So far this year, although cardiology discharged us, we've had the saga of Acorn randomly passing out (apparently it's not epilepsy, the reigning theory is vaso-vagal weirdness), Leaf's hives from hell that lasted a month the first time, and then came back 3 or 4 more times for a few days at a time, Hand Foot and Mouth disease (resulting in a febrile seizure for Leaf), and Leaf falling down the stairs and cutting open her cheek bone.
That last one is killing me - it's not healing nicely, even after 6 hours in the ER to get it stitched up (they wanted to be sure her skull and brain were intact, and there were 3 pediatric trauma calls after we got there, and at least 1 just 20 minutes before us). In fact, the cut is still wide and gappy a week later, after it took us 2 days to get the scabs melted enough to get the stitches out. The pediatrician suggested taking her back to the ER so they could drug her (again) to get the sutures out, but we were not real keen on yet another visit.
As if 2 ER visits in one weekend wasn't enough trauma for all of us. That's actually a new record.....shortest time between ER visits. Even RSV with 2 complex kids couldn't manage that.
People keep saying it's not a big deal, but the truth is, it's a huge deal. Of all her scars, this is one she can't easily cover. This is one that will be in every photograph for the foreseeable future. "If it bothers her" seems like a senseless thing to say, because of all the scars, this is the one people are going to ask about.
People comment on how beautiful she is. And I can see that coming to a screeching halt when she turns and they see this gash. Being cute has gotten my kids a lot further than they would otherwise get, because people respond to cute, and want to be near and help cute.
And even if we did take her to a plastic surgeon.....that's a whole nother round of trauma. More doctors, more surgery, more hospitals....
This never-ending cycle is exhausting.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Monday, August 15, 2016
Thursday, May 8, 2014
Growing Like Weeds
A funny thing happened recently.
I realized that Acorn can now hold my hand.
Which is not to say that he didn't hold it before...but that before, he held my hand like a toddler, holding a couple fingers, his hand (and/or wrist) completely envoloped in mine. And now his hand is big enough to actually hold my hand like everyone else holds hands.
This growth thing is subtle. It's a pair of shoes that no longer fit. Pants that were too long that now aren't. Getting to be too hard to carry up the stairs when he's asleep. Words (actual words, and attempted words) coming from his mouth. Writing his name, and walking with me in some cases rather than needing to be shepherded along. Swinging on a big kid swing (and needing 2 people to get him out of a bucket swing....not doing that again!)
Leaf, too, is growing. Tall enough to pull things off the counters. Quick to get on and off furniture. Walking for blocks and blocks - a half mile or more - rather than it being a challenge for her to just get around our block. Riding a tricycle, and cracking jokes (body and potty are two very different signs, but the words sound the same....and making you say one so she can sign the other is hilarious).
Time speeds by, and sometimes I think there are not enough photographs in the world to capture everything I want to capture of them. Photos might capture the smiles, and a video might capture their giggles, but neither can capture the feeling of the world's best hugs, and neither can capture the comparison in my head of tiny preemie hands that couldn't hold the end of my finger and big kid hands that hold my hands back.
Wednesday, July 3, 2013
Pagan Festivals and Kids
I'm just going to put it out there that if things were not so complicated this year, and if I'd known about it sooner, I'd've be pushing for us to go here:
http://www.ratatask.org/CampIdunna/index.html
This is how we used to run our big SpiralScouts camping trips when we were leading a group - long before we had kids, long before ventilators and pulse ox machines and tracheostomies.
Lots of activities - water play, crafts, hiking, outdoor skills. Lots of good food, and shared meals. Story telling, enjoying nature, and a community of families who came together for the weekend.
Don't get me wrong, these events were exhausting. We frequently had 50 or more campers to plan for across anywhere from 2 to 5 SpiralScouts Circles and Hearths. But we also split the work. We divided up who was responsible for which meal, each smaller group took on an activity for the whole group, and there were plenty of adults to work with smaller children on things at their level while the bigger ones worked on more advanced skills with other adults.
The kids were the focus, but the adults had fun all the same. Child care wasn't an issue, because the whole event was child oriented. Even for families with special needs, things could be situated to work - we took dietary restrictions into account when planning meals and snacks, we could be flexible as needed to work with a child's specific needs.
Last year it was clear to us that Acorn wasn't going to be successful right now in our local SpiralScouts group (or any other scouting type organization, actually). The debate of whether to do our own Hearth or whether to just wait and see if he was more ready in a year or two was won by exhaustion and apathy - we've done nothing this year, and have not decided about next year.
But sooner or later, I think we'll end up doing something. I just don't know what yet.
http://www.ratatask.org/CampIdunna/index.html
This is how we used to run our big SpiralScouts camping trips when we were leading a group - long before we had kids, long before ventilators and pulse ox machines and tracheostomies.
Lots of activities - water play, crafts, hiking, outdoor skills. Lots of good food, and shared meals. Story telling, enjoying nature, and a community of families who came together for the weekend.
Don't get me wrong, these events were exhausting. We frequently had 50 or more campers to plan for across anywhere from 2 to 5 SpiralScouts Circles and Hearths. But we also split the work. We divided up who was responsible for which meal, each smaller group took on an activity for the whole group, and there were plenty of adults to work with smaller children on things at their level while the bigger ones worked on more advanced skills with other adults.
The kids were the focus, but the adults had fun all the same. Child care wasn't an issue, because the whole event was child oriented. Even for families with special needs, things could be situated to work - we took dietary restrictions into account when planning meals and snacks, we could be flexible as needed to work with a child's specific needs.
Last year it was clear to us that Acorn wasn't going to be successful right now in our local SpiralScouts group (or any other scouting type organization, actually). The debate of whether to do our own Hearth or whether to just wait and see if he was more ready in a year or two was won by exhaustion and apathy - we've done nothing this year, and have not decided about next year.
But sooner or later, I think we'll end up doing something. I just don't know what yet.
Monday, March 4, 2013
Food and the Medically Complex Child
Many of us with complicated kids spend an awful lot of time trying to figure out how to feed them. For a while I thought I was going to do a separate blog just about food and a family with complicated kids. But it occurred to me that that was a silly idea all around - I might as well put it all right here.
So...I have 5 posts from that little attempt to re-post, and will then be trying to post at least a couple posts a month about feeding this family amidst all our issues, and I'll also be trying to post a little about kitchen witchery while I'm at it.
Repost #1 is below
*****
As I've mentioned, my kids have food issues.
My daughter, Leaf, who is a year and a half old, largely eats pureed foods - crunchy things have taken months of therapy, and we haven't even begun things that don't dissolve when you drool on them enough. She also has a feeding tube, and it's still a significant source of calories most days.
My son, Acorn, (age 4 1/2) used to have a feeding tube, and is not fond of pureed foods. He eats some fruits and veggies, flat breads, mac and cheese (but only Kraft and similar types), and a handful of other things. Apparently he eats better at daycare than at home, but we have to plan for what he will eat with every meal we make. We offer some of what we're eating most nights, but he's far more likely to ignore it than to eat it.
Needless to say, finding something everyone will eat is nearly impossible.
Because of my kids' medical issues, they are eligible for medicaid....which makes them eligible for WIC until age 5. WIC only offers baby foods up to a year old, because after that they should be eating table food. Needless to say, neither of my kids met that mark. WIC was a huge help last year when I took a leave of absence from work to handle some of their medical issues, and learning to cook around the offerings of WIC has been an interesting challenge. Plus, WIC pays for the outrageously expensive prescription formulas that we use to supplement both children's diets, and without that alone, we'd go broke.
We stocked up on jars of baby food when we could get them through WIC, but we've now run through the stock, so we need to blend our own, or buy more (and since we've had an abundance of fresh fruits and veggies, blending our own makes far more sense.
Additionally, I need to thank Vitamix - they have a wonderful program that gives a discount to families doing a blenderized diet. For those not familiar with the term, it means blending table food to feed via a feeding tube. We got a substantial discount off the retail price of a blender - and then about the time we got started blending things for her tube, little miss decided eating was far more entertaining. So we haven't blenderized as much as expected for her tube feedings, but we are blending things for her to eat by mouth....and this puppy makes the smoothest baby food ever, far nicer than my hand crank food mill.
Ours is one of these:
I'm trying, every few days, to make something different. This way she gets a variety of foods, and if I make 4-6 servings of 3 things a week, I'll stay ahead of her (and if not, I'll have a crazy cooking fest on a weekend). Plus she eats yogurt (mostly home made, from whole milk) and avocado, which are high in calories and make a good base for the rest of her meals.
This past week, I made a sweet potato, pears, and squash. Before that, I took home made applesauce, cooked a few blueberries, added it all together, and threw it in the blender.
My next challenge: meat. Because protein is important for growing children, and she's not going to get enough from other sources at the rate we're going.
....which makes me wonder whether my son would eat beans if they were cooked with some spices. Not my thing, but he's weird in his own ways.
*****
Disclaimer: Affiliate link, if you buy using it, I make some cash.
So...I have 5 posts from that little attempt to re-post, and will then be trying to post at least a couple posts a month about feeding this family amidst all our issues, and I'll also be trying to post a little about kitchen witchery while I'm at it.
Repost #1 is below
*****
As I've mentioned, my kids have food issues.
My daughter, Leaf, who is a year and a half old, largely eats pureed foods - crunchy things have taken months of therapy, and we haven't even begun things that don't dissolve when you drool on them enough. She also has a feeding tube, and it's still a significant source of calories most days.
My son, Acorn, (age 4 1/2) used to have a feeding tube, and is not fond of pureed foods. He eats some fruits and veggies, flat breads, mac and cheese (but only Kraft and similar types), and a handful of other things. Apparently he eats better at daycare than at home, but we have to plan for what he will eat with every meal we make. We offer some of what we're eating most nights, but he's far more likely to ignore it than to eat it.
Needless to say, finding something everyone will eat is nearly impossible.
Because of my kids' medical issues, they are eligible for medicaid....which makes them eligible for WIC until age 5. WIC only offers baby foods up to a year old, because after that they should be eating table food. Needless to say, neither of my kids met that mark. WIC was a huge help last year when I took a leave of absence from work to handle some of their medical issues, and learning to cook around the offerings of WIC has been an interesting challenge. Plus, WIC pays for the outrageously expensive prescription formulas that we use to supplement both children's diets, and without that alone, we'd go broke.
We stocked up on jars of baby food when we could get them through WIC, but we've now run through the stock, so we need to blend our own, or buy more (and since we've had an abundance of fresh fruits and veggies, blending our own makes far more sense.
Additionally, I need to thank Vitamix - they have a wonderful program that gives a discount to families doing a blenderized diet. For those not familiar with the term, it means blending table food to feed via a feeding tube. We got a substantial discount off the retail price of a blender - and then about the time we got started blending things for her tube, little miss decided eating was far more entertaining. So we haven't blenderized as much as expected for her tube feedings, but we are blending things for her to eat by mouth....and this puppy makes the smoothest baby food ever, far nicer than my hand crank food mill.
Ours is one of these:
I'm trying, every few days, to make something different. This way she gets a variety of foods, and if I make 4-6 servings of 3 things a week, I'll stay ahead of her (and if not, I'll have a crazy cooking fest on a weekend). Plus she eats yogurt (mostly home made, from whole milk) and avocado, which are high in calories and make a good base for the rest of her meals.
This past week, I made a sweet potato, pears, and squash. Before that, I took home made applesauce, cooked a few blueberries, added it all together, and threw it in the blender.
My next challenge: meat. Because protein is important for growing children, and she's not going to get enough from other sources at the rate we're going.
....which makes me wonder whether my son would eat beans if they were cooked with some spices. Not my thing, but he's weird in his own ways.
*****
Disclaimer: Affiliate link, if you buy using it, I make some cash.
Friday, March 1, 2013
Babies Don't Keep
Mother, O' Mother, come shake out your cloth,
Empty the dustpan, poison the moth.
Hang out the washing, make up the bed,
Sew on a button and butter the bread.
Where is the mother whose house is so shocking?
She's up in the nursery, blissfully rocking.
Oh, I've grown as shiftless as Little Boy Blue,
Lullaby, rockaby, lullaby loo.
Dishes are waiting and bills are past due,
Pat-a-cake, darling, and peek - peekaboo.
The shopping's not done and there's nothing for stew,
And out in the yard there's a hullabaloo.
But I'm playing Kanga and this is my Roo.
Look! Aren't his eyes the most wonderful hue?
Lullaby, rockaby, lullaby loo.
The cleaning and scrubbing can wait till tomorrow,
But children grow up, as I've learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!
I'm rocking my baby and babies don't keep.
~ Ruth Hulbert Hamilton
I find myself remembering this poem more and more often these days.
We're discussing Acorn going to kindergarten this fall (though his IEP will be later this month, and it's not a done deal until then). He's more than half my height (he's 3 feet 6 inches tall - pretty good for a kiddo who started out only a foot long). He's swimming, and very serious about it - and he looks so much older these days, with the thin but strong body of a little boy who plays hard, instead of the somewhat rounder look of a toddler:
And Leaf took her first step (just the one though) this week - we're hoping her new SMOs will help with that, but they're dwarfed by the velcro that holds them in place:
Even so, she's getting big too. In a year we'll be talking about transitioning from early intervention into special ed preschool. With any luck, we'll be trach free or nearly so by then, and probably talking about swimming lessons or dance class or something like that for her too.
Definitely not babies anymore...which always catches me by surprise.
Tuesday, November 29, 2011
Little Bits and Bobs
It's been busy here. I'm still catching up on laundry from Acorn's week in the hospital and dishes from Thanksgiving.
Leaf is still in the PICU and still vented. We're hoping that we're finally making progress in getting her off the vent, but it's really all up to her.
Acorn is home from the hospital as well, and back to his normal self, other than the return of nightmares. It's been a long time since that was a multiple times a night every night thing, and I don't really know how to help him. He's come up with a handful of new words this week though, and has been more actively signing things since his hospital stay (though sometimes he's just signing "yes" when he means "I want that thing over there"
I've been trying to spend my evenings in the PICU writing. Some days it works better than others - but there are projects in the works and things that need to get done. At the very least, it's time to wind down from being "on" all day with Acorn. We're both adjusting, and it's a process...we're not comfortable with it yet, but we'll get there.
I have nothing really deep to say right now - just too darn tired after a night of being up a fair portion of the night with Acorn when he's having nightmares. But I do have a post already written for the 21 days of Yule over at http://thepaganhousehold.com, so be on the look out for that in December.
Leaf is still in the PICU and still vented. We're hoping that we're finally making progress in getting her off the vent, but it's really all up to her.
Acorn is home from the hospital as well, and back to his normal self, other than the return of nightmares. It's been a long time since that was a multiple times a night every night thing, and I don't really know how to help him. He's come up with a handful of new words this week though, and has been more actively signing things since his hospital stay (though sometimes he's just signing "yes" when he means "I want that thing over there"
I've been trying to spend my evenings in the PICU writing. Some days it works better than others - but there are projects in the works and things that need to get done. At the very least, it's time to wind down from being "on" all day with Acorn. We're both adjusting, and it's a process...we're not comfortable with it yet, but we'll get there.
I have nothing really deep to say right now - just too darn tired after a night of being up a fair portion of the night with Acorn when he's having nightmares. But I do have a post already written for the 21 days of Yule over at http://thepaganhousehold.com, so be on the look out for that in December.
Monday, November 21, 2011
Worlds Apart
I'm sitting here in Leaf's room tonight, listening to the radio and having a bit of time to wind down after a particularly whiney day with Acorn (and no nap, so no break in the whines all day). It's calm here - quiet; the soft click-huff of the vent makes a rhythmic counterpoint to the easy listening station playing over the hospital's TV. The furniture is at least as comfortable as Starbucks (which is to say, not very, but I am starting to think that the rocking chair might work better if I use the chair I'm sitting in as an ottoman).
Most people's reaction to Leaf's illness is shock and horror. They assume we must be falling apart, sobbing in the corner or something. Some of them, hearing the word ventilator, assume this is a death watch.
Others are confused by our child care arrangements - namely, they are horrified that my husband is at work every day, and that Acorn and I are mostly going about our normal routine (or what there is of it - we've had less than a week at home to find our rhythm too, and it's just not there yet). But really, there's nothing to be done here, and no one that Acorn is comfortable staying with, and while taking a day or two off for an acute situation is reasonable, there's no company in the world that gives enough days to sit here for a week or two (we'll be at two weeks Thursday), or a month or more.
It's hard to get across to people that we really *are* at a point where this is just a normal day. Ventilators aren't scary - they are wonderful bits of modern technology that keep my kids alive. We had one at home until just recently, even. I have a resuscitation bag and I know how to use it. I know what all of the meds hanging on Leaf's IV pole do; I have given every breathing treatment they're giving and I know what they do. I understand the basics of the cardiology report, because we've read dozens of them before and seen symptoms and results first hand on a daily basis for years.
Some people think hospital stays are the worst thing ever. We've spent more than a third of our last 3 1/2 years with a child in the NICU - 15 months total. We've got another almost 2 months of hospital stays total for our children, and almost 6 weeks for me. The hospital (this hospital) is literally our second home - we spend more time here than most people spend at their cabins up north (or their vacation homes, for those who aren't here in Michigan).
Some people seem to think that I must need someone to talk to. No offense, but I have people - I have a therapist whom I'm paying a lot of money to...and she thinks I'm just fine. I have other special needs parents who understand, who've been here, who know.....who I can give the whole story to without stopping to translate medical-speak into regular-people terms.
I dunno. Some days I think we're just so far from other parents - on a different planet maybe - that having even a regular conversation is hard.
Most people's reaction to Leaf's illness is shock and horror. They assume we must be falling apart, sobbing in the corner or something. Some of them, hearing the word ventilator, assume this is a death watch.
Others are confused by our child care arrangements - namely, they are horrified that my husband is at work every day, and that Acorn and I are mostly going about our normal routine (or what there is of it - we've had less than a week at home to find our rhythm too, and it's just not there yet). But really, there's nothing to be done here, and no one that Acorn is comfortable staying with, and while taking a day or two off for an acute situation is reasonable, there's no company in the world that gives enough days to sit here for a week or two (we'll be at two weeks Thursday), or a month or more.
It's hard to get across to people that we really *are* at a point where this is just a normal day. Ventilators aren't scary - they are wonderful bits of modern technology that keep my kids alive. We had one at home until just recently, even. I have a resuscitation bag and I know how to use it. I know what all of the meds hanging on Leaf's IV pole do; I have given every breathing treatment they're giving and I know what they do. I understand the basics of the cardiology report, because we've read dozens of them before and seen symptoms and results first hand on a daily basis for years.
Some people think hospital stays are the worst thing ever. We've spent more than a third of our last 3 1/2 years with a child in the NICU - 15 months total. We've got another almost 2 months of hospital stays total for our children, and almost 6 weeks for me. The hospital (this hospital) is literally our second home - we spend more time here than most people spend at their cabins up north (or their vacation homes, for those who aren't here in Michigan).
Some people seem to think that I must need someone to talk to. No offense, but I have people - I have a therapist whom I'm paying a lot of money to...and she thinks I'm just fine. I have other special needs parents who understand, who've been here, who know.....who I can give the whole story to without stopping to translate medical-speak into regular-people terms.
I dunno. Some days I think we're just so far from other parents - on a different planet maybe - that having even a regular conversation is hard.
Tuesday, October 25, 2011
The Journey of a Thousand Miles
Lao-Tzu said that the journey of a thousand miles begins with a single step. We're embarking on a pretty monumental journey here at Our Little Acorn, and I invite you too follow along.
I am taking a 6 month sabbatical leave from work (unpaid), to stay home and take care of Acorn and Leaf. I have less than two full weeks of work left right now. Even as I write it, it sounds surreal. There's so much priviledge tied up in that statement that it scares me - I can afford to walk away from my job, for Pete's sake!
Leaf is getting a feeding tube so she can come home. She eats, but wears out before she finishes any given feeding. She breastfeeds better than she bottle feeds (yay mama milk!) and so we'll be working on that a lot. She's still on oxygen too - more than they'd like, but after Acorn, we're all sure we'll be just fine.
Acorn is leaving daycare. We can't risk the germs this winter. It feels awful to pull him now that he's finally getting the hang of it, but there's nothing to be done for it. We'll be out to some carefully screened low-germ playdates each week, and we'll be doing "homeschool" preschool type things at home too. He's recently discovered coloring, so I'm hoping that will make for some fun afternoons with crayons and markers and paint.
Needless to say, there are some dramatic lifestyle changes involved too. We're losing more than half of our income, and will be paying out of pocket for health insurance (and we can't go without - the kids have too many bills, and won't qualify for any of the low-cost plans; Leaf loses medicaid in May and Acorn in July). We'll have to budget much much better. We'll be eating out less and spending our pennies carefully, trying not to dip into savings during this time. We'll be debt free other than our house, thanks to an AFLAC policy that pays for each day in the hospital....and between Leaf and I, we've had a lot of those days this year. We have 2 cars, one new and the other nearly new, that are in good working condition. We're starting out with a well stocked pantry (if I make it to costco next weekend). My kids get WIC because they're on medicaid.
And, if things work out that way, I can theoretically return to work this spring without issue (technically, they don't have to hold my job, but since I'm covering 2 people's worth of work, and have been for over a year because they can't fill the other spot, the likelihood of not getting *this* job back, much less any job here at the company, is miniscule).
We're amazingly blessed to have this all work out. When we first started talking about it, I asked my Gods to help pave the way - to make it work out without us losing our house or going bankrupt or anything else awful happening, and it appears that it's all going to come together.
I'm sure the first week will be rough - just me and Leaf. The week after will not be much better - me, Leaf, and Acorn, trying to find a rhythm that works for us. But I'm also hoping to be able to document and write and photograph and bring you along on our journey.
Wish us luck!
I am taking a 6 month sabbatical leave from work (unpaid), to stay home and take care of Acorn and Leaf. I have less than two full weeks of work left right now. Even as I write it, it sounds surreal. There's so much priviledge tied up in that statement that it scares me - I can afford to walk away from my job, for Pete's sake!
Leaf is getting a feeding tube so she can come home. She eats, but wears out before she finishes any given feeding. She breastfeeds better than she bottle feeds (yay mama milk!) and so we'll be working on that a lot. She's still on oxygen too - more than they'd like, but after Acorn, we're all sure we'll be just fine.
Acorn is leaving daycare. We can't risk the germs this winter. It feels awful to pull him now that he's finally getting the hang of it, but there's nothing to be done for it. We'll be out to some carefully screened low-germ playdates each week, and we'll be doing "homeschool" preschool type things at home too. He's recently discovered coloring, so I'm hoping that will make for some fun afternoons with crayons and markers and paint.
Needless to say, there are some dramatic lifestyle changes involved too. We're losing more than half of our income, and will be paying out of pocket for health insurance (and we can't go without - the kids have too many bills, and won't qualify for any of the low-cost plans; Leaf loses medicaid in May and Acorn in July). We'll have to budget much much better. We'll be eating out less and spending our pennies carefully, trying not to dip into savings during this time. We'll be debt free other than our house, thanks to an AFLAC policy that pays for each day in the hospital....and between Leaf and I, we've had a lot of those days this year. We have 2 cars, one new and the other nearly new, that are in good working condition. We're starting out with a well stocked pantry (if I make it to costco next weekend). My kids get WIC because they're on medicaid.
And, if things work out that way, I can theoretically return to work this spring without issue (technically, they don't have to hold my job, but since I'm covering 2 people's worth of work, and have been for over a year because they can't fill the other spot, the likelihood of not getting *this* job back, much less any job here at the company, is miniscule).
We're amazingly blessed to have this all work out. When we first started talking about it, I asked my Gods to help pave the way - to make it work out without us losing our house or going bankrupt or anything else awful happening, and it appears that it's all going to come together.
I'm sure the first week will be rough - just me and Leaf. The week after will not be much better - me, Leaf, and Acorn, trying to find a rhythm that works for us. But I'm also hoping to be able to document and write and photograph and bring you along on our journey.
Wish us luck!
Saturday, October 8, 2011
My Xtracycle
Last summer (ie, 2010), we started talking about getting Acorn out on bike rides. He was still on oxygen at the time, which was a problem. We could put him in a bike trailer, but he couldn't talk, so we were concerned about our ability to know if there was a problem with him so far back from the rider. I know parents of typical toddlers and preschoolers who have the same concerns about trailers, so it didn't seem too far fetched to worry that it wasn't going to work.
We did a lot of talking and a lot of investigating, and finally settled on buying an Xtracycle Free Radical conversion kit. This turns a regular bicycle into a long wheel base cargo bike. They have lots of interesting accessories like saddle bags and kid seats. So, here's what we did:
Took the rear wheel off my Schwinn:
Put the wheel back on:
Added deck and saddle bags:
And finally, installed PeaPod seat:
Of course, by the time we made a decision, ordered it, and got it built, Acorn was off oxygen, but at the rate we're going, Leaf will be on oxygen for a while anyway and we'll use it for her instead. Besides, this gives us the opportunity to go grocery shopping for small quantities of groceries too - the store is only 2 miles away; why take a whole car for just a couple of bags?
I still don't have an action shot - Acorn is pretty anti-helmet, and wouldn't sit in the PeaPod with the
We did a lot of talking and a lot of investigating, and finally settled on buying an Xtracycle Free Radical conversion kit. This turns a regular bicycle into a long wheel base cargo bike. They have lots of interesting accessories like saddle bags and kid seats. So, here's what we did:
Unpacked the Free Radical Kit:
Assembled it to the bike:
Added deck and saddle bags:
And finally, installed PeaPod seat:
Of course, by the time we made a decision, ordered it, and got it built, Acorn was off oxygen, but at the rate we're going, Leaf will be on oxygen for a while anyway and we'll use it for her instead. Besides, this gives us the opportunity to go grocery shopping for small quantities of groceries too - the store is only 2 miles away; why take a whole car for just a couple of bags?
I still don't have an action shot - Acorn is pretty anti-helmet, and wouldn't sit in the PeaPod with the
front crossbar installed, so it's been a few weeks of work to get him to sit in it. I think that now if we can get him in it, get his helmet on, and get moving fairly quickly, it'll work out ok - once we're moving, he's pretty pleased. I'm definitely hoping to get some biking in yet this fall, assuming the weather cooperates.
Thursday, October 6, 2011
Sensory Bins
I'm home with Acorn today - he's got Hand, Foot, and Mouth Disease. The pediatrician said he could go back to daycare as long as he was fever free (and since we know he got it there because half the class had it 2 weeks ago, that doesn't bother me), but the daycare said he couldn't come back if he was getting new spots....and with this morning's level of crankiness, there was no sense in even trying it.
Our homeschooling totschool/preschool work ground to a halt without the support of nurses over the last year, but there are still things I want to do with Acorn (and with Leaf), so we're just going to move forward as time permits.
Over nap time, I put together our first sensory bin (and this post!). I'm hoping to do a theme twice a month for now, to give Acorn something interesting to do other than the TV - he's totally fixated on it, largely because of nurses who played videos instead of doing other things we'd offered up.
Our theme for the rest of October is Halloween?Samhain.
First, since I'm working on a budget, I started with a dish pan I've owned for more than a decade, and the last of our white rice (about 6 cups; we could use more for this in the future - I see a Costco run in my future).
I debated buying birdseed for this, but I'm thinking I'll do that for next month. I also thought about making colored rice, but I can't help but think that one of these days I'm going to want to put 2 colors together, and then what will I do, sort through them all grain by grain to separate the colors again?
I then got all of our little bits and pieces together for this theme:
There's also a pair of big tweezers going in here, and possibly orange and black pompoms if I can remember where I hid them.
Finally, I threw it all together:
Not bad for a first attempt done with almost no planning, don't you think?
Tuesday, August 9, 2011
thoughts on nursing
I've been trying to write a post on having nurses at home for months. Not that I don't appreciate them, but it's appreciation tempered with irritation.
Having nursing at home is like a cross between having a roommate and having a houseguest who overstays their welcome. There's no privacy - at least when you have a roommate, your roommate is usually as invested in privacy as you are.
We have 5 nurses in our house each week. Each of them has their own quirks. And their interactions with each other make most polyamorous relationships look sane. Think Jerry Springer material, and you'd be close.
We had a nurse who was marking the equipment with an ink pen, to see if others were cleaning the way she thought they should...except that the pen marks still won't come off. Another is afraid to write anything about the pen marks in the communication book, because she thinks someone else will go off on her and then call and get her fired.
Acorn's nebulizer parts and syringes have migrated from the shelf in his room to the bathroom. His trach care supplies have migrated from the closet to the dresser. He's developed a stack of blankets on the nightstand, when they're supposed to be in the closet...and even if I leave a blanket on him when he goes to bed, and put the others away, there's at least one new one on the night stand the next morning. I keep finding a stack of books over the vent in his room....which has a lever to close it if it's too cold. One nurse puts a new diaper cover on every other diaper...and we only own 7 of them, so he's usually out of covers at the end of her shift. Another refuses to use the prefolds - not that she can't, but she won't, and she won't have him sit on the potty either.
When it's good, it's good - no sitting up all night suctioning, no worrying something will go wrong and they won't know what to do. We have consistent people who show up for their shifts.
When it's bad, it's awful. We've never had someone show up who couldn't change a trach, but I know people who have. Our nurses have never eaten all our food, but I know a family who's had that happen too. I know people who've found their nurse sleeping through their child's vent and pulse ox alarming. In most cases, no nurse is better than a bad nurse.
This past week, one nurse decided that crying and stomping his feet because she didn't put in the video he wanted warranted a time out....in his high chair. That's right - my kid who is still in feeding therapy, even though we're g-tube free, is being punished by being put in the same place we're trying to make enjoyable. Oh, and no time limit on her time outs - if my 3-year-old took 10 minutes to calm down, that's how long he sat there.
Needless to say, we had a long talk.
One night nurse has decided to park in the driveway. Either behind one of our cars, or only half way up the driveway. So...if she gets to talking with the day nurse, we can't get out to go to work, and then she's cranky about being asked to move her car.
You know, I'm sure daycare will have its issues....but I'm so looking forward to having my house to myself and having things stay where I put them.
Having nursing at home is like a cross between having a roommate and having a houseguest who overstays their welcome. There's no privacy - at least when you have a roommate, your roommate is usually as invested in privacy as you are.
We have 5 nurses in our house each week. Each of them has their own quirks. And their interactions with each other make most polyamorous relationships look sane. Think Jerry Springer material, and you'd be close.
We had a nurse who was marking the equipment with an ink pen, to see if others were cleaning the way she thought they should...except that the pen marks still won't come off. Another is afraid to write anything about the pen marks in the communication book, because she thinks someone else will go off on her and then call and get her fired.
Acorn's nebulizer parts and syringes have migrated from the shelf in his room to the bathroom. His trach care supplies have migrated from the closet to the dresser. He's developed a stack of blankets on the nightstand, when they're supposed to be in the closet...and even if I leave a blanket on him when he goes to bed, and put the others away, there's at least one new one on the night stand the next morning. I keep finding a stack of books over the vent in his room....which has a lever to close it if it's too cold. One nurse puts a new diaper cover on every other diaper...and we only own 7 of them, so he's usually out of covers at the end of her shift. Another refuses to use the prefolds - not that she can't, but she won't, and she won't have him sit on the potty either.
When it's good, it's good - no sitting up all night suctioning, no worrying something will go wrong and they won't know what to do. We have consistent people who show up for their shifts.
When it's bad, it's awful. We've never had someone show up who couldn't change a trach, but I know people who have. Our nurses have never eaten all our food, but I know a family who's had that happen too. I know people who've found their nurse sleeping through their child's vent and pulse ox alarming. In most cases, no nurse is better than a bad nurse.
This past week, one nurse decided that crying and stomping his feet because she didn't put in the video he wanted warranted a time out....in his high chair. That's right - my kid who is still in feeding therapy, even though we're g-tube free, is being punished by being put in the same place we're trying to make enjoyable. Oh, and no time limit on her time outs - if my 3-year-old took 10 minutes to calm down, that's how long he sat there.
Needless to say, we had a long talk.
One night nurse has decided to park in the driveway. Either behind one of our cars, or only half way up the driveway. So...if she gets to talking with the day nurse, we can't get out to go to work, and then she's cranky about being asked to move her car.
You know, I'm sure daycare will have its issues....but I'm so looking forward to having my house to myself and having things stay where I put them.
Monday, July 4, 2011
a week of the same
It's been a whole week since my last update. You'd think that'd mean I had something to report, but no...only that Leaf is now in actual Pampers preemie sized diapers (with the smell that will always remind me of the NICU), and still growing (on her own little curve, below 10th percentile, when she was 10th percentile at birth, but then fell behind in trying to regain her birth weight).
We're all frustrated - even the docs. It sounds like there will be much more discussion this week (after several weeks of her being a major topic at their conferences), because the options are limited - try diuretics again and keep a closer watch on her electrolytes, put her back on the vent to try to open up the little air sacs, go in and ligate her PDA, do nothing and wait and see....all have their risks.
For all that they keep reminding me that she's not Acorn, they're now starting to see the ways that she's so much like him - so obviously his sister. And unfortunately, the things they see are not the nose they both share, or their amazingly long toes...it's that Acorn was so so hard to get off the vent, and then even worse to get off CPAP, and Leaf is just as hard.
Tomorrow it's off to the surgeon to get Acorn's g-tube looked at, and to discuss (and hopefully complete) removal. Hopefully I'll get up early enough to fill his wading pool so he can go out and splash to his heart's content when he gets up from his nap.
Tonight he's cranky and skittish. Not entirely sure what happened with his nurse today while we were gone. I hate this part of having nurses.
As for me, I'm hanging in here. Some days are better than others (shoot, some hours are better than others). Pumping is going better than expected, which helps, but it's still time consuming and draining. In my copious spare time (hahahahaha) I'm working on a little project, which I'll be saying more about in the weeks to come.
And now, off to get back to writing on that project, and listening to the fireworks in the distance, and hoping that Acorn actually goes to sleep finally.
We're all frustrated - even the docs. It sounds like there will be much more discussion this week (after several weeks of her being a major topic at their conferences), because the options are limited - try diuretics again and keep a closer watch on her electrolytes, put her back on the vent to try to open up the little air sacs, go in and ligate her PDA, do nothing and wait and see....all have their risks.
For all that they keep reminding me that she's not Acorn, they're now starting to see the ways that she's so much like him - so obviously his sister. And unfortunately, the things they see are not the nose they both share, or their amazingly long toes...it's that Acorn was so so hard to get off the vent, and then even worse to get off CPAP, and Leaf is just as hard.
Tomorrow it's off to the surgeon to get Acorn's g-tube looked at, and to discuss (and hopefully complete) removal. Hopefully I'll get up early enough to fill his wading pool so he can go out and splash to his heart's content when he gets up from his nap.
Tonight he's cranky and skittish. Not entirely sure what happened with his nurse today while we were gone. I hate this part of having nurses.
As for me, I'm hanging in here. Some days are better than others (shoot, some hours are better than others). Pumping is going better than expected, which helps, but it's still time consuming and draining. In my copious spare time (hahahahaha) I'm working on a little project, which I'll be saying more about in the weeks to come.
And now, off to get back to writing on that project, and listening to the fireworks in the distance, and hoping that Acorn actually goes to sleep finally.
Tuesday, June 7, 2011
Updates and random thoughts
I've been terrible at writing lately. Mostly, it's because everything here is chaos...and part of the chaos right now includes a barely functioning computer.
Thing is, I need to write. Need to process everything that's gone on recently. Need to let the tears flow that I've been holding back for weeks - and that is such an overwhelming idea that I don't even know where to start.
So I guess let's start with right now.
Miss Leaf will be 2 weeks old tomorrow. She's doing well. She's getting some breastmilk, and doing a lot of normal baby things (pee, poop, cry, sleep), she just does them in a plastic box, with lots of tubes taped to her face.
I'm finally home - a week as of tomorrow. Physically, I'm easily worn out, but haven't really even taken much ibuprofen in the last 5 or 6 days, because it's not an issue of pain. I'm spending a lot of time with my breastpump (it's a love-hate relationship....mostly hate, though). Pumping is going ok; I'm desperately hoping that we can start actual breastfeeding in a couple of weeks though, because pumping did not work out so well with Acorn.
Emotionally....well, the "post partum adjustment" social worker did tell me that it was normal to be extra emotional the first 3 weeks or so post partum, and we've definitely hit that extra emotional patch.
It doesn't help that a friend passed away last week from a complication of childbirth.
Anyway. It's time for sleep, so I give up for now.
Thing is, I need to write. Need to process everything that's gone on recently. Need to let the tears flow that I've been holding back for weeks - and that is such an overwhelming idea that I don't even know where to start.
So I guess let's start with right now.
Miss Leaf will be 2 weeks old tomorrow. She's doing well. She's getting some breastmilk, and doing a lot of normal baby things (pee, poop, cry, sleep), she just does them in a plastic box, with lots of tubes taped to her face.
I'm finally home - a week as of tomorrow. Physically, I'm easily worn out, but haven't really even taken much ibuprofen in the last 5 or 6 days, because it's not an issue of pain. I'm spending a lot of time with my breastpump (it's a love-hate relationship....mostly hate, though). Pumping is going ok; I'm desperately hoping that we can start actual breastfeeding in a couple of weeks though, because pumping did not work out so well with Acorn.
Emotionally....well, the "post partum adjustment" social worker did tell me that it was normal to be extra emotional the first 3 weeks or so post partum, and we've definitely hit that extra emotional patch.
It doesn't help that a friend passed away last week from a complication of childbirth.
Anyway. It's time for sleep, so I give up for now.
Monday, March 21, 2011
I used to have a life...
Friday I went to lunch with some coworkers. I mentioned that we were going to the movies - likely our last evening out for a while, since we're likely to be trach-free (and thus nurse-free) at the end of April. He mentioned that with two kids, they didn't get out much. "I used to have a life" he said.
I thought about it quietly, as the topic shifted to other things.
I used to have a life where I worked in a nuclear power plant. Really. It may have been the best job I've ever had, other than the fact that it was the same old same old every day, and likely to end when the existing plants are decommissioned. I watch the situation in Japan with a mixture of horror and profound respect for those workers who have stayed behind - I know the folks I worked with would have done the same. Their families all lived close, so if an emergency arose, it was fix it, or their families took the worst of it.
I used to have a life where I was, primarily, an artist. School was a thing that I did between artwork. The pay wasn't great, but I was amazingly peaceful.
I used to have a life where I had plenty of spare money to spend on things I wanted. I don't know, looking back, that I was all that happy, but at least I had expendable cash to chase happiness with.
I used to have a life where I didn't worry about oxygen saturations, feeding schedules, high risk pregnancies, or a million other little details that are now an every day thing.
But...I'm not sure that means I don't have a life now, you know? It's just not the same as any of the other lives I've had before.
I thought about it quietly, as the topic shifted to other things.
I used to have a life where I worked in a nuclear power plant. Really. It may have been the best job I've ever had, other than the fact that it was the same old same old every day, and likely to end when the existing plants are decommissioned. I watch the situation in Japan with a mixture of horror and profound respect for those workers who have stayed behind - I know the folks I worked with would have done the same. Their families all lived close, so if an emergency arose, it was fix it, or their families took the worst of it.
I used to have a life where I was, primarily, an artist. School was a thing that I did between artwork. The pay wasn't great, but I was amazingly peaceful.
I used to have a life where I had plenty of spare money to spend on things I wanted. I don't know, looking back, that I was all that happy, but at least I had expendable cash to chase happiness with.
I used to have a life where I didn't worry about oxygen saturations, feeding schedules, high risk pregnancies, or a million other little details that are now an every day thing.
But...I'm not sure that means I don't have a life now, you know? It's just not the same as any of the other lives I've had before.
Thursday, March 17, 2011
Living with Fear
I don't know about all special needs parents - I only know my own experiences, and those of the support groups I'm active in.
But I suspect most of us, particularly kids with medical issues that leave us dependent on technological gear and little pieces of plastic, live with a secret: we're terrified.
Oh sure, most days we go about our lives, living them just like everyone else (or as much like everyone else as it gets when you're hauling around a kid with wires and tubes attached to beeping boxes covered in lights). But burried deep in our hearts is fear.
Most of it is fear of what if:
What if the power goes out
What if we're in a car accident and no one who comes knows how to suction
What if we can't get our supplies
What if I lose my job and thus our insurance
What if my child stops breathing...or worse, what if they stop breathing and I can't get them started again.
What if this formula doesn't work for my child either
What if this procedure doesn't work. Or the next one. Or the next.
What if we've missed something.
Many of us live with the knowledge (which I've written about before) that children die. Children like ours, with the same diagnosis as ours, and the same equipment. And we're sometimes not sure why our child lives, while others so similar don't.
This week fear came home to roost for some of us. Someone we know, with a child with a trach, lives in Japan, though the mother and children are Canadian citizens. They lived between Tokyo and the damaged nuclear reactor. They can't get reliable power, don't have a suction pump capable of making the flight to North America, and can't get to anywhere else that's any safer.
And we're all living this experience vicariously - knowing that (hopefully) we've planned for every possible natural disaster known to us....and yet, clearly, it's not that simple, because this family can't stay in their home, can't afford to fly to Canada, and can't seem to get enough help to get out.
This week we're watching someone we know live some of our worst nightmares. It hits far far far too close to home for comfort.
As close as we are to decannulation, I can't help but think "what if it was us" - and I know a lot of other parents thinking the same things right now. I can only hope we're all lucky enough to never find out first hand.
But I suspect most of us, particularly kids with medical issues that leave us dependent on technological gear and little pieces of plastic, live with a secret: we're terrified.
Oh sure, most days we go about our lives, living them just like everyone else (or as much like everyone else as it gets when you're hauling around a kid with wires and tubes attached to beeping boxes covered in lights). But burried deep in our hearts is fear.
Most of it is fear of what if:
What if the power goes out
What if we're in a car accident and no one who comes knows how to suction
What if we can't get our supplies
What if I lose my job and thus our insurance
What if my child stops breathing...or worse, what if they stop breathing and I can't get them started again.
What if this formula doesn't work for my child either
What if this procedure doesn't work. Or the next one. Or the next.
What if we've missed something.
Many of us live with the knowledge (which I've written about before) that children die. Children like ours, with the same diagnosis as ours, and the same equipment. And we're sometimes not sure why our child lives, while others so similar don't.
This week fear came home to roost for some of us. Someone we know, with a child with a trach, lives in Japan, though the mother and children are Canadian citizens. They lived between Tokyo and the damaged nuclear reactor. They can't get reliable power, don't have a suction pump capable of making the flight to North America, and can't get to anywhere else that's any safer.
And we're all living this experience vicariously - knowing that (hopefully) we've planned for every possible natural disaster known to us....and yet, clearly, it's not that simple, because this family can't stay in their home, can't afford to fly to Canada, and can't seem to get enough help to get out.
This week we're watching someone we know live some of our worst nightmares. It hits far far far too close to home for comfort.
As close as we are to decannulation, I can't help but think "what if it was us" - and I know a lot of other parents thinking the same things right now. I can only hope we're all lucky enough to never find out first hand.
Thursday, March 3, 2011
stream of consciousness
If you could call this consciousness.....
I'm tired. So amazingly tired. I could take a day off and sleep, but that'd only fix things for the next few days, and we'd be right back here again.
I'm tired of being sick. Tired of sinus headaches.
Tired of snot.
Which, you know, is not going to be fixed by having another baby. But still. Not having to suction Acorn's trach, when his trach comes out, will be nice. He appears to be over the sinus ick, but my husband was going back to the doctor again today, because a week of antibiotics haven't touched the color of his snot, and he still sounds like crap.
I think I'm having an existential crisis some days - I think I know what I want to be when I grow up, but I can't figure out how to get there from here, without losing important things like our house and our health insurance.
In case it isn't already obvious, health insurance is pretty darn important here.
Our nurses are driving me nuts. Lots of catty back-stabbing crap - I've almost sent people home in the last 2 weeks over drama that shouldn't be my problem. I sent an email to the nursing manager yesterday asking for some help with an across the board, "check your attitude at the door" warning; I don't want to fire anyone right now.
Have I mentioned that we have a plan for decannulation? This spring? probably within the next 8 weeks? No sense in trying to train a new nurse now.
It seems that the morning sickness is winding down somewhat, although the sinus headaches aren't helping. I'm at least eating normal amounts....as long as it's spread out, a bit here and a bit there, every hour through the day.
*****
Somewhat fittingly, or at least typical of this life of mine, my stream of thought was interrupted by an emergency phone call from home.
Acorn started vomiting, and then nearly passed out - he went sheet white, then gray, then sort of floppy, though he never lost consciousness.
The upshot (other than a dozen bouts of vomiting in less than a dozen hours) is that his throat still looks raw, but his ears are better, so the throat thing is likely viral...and some of the virus strains running around right now come with vomiting for little ones.
For all our work to get to no feeding tube...tonight I think we'll be glad we have it, because all he wants to drink is milk, and he cannot keep milk down thus far. In an hour or so I need to go give him a little bit of pedialyte and see how it goes.
I am desperately hoping for a sound nights' sleep for all of us.
I'm tired. So amazingly tired. I could take a day off and sleep, but that'd only fix things for the next few days, and we'd be right back here again.
I'm tired of being sick. Tired of sinus headaches.
Tired of snot.
Which, you know, is not going to be fixed by having another baby. But still. Not having to suction Acorn's trach, when his trach comes out, will be nice. He appears to be over the sinus ick, but my husband was going back to the doctor again today, because a week of antibiotics haven't touched the color of his snot, and he still sounds like crap.
I think I'm having an existential crisis some days - I think I know what I want to be when I grow up, but I can't figure out how to get there from here, without losing important things like our house and our health insurance.
In case it isn't already obvious, health insurance is pretty darn important here.
Our nurses are driving me nuts. Lots of catty back-stabbing crap - I've almost sent people home in the last 2 weeks over drama that shouldn't be my problem. I sent an email to the nursing manager yesterday asking for some help with an across the board, "check your attitude at the door" warning; I don't want to fire anyone right now.
Have I mentioned that we have a plan for decannulation? This spring? probably within the next 8 weeks? No sense in trying to train a new nurse now.
It seems that the morning sickness is winding down somewhat, although the sinus headaches aren't helping. I'm at least eating normal amounts....as long as it's spread out, a bit here and a bit there, every hour through the day.
*****
Somewhat fittingly, or at least typical of this life of mine, my stream of thought was interrupted by an emergency phone call from home.
Acorn started vomiting, and then nearly passed out - he went sheet white, then gray, then sort of floppy, though he never lost consciousness.
The upshot (other than a dozen bouts of vomiting in less than a dozen hours) is that his throat still looks raw, but his ears are better, so the throat thing is likely viral...and some of the virus strains running around right now come with vomiting for little ones.
For all our work to get to no feeding tube...tonight I think we'll be glad we have it, because all he wants to drink is milk, and he cannot keep milk down thus far. In an hour or so I need to go give him a little bit of pedialyte and see how it goes.
I am desperately hoping for a sound nights' sleep for all of us.
Monday, January 3, 2011
A Bit of Happy News
So, the long and short of it is, I'm pregnant!!!
I've spent weeks trying to figure out when to say it, how to say it. But I'm just so amazingly happy about it that I figured it was better to share, so I could actually say something about it, because I'm ready to burst. I'd hoped to wait until next week, when we have an ultrasound scheduled to check for a heartbeat and such.
And then last night I outed myself on twitter hoping for help with the severe morning sickness I've been dealing with, because I reached a breaking point, having thrown up every single time I ate yesterday, except one (right before bed).
This little one was conceived without the use of fertility drugs - something we did not think was possible for us, so all I can assume is divine intervention. There are a couple of Goddesses who will have chocolate and other goodies when it is next appropriate to do so. We had been sure that this fall was the right time to try again, until some family things for next summer came up that meant putting it off for better timing...but if an opportunity to try without drugs was going to present itself, at the time we originally felt was right, who am I to argue?
While I'm already hating morning sickness (see above), and there were a lot of things about my pregnancy with Acorn that I wish had gone differently, I really enjoyed being pregnant, and I am finding little moments of joy in this pregnancy.
I love being able to sit here quietly, soaking in this feeling. The heavy feeling in my belly, even though baby is not nearly big enough to make anything feel like anything. The warm glow that nearly crackles across my skin at times - that same energy that makes people comment on how pregnant women just glow. The very spiritual and yet grounding realization that there is a person inside me, just waiting to come out and let us meet him or her.
I don't know that we'll be finding out the sex of this baby before its birth - we supposedly knew Acorn's, about as sure as we could be, and they were wrong. Not finding out would be less drama inducing, I think.
Mostly, though, I am praying. Praying a lot, daily - for a healthy baby, and a healthy full term pregnancy without complications. If you all wouldn't mind, I think we could use all the help we can get on that front.
I've spent weeks trying to figure out when to say it, how to say it. But I'm just so amazingly happy about it that I figured it was better to share, so I could actually say something about it, because I'm ready to burst. I'd hoped to wait until next week, when we have an ultrasound scheduled to check for a heartbeat and such.
And then last night I outed myself on twitter hoping for help with the severe morning sickness I've been dealing with, because I reached a breaking point, having thrown up every single time I ate yesterday, except one (right before bed).
This little one was conceived without the use of fertility drugs - something we did not think was possible for us, so all I can assume is divine intervention. There are a couple of Goddesses who will have chocolate and other goodies when it is next appropriate to do so. We had been sure that this fall was the right time to try again, until some family things for next summer came up that meant putting it off for better timing...but if an opportunity to try without drugs was going to present itself, at the time we originally felt was right, who am I to argue?
While I'm already hating morning sickness (see above), and there were a lot of things about my pregnancy with Acorn that I wish had gone differently, I really enjoyed being pregnant, and I am finding little moments of joy in this pregnancy.
I love being able to sit here quietly, soaking in this feeling. The heavy feeling in my belly, even though baby is not nearly big enough to make anything feel like anything. The warm glow that nearly crackles across my skin at times - that same energy that makes people comment on how pregnant women just glow. The very spiritual and yet grounding realization that there is a person inside me, just waiting to come out and let us meet him or her.
I don't know that we'll be finding out the sex of this baby before its birth - we supposedly knew Acorn's, about as sure as we could be, and they were wrong. Not finding out would be less drama inducing, I think.
Mostly, though, I am praying. Praying a lot, daily - for a healthy baby, and a healthy full term pregnancy without complications. If you all wouldn't mind, I think we could use all the help we can get on that front.
Friday, September 17, 2010
life gets in the way
You'd think, being a working mom with a special needs kid, that I'd be better at scheduling...but you'd be wrong, at least when it comes to scheduling me into the calendar. Things have been hectic the last couple of weeks. It shows in my writing, and my artwork...and in things like sleep and emotional stability
Acorn has seen cardiology, urology, pulmonology, orthotics, x-ray, PT/OT/ST (those three are every week), the psychologist (that's every week too), we've scheduled an IEP re-do for next week, and he's seen 3 of his 4 school based therapists this week.
Acorn is now off O2 when he's awake (mostly) and we're waiting for a surgery date from urology. And we've gotten through all of those appointments without screaming, panic, or sobbing. I guess the psychologist is worth what we're paying her, but it's still pricey.
One of our cats is dying, and has to be infused with fluids several times a week, plus multiple vet visits. Kidney failure is not fun, and we're discussing at what point we say enough is enough. For now, he's not quite himself, but not suffering either, so we soldier on in what we know is a losing battle.
My back has been getting progressively more stiff the last couple months, and I've had 4 migraines in the last month, so it finally became obvious that I needed to stop and regroup on the self-care front and find a chiropractor last week...because my back and hips hurt so much it brought tears to my eyes.
Where am I supposed to fit in 3 adjustments a week for the next month? Luckily, the new chiro has appointments right up to 6, and is super fast and less than 3 miles from home.
They don't do manual adjustments - they use a gun thingy, and some applied kinesiology - so it's a little more holistic than past chiros I've seen (or, "they're more woo than most" as my spouse puts it). The doctor I see in their office was quick to point out that she's been getting adjustments for years, but was still having migraines until recently, and that they don't push supplements because they're not going to sell things they haven't found on their own and used first.
For all that it seems more gentle than the manual adjustments I'd gotten before, it sure hurts like a manual adjustment after the fact. I've given up and taken motrin several times, and no, drinking more water...lots more water....isn't helping any.
They have an office dog too, which is nice, and a kid-specific adjustment room decorated like a jungle. Since Acorn is at risk of developing scoliosis, it wouldn't be a bad thing to get him in too, but schedules....
Tonight we have nursing straight through the night. Much though I'd like a nice quiet dinner and a movie, I think our to-do lists are long enough that we need to get stuff done instead.
Tomorrow is Pagan Pride Day, and I haven't gathered up supplies for the craft I'm teaching, nor have I really put together my notes for the workshop I'm doing on toddlers and energy work.
Tomorrow is also karate test day. I'm going for my red belt, which means I'm at the half way point to being a black belt - take that, people who think that we can "fix" fat by exercising, or that all fat people do is sit around watching TV. The guy who broke into the house two winters ago sure regretted it, and I was only just barely an orange belt then.
Tomorrow is also, of course, chiropractor day again too. Ouch
Sunday is bead and stone shopping day, as K and I are heading to a trunk show for one of my suppliers.
And somewhere in there I have orders to fill, a website to work on, and an IEP meeting to prepare for.
Sleep? Who needs sleep?
Acorn has seen cardiology, urology, pulmonology, orthotics, x-ray, PT/OT/ST (those three are every week), the psychologist (that's every week too), we've scheduled an IEP re-do for next week, and he's seen 3 of his 4 school based therapists this week.
Acorn is now off O2 when he's awake (mostly) and we're waiting for a surgery date from urology. And we've gotten through all of those appointments without screaming, panic, or sobbing. I guess the psychologist is worth what we're paying her, but it's still pricey.
One of our cats is dying, and has to be infused with fluids several times a week, plus multiple vet visits. Kidney failure is not fun, and we're discussing at what point we say enough is enough. For now, he's not quite himself, but not suffering either, so we soldier on in what we know is a losing battle.
My back has been getting progressively more stiff the last couple months, and I've had 4 migraines in the last month, so it finally became obvious that I needed to stop and regroup on the self-care front and find a chiropractor last week...because my back and hips hurt so much it brought tears to my eyes.
Where am I supposed to fit in 3 adjustments a week for the next month? Luckily, the new chiro has appointments right up to 6, and is super fast and less than 3 miles from home.
They don't do manual adjustments - they use a gun thingy, and some applied kinesiology - so it's a little more holistic than past chiros I've seen (or, "they're more woo than most" as my spouse puts it). The doctor I see in their office was quick to point out that she's been getting adjustments for years, but was still having migraines until recently, and that they don't push supplements because they're not going to sell things they haven't found on their own and used first.
For all that it seems more gentle than the manual adjustments I'd gotten before, it sure hurts like a manual adjustment after the fact. I've given up and taken motrin several times, and no, drinking more water...lots more water....isn't helping any.
They have an office dog too, which is nice, and a kid-specific adjustment room decorated like a jungle. Since Acorn is at risk of developing scoliosis, it wouldn't be a bad thing to get him in too, but schedules....
Tonight we have nursing straight through the night. Much though I'd like a nice quiet dinner and a movie, I think our to-do lists are long enough that we need to get stuff done instead.
Tomorrow is Pagan Pride Day, and I haven't gathered up supplies for the craft I'm teaching, nor have I really put together my notes for the workshop I'm doing on toddlers and energy work.
Tomorrow is also karate test day. I'm going for my red belt, which means I'm at the half way point to being a black belt - take that, people who think that we can "fix" fat by exercising, or that all fat people do is sit around watching TV. The guy who broke into the house two winters ago sure regretted it, and I was only just barely an orange belt then.
Tomorrow is also, of course, chiropractor day again too. Ouch
Sunday is bead and stone shopping day, as K and I are heading to a trunk show for one of my suppliers.
And somewhere in there I have orders to fill, a website to work on, and an IEP meeting to prepare for.
Sleep? Who needs sleep?
Tuesday, September 7, 2010
Why you should read my blog
My friend @kysilka posted this challenge:
I hereby challenge YOU to write a blog post on one of the following two topics.
1. Ten Reasons Why You Should Read [Whatever it is I Write], or
2. Why I Write.
So, I'm pretty sure I won't get to ten reasons, but here's a good start:
1. My kid is super cute, and while I don't post many pictures, sometimes I give you a little boost for the day:
2. How many Pagan moms with special needs kids are there anyway?
3. Even more than that, a Pagan mom with a special needs child who's medically fragile but getting better every day? I'm sure you like to cheer along with us for all our little successes, like eating:
4. If you've ever wondered about cloth diapers, potty training, and potty training without buying a zillion throw-away trainers, you should read my blog.
5. Or, if you think I'm occasionaly interesting or insightful. Or if you find me irritating. I mean, really, why should I justify how you spend your time?
Hm. That's 5. That's half way. Which I guess means this is a half-a$$ job, but that's what you get when I'm up to my eyeballs at work.
I hereby challenge YOU to write a blog post on one of the following two topics.
1. Ten Reasons Why You Should Read [Whatever it is I Write], or
2. Why I Write.
So, I'm pretty sure I won't get to ten reasons, but here's a good start:
1. My kid is super cute, and while I don't post many pictures, sometimes I give you a little boost for the day:
2. How many Pagan moms with special needs kids are there anyway?
3. Even more than that, a Pagan mom with a special needs child who's medically fragile but getting better every day? I'm sure you like to cheer along with us for all our little successes, like eating:
4. If you've ever wondered about cloth diapers, potty training, and potty training without buying a zillion throw-away trainers, you should read my blog.
5. Or, if you think I'm occasionaly interesting or insightful. Or if you find me irritating. I mean, really, why should I justify how you spend your time?
Hm. That's 5. That's half way. Which I guess means this is a half-a$$ job, but that's what you get when I'm up to my eyeballs at work.
Monday, August 30, 2010
Sorry for the lag...
Yeah, I know I'm behind here, not posting much recently.
It's been busy :)
Acorn was sick - 3 doctor visits in 10 days, lots of extra oxygen, a chest x-ray, fevers reaching 104°....and then it was done, and things are slowly getting back to normal.
Acorn finally re-started OT, and so there's a new therapist who I think will do just fine. He also got a new PT, because the other one got promoted. We all think the new one is an improvement over the old one anyway.
We had a new nurse this month, she lasted 3 shifts before I fired her, and her 4th shift sealed the deal - any nurse who tells me, as my kid is coughing and sputtering, that she isn't comfortable suctioning in a moving car, and could I please pull over, is just not going to work. Frankly, if I have to pull over for her to suction, I could just do it myself.
We were supposed to be going to Pagan Pride Day, but it got rescheduled. Whether or not Acorn goes is now up in the air, because we'd arranged for no nursing that day on purpose - can't very well drag our very Christian nurses to a Pagan festival. He can probably go for part of it, though, because we usually don't have nursing all day on Saturdays.
We went to a powwow. I miss vending at events like this, but it's just not been feasible to this point. Maybe next year...or maybe I'll just get my butt in gear and get into a couple galleries instead. I'm still torn on that point, and on how I'd set up a booth these days if I had one, much less how I'd keep Acorn from wandering off.
We're also building out an Xtracycle - a cargo bike, which we're putting a child seat on for Acorn. First bike ride coming soon, we hope, and there will be a whole post on the bike building.
Potty training took a back seat to illness, but more review posts are coming too.
It's been busy :)
Acorn was sick - 3 doctor visits in 10 days, lots of extra oxygen, a chest x-ray, fevers reaching 104°....and then it was done, and things are slowly getting back to normal.
Acorn finally re-started OT, and so there's a new therapist who I think will do just fine. He also got a new PT, because the other one got promoted. We all think the new one is an improvement over the old one anyway.
We had a new nurse this month, she lasted 3 shifts before I fired her, and her 4th shift sealed the deal - any nurse who tells me, as my kid is coughing and sputtering, that she isn't comfortable suctioning in a moving car, and could I please pull over, is just not going to work. Frankly, if I have to pull over for her to suction, I could just do it myself.
We were supposed to be going to Pagan Pride Day, but it got rescheduled. Whether or not Acorn goes is now up in the air, because we'd arranged for no nursing that day on purpose - can't very well drag our very Christian nurses to a Pagan festival. He can probably go for part of it, though, because we usually don't have nursing all day on Saturdays.
We went to a powwow. I miss vending at events like this, but it's just not been feasible to this point. Maybe next year...or maybe I'll just get my butt in gear and get into a couple galleries instead. I'm still torn on that point, and on how I'd set up a booth these days if I had one, much less how I'd keep Acorn from wandering off.
We're also building out an Xtracycle - a cargo bike, which we're putting a child seat on for Acorn. First bike ride coming soon, we hope, and there will be a whole post on the bike building.
Potty training took a back seat to illness, but more review posts are coming too.
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