are only about X% effective anyway for X% of patients (my statistic, so quote it loosely). Nothing has been found to reliably make a huge impact on a huge number of people yet. So they just keep coming up with new expensive drugs to treat, or kill a few, patients.
We discussed my particular state and what might be helpful. She did not give me a 'free massages for life' gift card, but she did recommend seeing one of the therapists there to help think through what lifestyle changes might be beneficial. So I might have another chance of winning a gift card.
I asked again about the exercise/gimpy legs correlation vs causation vs whatever. She said it was just time. I was due for it. Which would be great if I had a calendar and could plan. Wine tasting? Oh wait, my tongue is due to be numb that week. (That did happen and was one of the funkier episodes I've experienced) She said if there is a worsening that can be recovered from in an hour of quiet time, the activity is fine to do. If it takes a day or more, I might want to rethink what/how I'm doing things.
An hour of quiet time? I told her that sounded heavenly. Along with impossible.
Make breakfast: rest an hour
Garden: rest an hour.
Make lunch: rest an hour
Costco shopping: rest an hour.
Make dinner: rest an hour.
It probably didn't help that the night before my appointment Malachi was up and restless from 2am-7:30am and the whole house was woken up to smoke alarms going off when Kateri made hashbrowns for him at 5:40. Including Fiona, who then refused to nap until I got home from my appointment at 12:00. So lots of opportunities for quiet restful time in a day. Obviously.
I brought up all the new 'breakthrough research' reported in the headlines in the past couple months. Again, it was, 'Its all very interesting. We'll see how things go from here. It really comes down to trials and results. With humans. And years, and more years of trials.'
I brought up the micro biome, or whatever its called, research being done and it is still 'we're not really sure, but we're looking into it.' There is one trial specifically focusing on it, but it requires being on a particular drug, Tecfidera, which in addition to helping drugs get across the blood brain barrier, also allows non-drugs and potentially fatal particles to get to the brain. So not super exciting. Given that Fiona is still nursing Dr. S would not, nor would I ,be comfortable with any of the 2nd line drugs, which mess with the blood brain barrier and cross into breast milk. So it would be back to the older 1st line drugs. Meaning needles. Lots of needles. And scar tissue. And I'm not sure I could even get a needle in anywhere anymore due to said scar tissue. If I knew it might help, I might try and work them in, but after flunking the last two I'm not so certain they are worth it.
For now we decided to wait another 6 months, then regroup and see where Fiona is on the nursing timeline and I'll keep studying up on the therapies she would recommend Tysabri, Gilenya, or Tecfidera. I don't know why she kept leaving out massages, like it wasn't even an option. I think I might just go to Canada and get one. I hear you don't even need a prescription up there.
So there it is. Just in time for National MS Awareness Day. Now you are painfully aware how difficult getting a massage out of your neurologist really is. Thankfully, Shane is not a neurologist.
Wednesday, May 27, 2015
Monday, May 25, 2015
Down The Rabbit Holes
Warning: If you do not or have not dealt extensively with small children or are currently soon to be embarking on said dealings, move on. This post is probably not for you. If you have a sensitive stomach this post is not for you. If you have no interest in reading somewhat useless ramblings about trials, sciency things, and other peoples' (ok, my) current obsessions, you know what to do. Anyone? Bueller? Now that we've whittled down to a brave few, or none, here we go.
The first rabbit hole is actually a heating vent.
Malachi is still toilet "training". By training I mean he does what and where he wants and everyone else dons hazmat gear and tries to keep it together while cleaning up. So far everyone is responding well to the training. If by cleaning up I meant grabbing some paper towels and lysol spray it would not be so unusual and certainly not worthy of a blog mention. Sadly, that is not the case.
He pretty much gets the brain-body-'ta-da' connection of things. So he's not clueless. Just gross. He mostly does not use the toilet for any other purpose than making fascinating toilet paper swirlys. He is content with a diaper, which is fine with me. Except when he decides to empty the contents of the diaper himself. Which to him means removing the diaper and shaking its contents down an open heat register. Why a heat register? I have no freaking idea. Kids are just gross and grosser still, and I probably looked bored so he prepped a little activity for me while I got Fiona to sleep or was contemplating a coffee or a shower or anything else that I would rather be doing. Instead of playing 'let's go fish for feces'. I am so tired of that game. Just to set the record straight, he does not get rewarded for his antics. I don't know what he does get out of it unless there is some sense of self mastery in it. Why can't self mastery manifest in ways that result in oh, you know, USING A TOILET! Or tying a shoe. Even writing ABC on a piece of furniture. Why this?
His favorite vent has a steep slope and a sharp turn, making retrieval of stuff, difficult and painful. And there is this natural instinct that won't let you just go whole hog in grabbing a rolling poo ball. But gentle feeling around can often result in pushing things farther. And that is one phone call I do not want to make to the heating company. I don't know why this is still a problem after six kids. It never gets easier. Routine, yes. Easier, no.
Once we discover and 'event' I assign someone to dispose of the diaper and someone to keep the babies from the site while I suit up. Usually the kids will offer moral support and help in the form of huddling around saying 'ooh gross!' as I put my arm up to my armpit into the hole. And then if Shane is having a hard day I'll text him and say at least he was not getting this out of a vent. (Anything to elicit a sympathy foot rub) Don't worry, I won't show you. That's disgusting and would get me kicked off the internet. The Elders have their standards. Hopefully the NSA likes the texts. Or not. Serves them right.
But there is an end in sight. Summer is coming and he can run Lord of the Flies in the back yard. And on the off chance he might need just a little extra encouraging on chillier days, we ordered him this. As of yet it has not encouraged him to make dramatic changes to his toileting routines. I'm considering maybe adding some cute big boy undies but I'm not sure I want the extra laundry just yet.
On to a different dig site.
I have a neurologist appointment this week and have been gearing up by compiling a list of 20,000 questions. For an update- a little more feeling has returned to my feet. So that is cool. The stiffness comes and goes and my legs get heavier with every stair until I've got 25lb weights on my ankles at the end of the flight. I have not ventured back to the elliptical but exercise is definitely one topic I'll bring up.
In my in depth research I did come across this gem. I can't wait until they offer weekly massages for everyone. That would certainly improve anyone's quality of life, or just general mood. A couple years back massage therapy was highlighted at an MS talk I went to, as the most beneficial alternative therapy out there. But that was all I ever heard. Nothing about replacing your $50,000 a year injectable medication with weekly massages.
When you start looking into new research, I think in any medical disease, it appears they are always on the cusp of discovering a cure for XYand Z. Or getting closer to discovering the cause of AB and C. Seriously. Try it.
'Zebra fish help shed light on mechanism of re-mylenation. May open door to new therapeutics.'
2 years later.
'7the grader with a microscope in her garage discovers cure!'
3 years later.
'Researchers reverse paralysis in mice with secret compound.'
As one neurologist said, "Its a great time to have MS." If you're a mouse. Person, not so much.
Another interesting study was done on Biotin, or B7, or vitamin H, and a few other names. Just to make looking things up more fun.
My favorite one of late is this one. Can't wait to order my own cocktail some day.
"I'll have an antifungal, with a steroid. Neat."
At least the drugs in the last study are already existing compounds. So that should help speed things up. By about 20 years or so.
Ok. So I'm a little jaded when it comes to medical research actually coming up with new and helpful innovations. In a timely fashion. But when time=progression=sucky, time is of the essence. And time marches, or limps, on.
I will bring up all these studies, and more, to my neurologist. And then I'll schedule a massage.
The first rabbit hole is actually a heating vent.
Malachi is still toilet "training". By training I mean he does what and where he wants and everyone else dons hazmat gear and tries to keep it together while cleaning up. So far everyone is responding well to the training. If by cleaning up I meant grabbing some paper towels and lysol spray it would not be so unusual and certainly not worthy of a blog mention. Sadly, that is not the case.
He pretty much gets the brain-body-'ta-da' connection of things. So he's not clueless. Just gross. He mostly does not use the toilet for any other purpose than making fascinating toilet paper swirlys. He is content with a diaper, which is fine with me. Except when he decides to empty the contents of the diaper himself. Which to him means removing the diaper and shaking its contents down an open heat register. Why a heat register? I have no freaking idea. Kids are just gross and grosser still, and I probably looked bored so he prepped a little activity for me while I got Fiona to sleep or was contemplating a coffee or a shower or anything else that I would rather be doing. Instead of playing 'let's go fish for feces'. I am so tired of that game. Just to set the record straight, he does not get rewarded for his antics. I don't know what he does get out of it unless there is some sense of self mastery in it. Why can't self mastery manifest in ways that result in oh, you know, USING A TOILET! Or tying a shoe. Even writing ABC on a piece of furniture. Why this?
His favorite vent has a steep slope and a sharp turn, making retrieval of stuff, difficult and painful. And there is this natural instinct that won't let you just go whole hog in grabbing a rolling poo ball. But gentle feeling around can often result in pushing things farther. And that is one phone call I do not want to make to the heating company. I don't know why this is still a problem after six kids. It never gets easier. Routine, yes. Easier, no.
Once we discover and 'event' I assign someone to dispose of the diaper and someone to keep the babies from the site while I suit up. Usually the kids will offer moral support and help in the form of huddling around saying 'ooh gross!' as I put my arm up to my armpit into the hole. And then if Shane is having a hard day I'll text him and say at least he was not getting this out of a vent. (Anything to elicit a sympathy foot rub) Don't worry, I won't show you. That's disgusting and would get me kicked off the internet. The Elders have their standards. Hopefully the NSA likes the texts. Or not. Serves them right.
But there is an end in sight. Summer is coming and he can run Lord of the Flies in the back yard. And on the off chance he might need just a little extra encouraging on chillier days, we ordered him this. As of yet it has not encouraged him to make dramatic changes to his toileting routines. I'm considering maybe adding some cute big boy undies but I'm not sure I want the extra laundry just yet.
On to a different dig site.
I have a neurologist appointment this week and have been gearing up by compiling a list of 20,000 questions. For an update- a little more feeling has returned to my feet. So that is cool. The stiffness comes and goes and my legs get heavier with every stair until I've got 25lb weights on my ankles at the end of the flight. I have not ventured back to the elliptical but exercise is definitely one topic I'll bring up.
In my in depth research I did come across this gem. I can't wait until they offer weekly massages for everyone. That would certainly improve anyone's quality of life, or just general mood. A couple years back massage therapy was highlighted at an MS talk I went to, as the most beneficial alternative therapy out there. But that was all I ever heard. Nothing about replacing your $50,000 a year injectable medication with weekly massages.
When you start looking into new research, I think in any medical disease, it appears they are always on the cusp of discovering a cure for XYand Z. Or getting closer to discovering the cause of AB and C. Seriously. Try it.
'Zebra fish help shed light on mechanism of re-mylenation. May open door to new therapeutics.'
2 years later.
'7the grader with a microscope in her garage discovers cure!'
3 years later.
'Researchers reverse paralysis in mice with secret compound.'
As one neurologist said, "Its a great time to have MS." If you're a mouse. Person, not so much.
Another interesting study was done on Biotin, or B7, or vitamin H, and a few other names. Just to make looking things up more fun.
My favorite one of late is this one. Can't wait to order my own cocktail some day.
"I'll have an antifungal, with a steroid. Neat."
At least the drugs in the last study are already existing compounds. So that should help speed things up. By about 20 years or so.
Ok. So I'm a little jaded when it comes to medical research actually coming up with new and helpful innovations. In a timely fashion. But when time=progression=sucky, time is of the essence. And time marches, or limps, on.
I will bring up all these studies, and more, to my neurologist. And then I'll schedule a massage.
Friday, May 1, 2015
Hooray! Age of Ultron is out! I'm so excited!
I will eventually see the movie too. Right now I'm excited because Shane called and said he'd like to take the big kids tonight. I said cool. How about a showing after the babies go to bed?
So they hung around until Malachi was in bed. I got Fi down. And now the house is eerily quiet. With the exception of the baby monitor and the new fan I bought. If it's too quiet I can't sleep so now all my kids are white-noise-addicts. Which works really well for babies with siblings who need to nap.
Fiona especially likes that she can push the power button herself.
At first I didn't know what to do. I originally planned on folding the mound of clean laundry trying to overtake our bedroom. And the kitchen floor could use a good mopping sans baby feet running through leaving prints.
Then I remembered a piece of ancient advice I heard as a new mother.
Remember to make some time for yourself.
Which is really the most ridiculous thing and really just means 'think of all things you won't be able to do for the next 18 years, or maybe ever.' Hello postpartum depression.
Thankfully I am not a new mother any more. In so may ways. So I could actually take the advice. I turned on the hot water, laid out my jammies, and took a hot shower. And then all I could think about was the scene in Psycho. One down side to the sound muffling fan is that is also warps sounds.
Is that the baby? Did someone just knock? Who would call this late at night?
But before the hot water even thought about running out I was able to talk myself out of it and actually enjoy the foamy solitude. With my pink scrubby sponge. Not the same one I bought when I first tried to follow the same advice before Fiona was born. I knew what the new baby stage entailed so to psych myself up I went out and splurged on a $.99 body scrubby thing. I figured if I could make my shower a little more luxurious maybe I wouldn't mind so much the 50,000 other things I couldn't enjoy. I even got some relaxing shower gel. So for $8 I could get a tiny spa experience every morning. Or once a week in the really early baby phase.
Then one morning it came to an end. I saw Shane in the shower and he picked up the scrubby off the shelf and rubbed a spot on the floor.
Horrified, I asked what he was doing.
"Oh, there was just something funky so I thought I clean it."
"Umm. That's not a cleaning scrubby. It's a body scrubby. You just cleaned something funky with the sponge I use to clean me ."
"Oh, I thought it was for cleaning the shower. That's what I use for all the time."
"Well that is what it is for now!" and now the scrubby resides on the shower floor.
I went out and bought a new one. This one was more expensive ( $1.50) and had a little rubber suction cup on it. I showed it to Shane and told him this one is for me, not the floor. It was a preacher shade of pink, not sure how much that matters as he is a little color blind, but I thought color-coding might have positive outcome. He said fine but to keep it off the glass door where it would be too prominent and he might forget what it was supposed to be used for. Well the rubber suctiony thing does not like the tile walls and will only adhere to the glass door.
Which I explained to Shane and so far he's been able to resist the temptation to scrub the shower in the mornings. I did put an actual cleaning sponge on the shelf for him, just in case. So far its working.
Speaking of "Me time", I did schedule an outing for myself. To the dentist. I did try the hair salon first, but they were booked both attempts I made. So I was left with the dentist if I wanted some quiet time. I felt so stoked about it and actually wore jeans for the first time in I don't even know. I thought of wearing earrings but felt the pants were fancy enough and I didn't want the new dentist to think I got dressed up. Just to get my teeth cleaned. Which I did. She didn't seem to notice. Shane did, and told me I looked cute. Twice, before he left to work.
It might finally be the time to get my old wardrobe out, if its not too outdated, and join the rest of the world in doing all the things I haven't' for the past three years. Maybe I can get a new outfit and Shane can take me to the movie. And buy me a new body sponge.
So they hung around until Malachi was in bed. I got Fi down. And now the house is eerily quiet. With the exception of the baby monitor and the new fan I bought. If it's too quiet I can't sleep so now all my kids are white-noise-addicts. Which works really well for babies with siblings who need to nap.
At first I didn't know what to do. I originally planned on folding the mound of clean laundry trying to overtake our bedroom. And the kitchen floor could use a good mopping sans baby feet running through leaving prints.
Then I remembered a piece of ancient advice I heard as a new mother.
Remember to make some time for yourself.
Which is really the most ridiculous thing and really just means 'think of all things you won't be able to do for the next 18 years, or maybe ever.' Hello postpartum depression.
Thankfully I am not a new mother any more. In so may ways. So I could actually take the advice. I turned on the hot water, laid out my jammies, and took a hot shower. And then all I could think about was the scene in Psycho. One down side to the sound muffling fan is that is also warps sounds.
Is that the baby? Did someone just knock? Who would call this late at night?
But before the hot water even thought about running out I was able to talk myself out of it and actually enjoy the foamy solitude. With my pink scrubby sponge. Not the same one I bought when I first tried to follow the same advice before Fiona was born. I knew what the new baby stage entailed so to psych myself up I went out and splurged on a $.99 body scrubby thing. I figured if I could make my shower a little more luxurious maybe I wouldn't mind so much the 50,000 other things I couldn't enjoy. I even got some relaxing shower gel. So for $8 I could get a tiny spa experience every morning. Or once a week in the really early baby phase.
Then one morning it came to an end. I saw Shane in the shower and he picked up the scrubby off the shelf and rubbed a spot on the floor.
Horrified, I asked what he was doing.
"Oh, there was just something funky so I thought I clean it."
"Umm. That's not a cleaning scrubby. It's a body scrubby. You just cleaned something funky with the sponge I use to clean me ."
"Oh, I thought it was for cleaning the shower. That's what I use for all the time."
"Well that is what it is for now!" and now the scrubby resides on the shower floor.
I went out and bought a new one. This one was more expensive ( $1.50) and had a little rubber suction cup on it. I showed it to Shane and told him this one is for me, not the floor. It was a preacher shade of pink, not sure how much that matters as he is a little color blind, but I thought color-coding might have positive outcome. He said fine but to keep it off the glass door where it would be too prominent and he might forget what it was supposed to be used for. Well the rubber suctiony thing does not like the tile walls and will only adhere to the glass door.
Which I explained to Shane and so far he's been able to resist the temptation to scrub the shower in the mornings. I did put an actual cleaning sponge on the shelf for him, just in case. So far its working.
Speaking of "Me time", I did schedule an outing for myself. To the dentist. I did try the hair salon first, but they were booked both attempts I made. So I was left with the dentist if I wanted some quiet time. I felt so stoked about it and actually wore jeans for the first time in I don't even know. I thought of wearing earrings but felt the pants were fancy enough and I didn't want the new dentist to think I got dressed up. Just to get my teeth cleaned. Which I did. She didn't seem to notice. Shane did, and told me I looked cute. Twice, before he left to work.
It might finally be the time to get my old wardrobe out, if its not too outdated, and join the rest of the world in doing all the things I haven't' for the past three years. Maybe I can get a new outfit and Shane can take me to the movie. And buy me a new body sponge.
Wednesday, April 29, 2015
Life Rhythms
Which at the moment are definitely on the discordant and not super rhythmic side of the page. If my life was a piece of music it would a Bartok or Shostakovich, neither of which are my favorites. I'm waiting to get to some Dvorak or Smetana. But I guess we have to get through the opening pieces first to get to the good stuff. Which always really annoyed me at concerts. I came for the Beethoven, I don't want to hear a piece by a still-wet-behind-the-ears composer who doesn't like to match any two notes with anything else and makes me feel like a badly and hastily shaken martini.
In the mean time, we are at least cobbling together our version of not-too-crazy-any-more-at-least-for-this-second. Which has been mostly due to the babies sleeping when normal people sleep. Not swing shift and graveyard workers. Which has added a lot less crazy-zombie to our waking hours.
Not that it is new news, but our kids have been ridiculous sleepers. All of them. No on has napped past 2 years of age. All of them preferred really late naps resulting in really late bedtimes. As I was also pregnant for most of their toddler years I was just glad to get any break ever and let the funky sleep cycles play out every day. Which in turn made for more of them. If there was ever a pattern interrupter, it was a stomach flu or cold which left ever more ridiculous habits in its wake. Along with a boatload of dirty laundry.
To be fair, to me, because it's my blog, growing up we had some pretty weird routines of our own, necessitated by my dad's work hours. The years he worked 1st watch, my mom would keep us all up late so we would sleep in and stay quiet so dad could sleep. After that it didn't matter when he worked. We were sticking with the first schedule. As all of our kids have tried to do as well.
Over a family vacation of miserable sleep I finally got desperate and ordered this book.
I don't care for the cry-it-out method so it seemed a safe bet. I really liked the book, especially the part where she admits if she knew it was her last baby she would totally enjoy it and let the baby nap in her arms and everything else a sleep trainer would be horrified by. I feel a little late to the party, not trying to sort thing out until Baby #6, but better late than never. I ordered several other sleep books though. Some more on the science side. I thought the information he presented was fine. All 50 times it was re packaged and represented. Maybe because it was written by a man I didn't feel like it spoke to the mom in me. So in the end most of what we employed was from Pantley's book and most nights things have gone well. Of course it helps that Fiona is over a year now. And that Cyril can get Malachi to bed. I am curious how things would have played out had I had my act together and started routines earlier. A lot better I am sure. But we are where we are because we were lazy. I mean I was lazy. (Shane would still get up early and go to work.)Hopefully there is time to remedy the rest of the family so they can learn to operate on better schedules and we can break the generational sleep dysfunction gift. Which it really is/was.
Thinking back over it gives me the heebie-jeebies. I am so grateful to not be in new baby sleep absolutely no rhythm phase of life right now. Even thinking about writing Fiona's birth story takes me too close to insanity days than I care to get right now. But I will someday. But today is not that day. Especially since Fiona got up before 6 and now is napping which will throw off her later nap and I'll have to keep it short so we can still have a decent bedtime because Shane needs to get to bed so he can get up early to ride his bike in to work. Again.
Biking in has turned into a very doable rhythm, at least in the drier, if you can call 'well, at least its not flooding' drier. Which we do. Shane gets to fit exercise into his crazy-busy days and avoid nasty car commutes. Biking only takes about as long as it might driving in at the same time so it's a win-win. Luckily he can drive to the start of the trail down the hill and then its trail all the way there with a nice shower at the end. So no biking next to cars, which I really like.
Fiona got wind of the early departure and has gotten up to farewell the troops the past two mornings. Which requires her to get up before 6am! But an 8:00 bedtime is totally worth playing for so I'll just enjoy the single-child mornings and try to get a little housework done. Which is next on my rhythms that need much more improvement list.
In the mean time, we are at least cobbling together our version of not-too-crazy-any-more-at-least-for-this-second. Which has been mostly due to the babies sleeping when normal people sleep. Not swing shift and graveyard workers. Which has added a lot less crazy-zombie to our waking hours.
Not that it is new news, but our kids have been ridiculous sleepers. All of them. No on has napped past 2 years of age. All of them preferred really late naps resulting in really late bedtimes. As I was also pregnant for most of their toddler years I was just glad to get any break ever and let the funky sleep cycles play out every day. Which in turn made for more of them. If there was ever a pattern interrupter, it was a stomach flu or cold which left ever more ridiculous habits in its wake. Along with a boatload of dirty laundry.
To be fair, to me, because it's my blog, growing up we had some pretty weird routines of our own, necessitated by my dad's work hours. The years he worked 1st watch, my mom would keep us all up late so we would sleep in and stay quiet so dad could sleep. After that it didn't matter when he worked. We were sticking with the first schedule. As all of our kids have tried to do as well.
Over a family vacation of miserable sleep I finally got desperate and ordered this book.
I don't care for the cry-it-out method so it seemed a safe bet. I really liked the book, especially the part where she admits if she knew it was her last baby she would totally enjoy it and let the baby nap in her arms and everything else a sleep trainer would be horrified by. I feel a little late to the party, not trying to sort thing out until Baby #6, but better late than never. I ordered several other sleep books though. Some more on the science side. I thought the information he presented was fine. All 50 times it was re packaged and represented. Maybe because it was written by a man I didn't feel like it spoke to the mom in me. So in the end most of what we employed was from Pantley's book and most nights things have gone well. Of course it helps that Fiona is over a year now. And that Cyril can get Malachi to bed. I am curious how things would have played out had I had my act together and started routines earlier. A lot better I am sure. But we are where we are because we were lazy. I mean I was lazy. (Shane would still get up early and go to work.)Hopefully there is time to remedy the rest of the family so they can learn to operate on better schedules and we can break the generational sleep dysfunction gift. Which it really is/was.
Thinking back over it gives me the heebie-jeebies. I am so grateful to not be in new baby sleep absolutely no rhythm phase of life right now. Even thinking about writing Fiona's birth story takes me too close to insanity days than I care to get right now. But I will someday. But today is not that day. Especially since Fiona got up before 6 and now is napping which will throw off her later nap and I'll have to keep it short so we can still have a decent bedtime because Shane needs to get to bed so he can get up early to ride his bike in to work. Again.
Biking in has turned into a very doable rhythm, at least in the drier, if you can call 'well, at least its not flooding' drier. Which we do. Shane gets to fit exercise into his crazy-busy days and avoid nasty car commutes. Biking only takes about as long as it might driving in at the same time so it's a win-win. Luckily he can drive to the start of the trail down the hill and then its trail all the way there with a nice shower at the end. So no biking next to cars, which I really like.
Fiona got wind of the early departure and has gotten up to farewell the troops the past two mornings. Which requires her to get up before 6am! But an 8:00 bedtime is totally worth playing for so I'll just enjoy the single-child mornings and try to get a little housework done. Which is next on my rhythms that need much more improvement list.
"See, I'm really helpful to have around at ungodly hours."
Actually, this wasn't that early. It was the weekend and she was helping Shane make me a latte. But it was too cute to not include. Hope your sleep is normal and restful. Like this.
Wednesday, April 22, 2015
A Little Bit of Our Normal and Detinitely Not Normal
Not that I know what normal is. At All. But we can pretend can't we.
Last week, I somehow found myself home alone. With the just the babies. I can't remember how I let that happen. I feel like such a spoiled lightweight. I mean when the big kids were little, I did it everyday. Meaning I packed them up and we went to my mother-in-laws. Every day. I'd call Shane and tell him where he should come if he wanted dinner. I remember at one point he said to me,
"You do know we have our own house. Where we live. Right?"
I knew we did. But I also knew there was no one there to talk to whose diaper I didn't have to change. Or who could make me a cup of coffee and a scone. So down the road to Grandma and Grandpa's we would go. And that was how I survived the early years of being the sole toilet-trained person at home.
Maybe not the most impressive parenting strategy, but the early years are just a survival game. And I think it was a great strategy everyone should be able to have. I would ask Audrey what she wanted to be when she grew up and she was answer , " A Grandma!" It was a good time for everyone.
But back to my Lone Survivor Day. Actually it was only a few hours, but it felt like I'd been sliding down rocky cliffs and suffering constant ambushes without backup for a week. It started with Shane taking Cyril to an appointment. Which Malachi was very upset about . Having none of it, he broke through the gate Shane installed to keep him from escaping and headed right after them. Cyril noticed and jumped out of the truck to walk him back up the driveway where I was just headed with crying Fi, who also does not like to be left out of any social excursion beyond the confines of our house. I don't know who has been telling her tales of the great big beyond the front door, but she is into it and will take any opportunity of attempting to get there. Fortunately she has not been successful in breaching the gate though I'm sure its just a matter of time before Muffin gives her lessons.
I wrestled them back behind the defensive zone, if that works. Shane did not marry me for my love, or knowledge of anything sporty. Though, him being as big a fan as I am, I think I can say whatever I want. Then, being the clever wife that he may, or may not, have married me for, I picked up a scarf and tied the gate shut. Malachi was again upset at being thwarted and quickly went on the offensive by suggesting we foam sword fight. Somehow he had left his sword on the back porch so I would of course have to unlock the back door for him to get it. I couldn't carry both kids and either kid would bolt once the door was opened so I, naïvely, opened the door and told him to go get it, while I held wiggly Fi back. And of course he went out the door with no intention of ever coming back. Peacefully. Or any other way. Eventually I bribed him with some promise of something to come back in. And quickly locked the door.
I searched my mental data base of things to do when the only thing both kids are capable of doing together is destroying the house and came up with this:
It worked for about 30 min, during which I had to remember the protocols for de-tubbing and dressing two kids both of which have the singular life goal of discovering just how much a toilet is capable of sucking down in one flush. Bing turned up no results to said query so I winged it by letting them air dry a bit and then offering another bribe to let me get close enough to throw a diaper and some bit of clothing on them both.
And then I thanked the parenting gods when I heard the doorbell, heralding the return of the three older kids from their lessons. Again, thanks to Grandma Trudy for ferrying them.
If you can use a laugh, Shane took Cyprian shoe shopping but nothing in the store was his size so they ordered some through the store. Two days later, this arrived:
At first I thought these little ones were like a hood ornament for his tennis shoes box. But realized they had sent a little kids 4, instead of a big kids 4. Cyprian was not so amused.
Fiona, on the other hand, was thoroughly amused when Shane and I took her to dinner last night for a final Harrah!
Is that water really for ME?
Ok, Fiona. I think you've had enough.
Everyone's pants were wet by the end of dinner. We did discover in addition to the feel of cold water dribbling down her chin, she also likes beets, limabeans, mahi mahi, and raspberry sorbet. Not so much panna cotta. Hey, more for mom. She also does not like nursing quietly and discreetly while not exposing mom to a room full of strangers. Not that knowing them would make it any less annoying or difficult to attempt while eating. That is where the Last Harrah comes in. Until she can use a steak knife. Which will probably also be soon, courtesy of Malachi.
Sunday, April 19, 2015
Watch Your Back!
Last night we had a bit of a scare. Kateri and Cyprian came running into the room shouting,
"I think there's something wrong with Cyprian's nose!"
Cyprian had his hands covering his nose and half his face. I didn't see any blood, so at first was not to concerned. Cyprian asked in a muffled voice,
"Does this mean there's something wrong with my nose? Is it supposed to sound like this?"
He pushed with his hands, moving his nose side to side. As he did there was a disgusting stomach turning crunching/grinding sound.
Before we could even try assessing his injury they both burst out laughing and showed us the uncooked spaghetti noodles they were crunching with their teeth.
Apparently they had spent some time researching practical jokes and were excited to 'share' the fun.
Later, it was not so fun, when Pippin 'splashed' an empty cup on Audrey, who was heroically eating her breakfast while holding Fi, to whom practical jokes are a way of life, and taking advantage of Audrey's temporary distraction, reached out, grabbed the bowl of cereal, and deposited it and its contents on the floor.
So then we had a little talk about what kind, and when jokes are funny. And when they are not. And unintended consequences and who gets to clean up the mess. As far as practical jokes go, so far they are pretty harmless. Growing up with 5 brothers, and 3 sisters, we had our fair share of practical jokes. It seemed sometimes like we were a frat house and hazing was just a way of life. It wasn't surprising when you went to get in your freshly run bath only to find out someone had put dishsoap in the running water and you now had a huge bubble bath that made you smell like freshly scrubbed dishes. I think I used Dawn. And I'm pretty sure my mom was not pleased. Nor was my brother, the intending bather.
But that was not as bad as the times when someone would catch you while you were at your most vulnerable, after you had already started your bathing routine. We only had one bathroom so there was no monopolizing it just so You could relax in your shower. That's what curtains were for.
There you were, enjoying your nice shower. The sounds of the water drowning out the noise of the rest of the household, and unbeknownst to you, the sound of someone opening the bathroom door. You were only alerted to the presence of an intruder when the Sneaker, who had thoughtfully filled a large pitcher with ice water, dumped the contents over the shower rod and all down your exposed and shivering body, turning your warm shower into an ice bath. Then before leaving, Sneaker would flush the toilet to take up all the cold water and run. Leaving you with streams of scalding water blasting out the shower head.
Our pranks came in waves, some favorites lasting longer than others. I think the longest reigning and most popular prank was creating short circuits by secretly wiring appliance plugs. The shower tricks we kept to the kid crowd, but this was one the whole family, or even an uninitiated guest, could participate in. We'd get some thin copper wire and wrap it around the prongs of an electrical cord, creating a short circuit when someone was not on their guard and plugged in whatever appliance they needed without first checking for booby traps. It was great because you could set a trap and no one would know by whom or when it would be set off. Even if you were still in bed, you could enjoy the loud pop, the surprised #$%^*!! And say to yourself,
"Ooh. Somebody's about to grind coffee."
And on a great morning you'd get to hear a second *zap* meaning they assumed there was only one rigged plug. And they were about to turn on the coffee maker.
All the outlet covers sported residual black smudges. Evidence of someone's carelessness. And sometimes the victim's fingers, if we were really lucky.
There really wasn't much damage done, mostly just to peoples' nerves. Nowadays, with all the safety features, such a trick would flip a breaker you'd have to go out to the garage to reset it and it would be a pain, so I don't recommend it. Just last month, Cyril decided to connect a bunch of small magnets he gathered from a broken toy, and then casually go around testing how strong it was. Oh look, it can pick up the entire metal napkin basket! That's pretty strong. He tested a few appliances for magnetic materials. Oh look, the screws on the switch plate. Maybe it will stick!
Immediately the whole kitchen went dark.
I sent him out to the fuse box. No matter how many times we turned it all the way off and back the breaker would not stay on. So I hung up some Christmas lights and we waited for Shane to investigate when he got home. It was a three switch plate so he replaced the one Cyril had stuck the magnet to. No dice. In the end he had to replace all three. So Shane is not a huge fan of that trick, though he did like the twinkle lights, which are still up and add a festive feel to the whole room.
As science experiments have been at a minimum this year I'm going to put the whole experience in the educational department. And hope that is it for the year.
"I think there's something wrong with Cyprian's nose!"
Cyprian had his hands covering his nose and half his face. I didn't see any blood, so at first was not to concerned. Cyprian asked in a muffled voice,
"Does this mean there's something wrong with my nose? Is it supposed to sound like this?"
He pushed with his hands, moving his nose side to side. As he did there was a disgusting stomach turning crunching/grinding sound.
Before we could even try assessing his injury they both burst out laughing and showed us the uncooked spaghetti noodles they were crunching with their teeth.
Apparently they had spent some time researching practical jokes and were excited to 'share' the fun.
Later, it was not so fun, when Pippin 'splashed' an empty cup on Audrey, who was heroically eating her breakfast while holding Fi, to whom practical jokes are a way of life, and taking advantage of Audrey's temporary distraction, reached out, grabbed the bowl of cereal, and deposited it and its contents on the floor.
So then we had a little talk about what kind, and when jokes are funny. And when they are not. And unintended consequences and who gets to clean up the mess. As far as practical jokes go, so far they are pretty harmless. Growing up with 5 brothers, and 3 sisters, we had our fair share of practical jokes. It seemed sometimes like we were a frat house and hazing was just a way of life. It wasn't surprising when you went to get in your freshly run bath only to find out someone had put dishsoap in the running water and you now had a huge bubble bath that made you smell like freshly scrubbed dishes. I think I used Dawn. And I'm pretty sure my mom was not pleased. Nor was my brother, the intending bather.
But that was not as bad as the times when someone would catch you while you were at your most vulnerable, after you had already started your bathing routine. We only had one bathroom so there was no monopolizing it just so You could relax in your shower. That's what curtains were for.
There you were, enjoying your nice shower. The sounds of the water drowning out the noise of the rest of the household, and unbeknownst to you, the sound of someone opening the bathroom door. You were only alerted to the presence of an intruder when the Sneaker, who had thoughtfully filled a large pitcher with ice water, dumped the contents over the shower rod and all down your exposed and shivering body, turning your warm shower into an ice bath. Then before leaving, Sneaker would flush the toilet to take up all the cold water and run. Leaving you with streams of scalding water blasting out the shower head.
Our pranks came in waves, some favorites lasting longer than others. I think the longest reigning and most popular prank was creating short circuits by secretly wiring appliance plugs. The shower tricks we kept to the kid crowd, but this was one the whole family, or even an uninitiated guest, could participate in. We'd get some thin copper wire and wrap it around the prongs of an electrical cord, creating a short circuit when someone was not on their guard and plugged in whatever appliance they needed without first checking for booby traps. It was great because you could set a trap and no one would know by whom or when it would be set off. Even if you were still in bed, you could enjoy the loud pop, the surprised #$%^*!! And say to yourself,
"Ooh. Somebody's about to grind coffee."
And on a great morning you'd get to hear a second *zap* meaning they assumed there was only one rigged plug. And they were about to turn on the coffee maker.
All the outlet covers sported residual black smudges. Evidence of someone's carelessness. And sometimes the victim's fingers, if we were really lucky.
There really wasn't much damage done, mostly just to peoples' nerves. Nowadays, with all the safety features, such a trick would flip a breaker you'd have to go out to the garage to reset it and it would be a pain, so I don't recommend it. Just last month, Cyril decided to connect a bunch of small magnets he gathered from a broken toy, and then casually go around testing how strong it was. Oh look, it can pick up the entire metal napkin basket! That's pretty strong. He tested a few appliances for magnetic materials. Oh look, the screws on the switch plate. Maybe it will stick!
Immediately the whole kitchen went dark.
I sent him out to the fuse box. No matter how many times we turned it all the way off and back the breaker would not stay on. So I hung up some Christmas lights and we waited for Shane to investigate when he got home. It was a three switch plate so he replaced the one Cyril had stuck the magnet to. No dice. In the end he had to replace all three. So Shane is not a huge fan of that trick, though he did like the twinkle lights, which are still up and add a festive feel to the whole room.
As science experiments have been at a minimum this year I'm going to put the whole experience in the educational department. And hope that is it for the year.
Monday, March 23, 2015
The Quarantine Chronicles
She was thoroughly delighted (as were we all) with the caramel cream cake provided by Grandma Trudy. Who also provided the meal.
As lent had just begun two days previously, a Fi(st) day was a welcome reprieve from our onerous Lenten observations. I am still working on trying to get back up to my prepregnancy weight and was directed to not give up anything which contained calories. Or fat. Or pretty much anything. Fi is a major calorie consumer (those thighs don't some easily) so until she stops nursing I'm pretty resigned to wearing Audrey's hand-me-downs and eating like a fatted calf. And then eating the fatted calf for dessert. It's rough having such a freaky metabolism. Know what it's like being cold and hungry all the time? Take me out to lunch and I'll tell you all about it.
We all enjoyed the nice party. And then a week after the festivities, a nasty cold descended on the house and we've been shut-ins since. It hit some of us harder than others. Thankfully the little ones had a light version and I was mostly unscathed and got to play Florence Nightingale for the duration of the plague. I didn't have to do any amputations, which was a relief, mostly just keep up the feeding and medicating of the invalids. Which I was able to do because our supplier (aka Grandma Trudy) left a huge cache of goods on our porch. Shane and the four big kids were hugely scathed and missed weeks of work and schooling.
This week I'm hoping we can transition from the land of the not-dead-yet to the living. Or, in my case, the gimpy-but-still-not-dead-yet crowd. Which seems to be the new normal. At least for me.
A few weeks ago, in addition to the plague fairies, I got a visit from the Frankenstein fairy. Which left me with rubberbands in varying lengths and elasticities wrapped around my legs. Which were turned into ice, then stone, then wood. At least that is how they feel to me. Shane assures me it doesn't look that way. Though I have not tried running or anything that requires quick foot work. Because, let's not add injury to insult.
I emailed my neurologist, which is a new feature the clinic has set up, which is awesome but also surprising that it is 2015 and this is new feature. She offered a course of steroids, and for the first time in 24 years, I said I'd consider it. Which I did for a couple days and then decided no. In addition to not wanting to have interference with breastfeeding- I'm still a little scarred from the cold turkey weaning with Malachi-I didn't want the other side effects. Insomnia- oh because our sleep routines after two years of crazy have finally become bearable. Irritability, aggression, oh, and the munchies. I don't have time for any of that. So in the end I passed. It's been three weeks and typically a relapse starts calming down after 6 weeks so we'll just figure it out as we go.
I'm curious to talk more to my doctor in May. Last visit I didn't have much to report. When I brought up some of my latest internet researches, she suggested I focus my investigations more in the line of the anti-brain-atrophy therapies being worked on, as opposed to the anti-inflammatory drugs. Which seemed a covert way of saying I've transitioned to the second part of the party. Progressive MS. She explained it as the difference between a fire that periodically lights up versus a hot bed of coals that just sits and smolders. So in addition to my swagger, I've got smolder. Gary Cooper, you've got competition.
If the transition proves true it would also mean a new field(albeit smaller field) of therapies would be options and other therapies would be ixnayed. I don't mind passing on any more of the needles, for sure. I am still intrigued by the HSCT I mentioned in a previous post. There are trials going on, even in Seattle, but they want fresh meat. Not aged and smoldering for 24 years. Mostly because they found it most beneficial when done in the still relapsing stage. Which, because of the most recent gimpiness, I might still be in. So there's a silver lining. Or maybe Shane will take me to Germany and get it done there. He totally would if I wanted to. But for now we'll just wait and see how it all goes down. And hope no one gets their leg broke in the process.
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