Monday, December 16, 2013
The thing is...this sort of experience always make me grieve for others, not so much for us.
We know Leaf will get better in a couple days. We're pretty sure we'll be able to get her trach out in the spring. She walks, she signs, even if she's not talking yet. She's still eating partly by tube, but making progress. Cognitively, she appears to be just fine.
Acorn too, improves each week. He can ride a bike (with training wheels) and write his name. He can do puzzles like a pro, which is new this month. School is going well, with a few bumps, and they believe he's quite smart, that he grasps phonics, that he might be reading some words.
But we have friends who are not blessed this way. Friends whose children will always have trachs and feeding tubes. Friends whose children will never walk or talk. Friends whose children will likely need life long care, for as long as their lives are. Friends whose children face "life limiting" conditions (the polite way of saying that they will die before their parents do). Friends whose children have been through more than twice as many surgeries as my two combined, and who still have many more to go.
It's all about perspective, and it's a complicated way of looking at the world.
Monday, December 9, 2013
Yesterday we went to a local Pagan event, held at a nearby city's community center.
The event was exactly as described - lots of cookies on tables, walk around and fill your box of cookies. The cookies have so far been very tasty, and the money raised is going towards funding a building for the local Pagan community, which will be quite welcome.
What was unexpected was the method of getting to the room that the organizers found themselves in:
Yes, that is our double stroller, exactly as long as the elevator is wide, and almost as wide as it was deep. There was not room for 2 adults in the elevator with the stroller - in fact, it was a challenge for me to push the button myself once we were wedged in there.
You know, I get that we're a little strange taking the kids so many places, and that the fact that my 5 year old is often in a stroller is a bit strange too (though if you'd ever chased him through a mall, or had him bolt in a parking lot, you'd totally get why he's there).
But I wonder how many people besides us have found this elevator challenging?
It was clearly put in sometime after the building was built.And I suppose it's better than nothing. But still....
Monday, November 25, 2013
There are basically 3 ways Pagan groups and events handle children. (1) No children, (2) Children are allowed if they can follow an adult standard of behavior that parents are expected to police, (3) Your kids, your problem - you want to let them run loose, great, if not, you figure out how to keep them under control. There are a very few places that offer some sort of childcare, and when they do, it's usually organized by a parent.
Festival wise, I have a hard time justifying spending several hundred dollars to attend a weekend festival where I'll be lucky to participate in more than 2-3 scheduled events. If my husband and I each take a shift with both children so the other one can have a child free shift, and then we each take a shift with each of the children to do something fun with them independently, that's 4 shifts, and by the time you add in meals and a super early bedtime for Acorn, and that's probably most of the day.
Additionally, it's not like my children are old enough for me to leave them in a tent asleep while my husband and I do something fun after dark, so evening things are basically out, unless we each take a night solo (and really....what's the fun in that?).
This even boils over into teaching - because if I use one of my slots of time with no children to teach, then I really have very limited time to enjoy the rest of the event.
Even with childcare...we're probably still in that sort of spot, though Acorn could probably manage childcare if they were prepared for him (though given the difficulties finding him a babysitter, I'm guessing that most places still wouldn't keep him). Some places assume a more laissez faire, free range sort of child policy, and my kids are just not safe that way at this point - I desperately wish that they were, but to practice free range parenting your child has to be able (and willing) to consider the best course of action, and Acorn is not there yet - and Leaf is too young to expect that.
For local ritual groups, the same situation would apply either I have to find someone to babysit, or I have to find a way to convince my children to be still and quiet at all times, and to only act appropriately....and let's just say we're not there yet.
I wish more Pagan groups would get on with realizing that parents can still be active members with the right support, and that children aren't an annoyance to put in the closet.
I strongly suggest that you read Don't Leave Your Friends Behind, which is a book about parenting and social justice movements if you're interested in other ideas for how we could do better for families. (that's an affiliate link, by the way).
Friday, November 15, 2013
While those groups that those new families find first are useful...I feel lately like I'm putting far more into them than I'm getting out of them. There are so many things we have done...and the things that are new to us are generally not things that families who are new to this special needs life really are going to know about.
It's not likely that we'll ever be a completely typical family - some of the kids' needs are going to continue indefinitely. But I'm thinking it's time to take a break from many of the groups I've been a part of for the last few years. Maybe I'll go back sometime.
Friday, November 8, 2013
I'm thankful that my children are alive. Many go through less and are not so lucky. Many do not get to see their children grow up.
I'm thankful my children can walk. Many never do, or lose the ability to.
I'm thankful my children can eat. Even when I'm annoyed by the what and how....there are children who never develop the necessary skills to do so, and children for whom most or all foods are unsafe.
I'm thankful my children can make sounds. I'm not always thankful for the volume or pitch of those sounds, but we went so long without hearing either one's voice that I will never wish they should just shut up. Many parents I know tell me that some day I'll wish they stop talking, but I can't imagine that ever being possible. There are parents who will never hear their children's voices, and parents whose children have passed who will never hear their voices again.
I'm thankful that my children communicate at all. It has been a struggle, and we're all often frustrated, but there are others for whom communication is not so easy.
I'm thankful my children can breathe. Sometimes that's a little sketchy, but for something we all do continually, I've seen what happens when they don't breathe, and it makes me all the more aware of how lucky we are.
I'm thankful for diapers - though I'll be more thankful for potty training - their bodies work they way they should on this front, and that makes life much less complicated. Not everyone has that benefit.
I'm thankful for my children's health. I know they're not as healthy as some, and there will likely always be issues on that front, but things could be so much worse.
I'm thankful for a job that provides insurance that provides for their needs, even when I don't really feel like it meets my needs.
I'm thankful for a spouse who is involved in my children's care. I'm thankful for friends and family who accept my children as they are.
I'm thankful for loving and competent care givers - nurses, teachers, aides, and more - who make working and sleeping a little more possible.
But mostly, I'm thankful for smiles and hugs and tickle fights and bicycle rides. I'm thankful for morning snuggles and bedtime snuggles and singing and laughing.
Tuesday, October 8, 2013
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have written about their families' policies on screen time.
More than most families, technology is a central facet of our lives.
Machines that breathe when they can't.
Machines to suck out the mucous when a child can't blow their nose or cough it up.
Pumps to feed children through tubes in their bellies.
Machines to keep track of oxygen saturations and heart rate.
Visit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants (list will be updated throughout the day on October 8):
- Has Technology Taken Away Childhood? — Jennifer at Hybrid Rasta Mama worries that technology is intruding on the basic premise of childhood - active play in all forms! Join her as she takes a brief look at how play has changed as technology becomes more integrated into the daily lives of our children.
- Fostering a Healthy Relationship with Technology — Jenn at Adventures Down Under describes her children's love of screen time and how her family implements their philosophy and policies on technology.
- Kids Chores for Tech Privileges — Crunchy Con Mommy shares how tying chore completion to iPad privileges worked in her house to limit screen time and inspire voluntary room cleaning!
- Screens — Without the benefit of her own experience, sustainablemum explains her family's use of technology in their home.
- Screen Time - The Battle of Ideologies — Laura from Laura's Blog explains why she is a mom who prioritizes outdoor natural play for her kids but also lets them have ample screen time.
- The Day My iPhone Died — Revolution Momma at Raising a Revolution questions the role technology plays in her life when she is devastated after losing her phone's picture collection from her daughter's first year.
- Finding our Technological Balance — Meegs at A New Day talks about how she finds balance between wanting her daughter to enjoy all the amazing technology available to her, without it overwhelming the natural parenting she's striving for.
- Raising kids who love TV — Lauren at Hobo Mama sometimes fears what children who love screentime will grow up to be … until she realizes they'll be just like her.
- No Limits on Screen Time? Is that Natural? — Susan at Together Walking shares misconceptions and benefits of having no limits on technology and screen time in their home.
- Screen Time — Jorje of Momma Jorje shares what is currently working (and what hasn't) regarding screen time in her household.
- Positive Use of Technology with Kids — Deb Chitwood at Living Montessori Now tells about her family's experiences with early technology, shares helpful resources from around the blogosphere, and speculates on what she'd do as a parent with young children today.
- why i will never quit you, TV — How Emma of Your Fonder Heart came to terms with the fact that screen time is happening, and what balance looks like between real and virtual life for both her toddler AND herself.
- Technology Speaks — Janet at Our Little Acorn finds many uses for technology - including giving her child a voice.
- 5 Ways to Extend Children's Screen Time into Creative Learning Opportunities — Looking for a way to balance screen time with other fun learning experiences? Dionna at Code Name: Mama shares 5 fun ways to take your child's love of favorite shows or video games and turn them into creative educational activities.
- What parents can learn about technology from teachers — Douglas Blane at Friendly Encounters discusses how technology in schools enhances children's learning, and where to find out more.
- 5 Tips for a Peaceful Home — Megan of the Boho Mama and author at Natural Parents Network shares her favorite 5 tips for creating a peaceful home environment.
- Technology and Natural Learning — Kerry at City Kids Homeschooling writes about the importance of technology as a tool for natural, self-directed learning.
- Babies and Technology — Jana Falls shares how her family has coped, changed their use of, relied on, and stopped using various forms of technology since their little man arrived on the scene
- Kids and Technology — Rosemary at Rosmarinus Officinalis talks about the benefits of using technology with her preschooler, and includes a few of their favorite resources.
- Using Technology to Your Advantage: Helping Children Find Balance — At Living Peacefully with Children, Mandy discusses how technology can be used or abused and gives a few tips to help children learn balance.
Tuesday, September 24, 2013
Monday, September 2, 2013
We know too much.
We know that every surgery has risks, and we know people who've seen them first hand.
We know that surgery is sometimes (more often than we'd like) our only option.
We know that an ominous silence after someone posts "heading to the hospital" isn't good.
We know when a friend says they're taking their child to the emergency room whether it's likely to be a short stay or not, based on the issues presented.
We know, because we know them and their child, whether that stay might mean not coming home at all.
We know that those blog posts with cryptic titles usually mean nothing good.
We know which ER to go to in our area, based on what we need and what doctor our children need to see.
We know that as a group, moms and dads of children with medical issues are often smarter than doctors.
We know more than the EMTs who come when we call 911.
We know that the nurses who work in our homes are a blessing and a curse.
We know that hospital nurses likely don't know much about some of the things that are our daily lives.
We know what many diseases entail, even if our children don't have them, and we weep with friends when their children are diagnosed, because we know how the story will end.
We know that doctors are people too - they're not gods, they make mistakes, and they don't know everything.
Friday, August 16, 2013
Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?
We fail at that regularly - I know, because one of our new nurses is Pagan, and we know because she decided to ask based on a few things left out here and there.
I mean...it's really really really nice to have a Pagan nurse.
Really nice. A relief.
For the first time ever, we went to Pagan Pride Day as a family (and boy did we need the extra set of hands!) - something we've never attempted before, because we were afraid to ask any of our obviously Christian nurses to go. We don't have to watch every word out of our mouths. And she's a really good nurse. Maybe not as experienced as some (she's younger than I am), but smart, on her toes, picks up after herself (a big pet peeve here of late), pays attention to Leaf's subtle signals, and has managed to gain Leaf's trust in only 5 shifts - that's a big deal.
And it's a nice thing for her too. If you can imagine working for families all the time who honestly believe that anyone who believes what you do is evil, you can guess how some of these have gone for her, even without her coming out of the broom closet.
Of course, we also know that the agency (and many current and former nurses) think we're odd. I think we're odd, at least compared to most people I know, so it's not a shock, but if that's what they think based on our carefully cleaned up home.....goodness knows what they'd think if we didn't.
Our favorite nurse is out on medical leave. We've oriented 3 new nurses in the last 6 weeks and we still have open shifts. More new nurses to come....more opportunities to scare people away.
Friday, August 2, 2013
Earlier this week, sitting in the waiting room for the speech therapist, Acorn got out his communication device, and from the main screen, he hit the following buttons:
Quick Talk (a page with lots of sentence starters)
"I want to eat chips"
A whole sentence. By himself.
When I told him we didn't have any, he said it again - several times.
Eventually, we went back to our speech therapy session and he said the same thing to the therapist. She found him some cheese puffs, and then asked for more, saying both "more" and "I want that" with his device, and with sign language, multiple times.
Hooray for breakthroughs!
Friday, July 26, 2013
At our worst with Acorn, during the one point in his life that there really was fear that he would not survive, I asked a good friend what we would do if the doctors couldn't "fix" him. The friend told me that I shouldn't think in terms of Acorn being broken - sure, not everything was quite up to spec, but if I started thinking that way, I wouldn't be able to celebrate his successes.
And that's true. Over time, I've come to see both Acorn and Leaf as perfect - just like every other child is perfect, no matter what challenges they face. There may be parts of them that don't work the same as most people.....but all of us have things that make us unique.
Even so, we're still perfect. They're still perfect. Their special needs and disabilities don't take away from that perfection.
Friday, July 19, 2013
I've talked before about the challenges we face when it comes to caregivers. Clearly, though, I'm not the only person who has wondered about your run of the mill daycare and our kids.
Around here, a fairly sizeable percentage of daycares and preschools are run by Christian churches. It's an obvious choice for them - if they're big enough to have classrooms for their Sunday School programs, they've got those rooms sitting largely unused all week.
Our current daycare for Acorn did ask about our faith - the owner ran across one of my blogs. But she was respectful, and it has never come up again. Our previous daycare, however, told me at one point that they "do a Christmas program, with traditional songs and stuff" and that they planned to continue to do so, because "we don't have anyone here who objects." Which I guess is code for "everyone here is nominally Christian or afraid to say otherwise."
But that does leave me wondering - in some areas, it's likely that church-based centers are the only option (or the only affordable option, which is a totally different post for another day). Even all of the small centers I interviewed that advertised themselves as being "green" or "organic" turned out to be heavily Christian based - some even using pre-packaged Christian curriculums, even though that wasn't mentioned in their ads at all. So even here, with one of the largest Muslim populations outside of the Middle East, along with sizeable populations from all corners of the globe, daycares that aren't Christian are hard to find, and are so much the norm that they don't see a need to mention it.
Actually...it's somewhat interesting that both our local Hindu temple and one of our Mosques here in our small suburb have Montessori based preschools....
So...what should daycare providers know about our kids? Mine aren't likely to say anything that might cause a stir anytime soon, but I bet yours talk about holidays and witches and that sort of thing once in a while.
Tuesday, July 16, 2013
Have you read any of the stories in the news going on and on about how awful and disgusting the process is in relation to the Guantanamo Bay situation?
Do you remember Kathie Lee and Hoda talking about the feeding tube diet fad last year (fast forward to about 5:11 into the video)?
Feeding tubes are a useful tool when used appropriately. NG tubes *can* be traumatic to put in. But the media keeps leaving out one important thing: many adults and children (like mine) are alive because of feeding tubes.
I really wish the media could separate "feeding tube" and "reason it's being used."
Then again, that's true of a lot of things in the media these days....
Monday, July 15, 2013
Friday, July 12, 2013
It's been a tough evening of pain management and distraction (and over an hour spent tracking down a specific med he needs post-surgery). Acorn has screamed himself hoarse today, and is far too jumpy for my comfort.
And it followed a long morning of not eating, being the next-to-last case in the OR, and trying to get my own fasting blood work done after he went back, but them taking over an hour of what turned out to be a 90 minute surgery.
We're hoping tomorrow (today by the time you read this) will be better.
A funny thing happened in the pre-op room. We got several staff members that didn't know us, and one asked if this was Acorn's first procedure. We kind of laughed and said no. And then they wanted to know what else he'd had done. A quick run through puts this at either 14 or 15 procedures total....and he only just turned 5 a month ago.
For those of you with kids with medical issues, you'll understand when I say that's not really a lot of procedures. After all, another friend's daughter had a procedure done last week that puts them in the mid-70s, count wise, and her child is only 7.
On the other hand, those of you more familiar with typical kids might be thinking this is an outrageous number of procedures - I remember one mother I know getting upset that her 3 year old was going to have tubes put in her ears, and it would be her first surgery ever, and she was just too young for that sort of thing. That same week Leaf, at 8 months, was having her 4th procedure, and that didn't count the month that she spent sedated.
It's all about perspective, you know?
Some days, it's easier to find that perspective than others - and I'll be the first to tell you that compassion for others is easier on days when you find that perspective. I'm guessing that it's easier to find perspective on days when you don't have a sobbing child, but right now, even the fact that I have to say that suggests to me that there are some people (on both sides of the special needs divide) who will never find it.
Wednesday, July 3, 2013
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.
Saturday, June 15, 2013
Acorn's final few days of special ed preschool were this week. We've had lots to organize, including making sure he'll have access to his communication device through the summer - a recent trial shows that while he uses PECS at school willingly, he flat out refuses to use the pictures at home. I guess the fact that he uses them at school is a testament to the communication difficulties he's had with them all year - as soon as they gave him something that they actually wanted him to use, he took off in telling them his needs.
I've been working with several others on a Pagan set of PECS images. I'll have to figure out where we put them on Acorn's device, but they will make having even a basic discussion with him about Sabbats and altars much more useful.
After last year's experience, we're skipping ESY. Knowing how many families fight for their summer hours, it makes me a little skittish about the whole thing, but it's just not a good setup for Acorn. It's a short day, and only a couple days a week. Instead he can hang out at daycare (who is really geeked about using his communication device), and play in the sprinklers and make friends.
Leaf is finally walking, so we're suddenly finding that she's into everything - she's tall enough to see over the edge of the dining room table, so not even the table is a safe place to put things.
And while we're again missing what I'm told is an awesome local Pagan festival this weekend, we're just not in a position to swing it with Leaf's gear this year. Maybe next year...maybe we can do a day trip next year. It's hard to get out and be a part of the community this way, but we will have plenty of time in future years.
Monday, May 20, 2013
Leaf will be 2 in less than a week. Breakfast this morning was a mashed banana in yogurt...and it took over an hour, 3 bibs, and 3 HMEs (a little barrel that goes over the trach and keeps moisture in - it's an artificial nose of sorts) to get through the meal.
Off and on, Acorn decides that instead of food, he'd prefer a carton of his high calorie formula. It's supposed to only be a supplement, and he gets one every morning for sure, but as short as he usually is on calories, it's not like we can say no. As it is, his diet is pretty limited - he rarely eats meats, and mostly sticks to carbs and veggies.
We hear from people every once in a while that kids won't starve themselves - that eventually they'll eat. Clearly those people have never met kids like mine, or kids who can't eat orally.
Friday, May 3, 2013
You hear less about auditory processing, but just as the other senses can be disjointed and dysfunctional, so to can the ability to process things a person hears.
Our current working hypothesis is that this is part of Acorn's difficulties. Especially since he follows directions well when they're given in sign language (visually) as opposed to verbally. All of our private therapists (OT, speech, psychologist) believe this, and while the school is not so keen on the idea, they agree that there are times his hearing seems off, and that directions given in sign language or using PECS or a communication device are easier for him to follow.
We've known for a long while that something was off in his hearing (though repeated hearing tests have shown normal hearing). As a small baby, his reaction to many toys that made noise was complete and utter terror. As he's grown, that's improved, but things like lawn mowers and vacuums still bother him. There are times where things you say don't seem to make sense to him, even though the same words made sense the day before.
The most amusing - or maybe most embarrassing - outcome of this is actually fairly common in kids with SPD.. More often than not, if you ask him to put on a specific article of clothing, he takes off a different article of clothing. So when the occupational therapist asks him to put on his shoes, he sometimes tries to take off his pants. She says it's a daily occurrence there, and everyone expects it, so at least we feel less crazy when it happens at home.
All of this background is so that you understand why what I'm about to relay happened, and why it was so scary for us.
Acorn does best with a very consistent schedule, because it's easier for him to know what to expect. Explaining changes to the schedule is hard, because he doesn't always process what's being said.
We needed to make up some swimming lessons he missed due to illness, and so we were going to swimming at a different time than usual, on a different day than usual.
We all told him that he and I were getting in the truck to go swimming. Instead of running for the truck, he waved "bye" to me. When prompted again, he came running, but still didn't really get it. I went and opened the truck door, and told him to come and get in, but he walked to the car, hoping to get in there instead.
I reminded him that we were taking the truck, and asked him to come over and climb into his car seat. And then I opened my door to put my bottle of tea into the cup holder.
When I turned around, he was no where in sight.
In fact, he was not in the street, not between the cars, not in front of the cars......he had vanished.
Instantly, I started to panic, though I knew he couldn't have gone far, and anyplace in the street would have still been in my line of sight (we have a corner lot, giving a lot of street to look for him in). Since he hadn't come past me, he had to be somewhere down the side of the house.
I started around the side of the house, since that wasn't in my direct line of sight, and as I walked farther from the cars, I could see him hanging out at the corner of the deck. He looked at me somewhat confused, wondering why I was calling for him.
Relieved, and also mad, I picked him up and carried him back to the truck, in hopes that we wouldn't be too late for swimming....and with me wondering again how many times this sort of thing is going to happen. He's only escaped the house once, but he's since learned to take the plastic door knob guard off the door, so it's likely only a matter of time before he escapes again. We already have rules that if we're playing outside and he runs into the street, we go in immediately. He's bolted in parking lots.
But so far, there's no real way to get it across to him that running off like this isn't a good idea.
Wednesday, May 1, 2013
That same sentiment goes around special needs communities fairly frequently too, as an admonition to parents to take care of themselves. And honestly, that's been bothering me off and on for a while now.
Maybe for some people it makes sense. Not to dismiss the wide variety of special needs and medical issues and disabilities out there, but I'm sure that for some families, it really won't kill anyone if parents take a night off, hire a sitter, and go to dinner, even if it takes a lot to find a sitter that will keep their kids.
At our house, however....sitters are just not going to cut it. We need someone trained to care for Leaf - trach trained and reasonably good at assessing her respiratory status. We really need someone familiar with sign language for Acorn. And to find someone who can do both kids at the same time is clearly just not going to happen (even our primary nurse, who has cared for both of them individually over the years, has said they're too much for one person, which makes me wonder a bit about the days my husband or I have both of them by ourselves).
Besides...here, oxygen masks are real, not just a metaphor. If we don't put a real oxygen mask on a child when they need it because we're trying to put on our metaphoric mask, bad things happen. And that's not happening if I have any control over it.
Monday, April 29, 2013
One of our big concerns is lunch - he's picky, and it's an all day kindergarten program, so we'll have to work something out, lunch wise. Though the staff at his new school are quick to assure us that many kindergarteners can't figure out their lunchboxes the first month or so, Acorn's fine motor skills are a little behind, and that makes it an even bigger challenge for him.
|My lunch earlier this week - sandwich, salad, cookies|
Being able to open his lunch box all by himself will be a huge step towards independence.
Monday, April 8, 2013
On the other hand.....it's expensive, and of mixed quality.
When Acorn and Leaf had RSV earlier this year, we were trading off who was at the hospital and who was elsewhere; the person coming in to switch shifts brought in food. K brought us dinner a couple nights too. We had a similar pattern in the fall of 2011 when both were hospitalized, just before Leaf got her trach, and the weekends we stayed at the bigger hospital with her, we brought in food in much the same way. This winter's stay made me think, "you know, we ought to write up a plan for what we're going to do about food when we're stuck here so that we can just tell someone to go shopping or go raid our pantry, and bring back X, Y, and Z."
When Acorn had his tonsils out, we almost ended up spending the night. The doctor wanted us to stay longer and make sure he was going to drink well enough; the nurses were panicky about his sats dropping very low and the amount of oxygen he needed to come back up to normal. In the end, we went home on oxygen, because the doctor knew us well enough to know we would be fine at home, but that was long after we'd bought lunch and eaten in the recovery room waiting for transport to the floor, and not before we'd started making plans for someone to go retrieve dinner.
So, that had me thinking again about what an emergency food run would look like for a hospital stay, and I figured I'd share with you all.
First, of the three hospitals we have doctors at, we only will allow for inpatient stays at two of them. Of those two, all but a few areas have a bedside cube fridge. They do not have vending machines in easy reach of the rooms - one has them on the same floor but out in the lobby, and the other has them on some floors out in the entry, but not on all. Too far to walk unless a child is napping (and for us to be inpatient usually involves a child who's not well enough to wander the halls without a mask, and of course mine won't wear masks).
Both hospitals have microwaves available on the floor. And silverware and plates, if need be, though I think it may be worth setting up a stash of plates and plastic ware here at the house for someone to grab. They also have cups, straws, and ice readily available. Both have coffee and milk easily available too.
Acorn is pretty picky when it comes to eating, so if he's inpatient, we've found that it's worth packing in some things he will eat - multigrain or honey nut cheerios for example. His Boost is another good choice - he'll drink it under almost any circumstances, and at 360 calories and 1/4 of his daily vitamin and mineral needs per juice box, it's a reasonable substitute for food when he's not interested in eating.
Leaf subsists mostly on purees and formula. We know the closer hospital doesn't carry her formula, so we need to pack that if she's inpatient.
That leaves food for us adults.
For breakfast, something easy, like muffins or bagels is probably the best choice. They store and transport well, and we can eat them whenever we're up.
For everything else, our best so far has been sandwiches. A loaf of bread, some cheese, and some lunchmeat will last a fair number of meals. Chips of some sort, individual sized fruit cups, and some soda make the second most useful batch of foodstuffs.
For slightly longer stays, prewashed lettuce, tomatoes (and a good knife), croutons and salad dressing, grapes, and other snackable foods make a good addition. Lettuce and tomatoes can go on sandwiches or become salads. Fresh fruits and nuts make good snacks too.
And in the end, we can eat fairly healthy all from the confines of a hospital room, without breaking the bank.
Tuesday, April 2, 2013
Yeah....he wants nothing to do with it. He touched it, made a face, and shook his hands until it all flew off his hand.
So much for that idea.....
Monday, April 1, 2013
Of course, I don't actually have a "right" pot for this - my bigger stockpot is about 4 times the size of this one. I used to have a perfect pot, but it scorched, and now burns anything tomato based, and rather than risk people ruining dinner again, I retired it. It's ok, it cooks down as the leafy things cook.
There is a lot in tonight's dinner that I never ate as a kid - that we would never have been allowed to even buy or cook when I was growing up, because my dad is a very picky eater - he makes my kids look like great eaters :)
This has been my go-to for using up veggies before they went bad, but now that we're not getting a big box every week, I had to buy stuff specifically for this.
"Stuff in a Pot"
1 (or more) packages of smoked sausage. I like kielbasa for this.
Lots of random veggies
garlic - we have a jar of minced garlic, so for this pot I used a big spoonful, probably 1/4 cup. Use less if you don't like garlic, or more if you're making a bigger pot
pepper (1 T or more if you make a bigger pot)
basil (1 T or more if you make a bigger pot)
Tonight, we have a bundle of Swiss chard, a leek, most of an onion, most of a bell pepper, a half dozen small redskin potatoes, the leftovers of a bag of shredded cabbage, and 3 carrots. We've used eggplant, apples, grean beans, peapods, broccoli, cauliflower, squash, sweet potatoes, and probably some other things before too.
Chop into bite sized pieces, and cook for 30-60 minutes until everything seems cooked. Serve with warm crusty bread or garlic bread.
Thursday, March 28, 2013
We always knew that surgery would eventually be harder as he got bigger and older and more aware and more able to communicate....and apparently we're there.
The morning started with him asking for milk - not such a big deal anymore, because he can do that easily in sign language. Only this time, I had to say no. No, I'm sorry, no milk this morning.
Which he followed with "milk please. "
Again, "No, I'm sorry, no milk this morning."
"Hungry. Milk please." as he led me into the bathroom, where we keep the cooler that usually has his special high calorie "milk" for the morning.
And so I said, "no milk this morning, but we can go watch a movie...."
He remembers everything he sees. The toys in the surgical waiting area were great....but walking back to pre-op, the complaints started. And yet for all the complaining....he willingly went back with the anesthesiologist without any Versed. Stickers were enough of a bribe for him to go.
Everything went well. His hearing is fine (which means that the issues we see really are processing issues, not physical issues). In the recovery room, though, his sats dropped into the 70s as he started to rouse, in part because he wasn't swallowing secretions....and in part because he's always needed a little more O2 after surgery, and having been sick all winter, he really wasn't starting out at baseline.
So, we're hanging out in a room on the floor for now, waiting to see if we can get him off the O2 before the doc leaves at 4:30, arguing with people who want to make him more comfortable...but want to check his vitals first, which just sets him off in a tizzy again. As long as he can drink his "milk" and watch his favorite movies, he's in a decent mood.
But still....this has been both more and less difficult than any of us anticipated......
Monday, March 25, 2013
For the last couple of years, we've had random boxes of fruits and veggies - first, a summer with a CSA, and then a local company that delivered a box of stuff to the door every week.
It was a beautiful thing - cut my shopping time dramatically, mostly saved us money (the CSA not so much, but the service had great prices and we split our box with a friend), and it encouraged eating things that weren't typical staples around here.
Unfortunately, the delivery service is going out of business, which means that I have to figure out what to buy again, and buy the things we're going to eat for the week, rather than planning what to eat based on what shows up on the doorstep.
Which, given my limited shopping availability, means I really need to plan things out ahead of time.
And that's not a bad thing - we're debating kindergarten or a young 5's program for my son next year, and kindergarten here is an all day event. Since he is a really picky eater, I'll be packing his lunches daily I suspect, so getting on the planning bandwagon now is good practice.
One of our plans last year was a bigger freezer. It didn't happen (too much to do, not enough time), but it will have to be done soon to make this manageable in any reasonable sense.
So...every weekend I'll be writing up our meal plan for the week. I'm subscribed to a meal planning service, 5 Dinners in 1 Hour, and I'm going to be looking at how to use her system, which is sort of a once-a-week prep setup. I got the "clean eating" version, which is ideal for us, but not everything on her meal plans each week is something we'll eat, so I'm thinking I'll take some meals from a couple different weeks. Also, she depends a lot on frozen veggies, and that's going to be a hard switch for us, given our history recently of eating almost exclusively fresh veggies (not all - we got overloaded on corn on the cob, so we threw those in the freezer, and can now have lovely roasted corn year round).
So...here's to a new future of better planning (I hope).
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Monday, March 18, 2013
Interesting fact: neither of my kids has ever actually eaten birthday cake, though they've tasted it.
This weekend was my birthday, and I like red velvet cake.
I assume she got this recipe from somewhere, but the card in her recipe box yielded no clues.
Red Velvet Cake
1 tsp white vinegar
1 tsp baking soda
1/2 cup shortening
1 1/2 cup sugar
2 oz red food coloring
2 tsp cocoa powder (not hot chocolate powder)
1 tsp vanilla
1 tsp salt
1 cup buttermilk
2 1/4 cup flour
Heat oven to 350. Traditionally, this is made as a layer cake, so grease and flour 2 round cake pans, or one 9x13 pan.
Mix vinegar and baking soda in a small cup and set aside.
Cream shortening and sugar. Add eggs.
Make a paste of cocoa and 1 oz of food coloring (this is a really messy step; I never do it). Add to creamed mixture. Add remaining food coloring to mixture and mix.
Add vanilla and salt.
Add buttermilk and flour a little at a time, alternating. Mix well.
Pour into pan(s) and bake 30 minutes. Be really watchful - this dries out quickly if you over bake.
The traditional frosting for this cake is listed below - usually, you split each of those round cakes into 2 layers, so you get 4 layers. The frosting recipe is designed for that number of layers, so I'm including alternate measurements to make a smaller amount more appropriate for 2 layers if you're so inclined.
For what it's worth, I'm not a fan of this and usually use decorator icing or a can of plain vanilla frosting.
1 1/2 cup milk (1 cup)
1/2 cup flour (1/3 cup)
1 1/2 cup sugar (1 cup)
1 1/2 cup margarine (or shortening or butter) (1 cup)
1 tablespoon vanilla (1 1/2 teaspoons)
Mix milk and flour in saucepan. cook and stir over medium heat until thick. Cool completely (this is important).
Cream sugar, margarine, and vanilla. When fluffy add room temperature cooked milk mix slowly, beating as you go. Beat until fully incorporated and fluffy.
And there you have it. Bright red, not too sweet, and just the right texture.
Tuesday, March 12, 2013
Welcome to the March 2013 Carnival of Natural Parenting: Tough Conversations
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have spoken up about how they discuss complex topics with their children. Please read to the end to find a list of links to the other carnival participants.
Visit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be updated by afternoon March 12 with all the carnival links.)
- A Difficult Conversation — Kellie at Our Mindful Life is keeping her mouth shut about a difficult topic.
- Discussing Sexuality and Objectification With Your Child — At Authentic Parenting, Laura is puzzled at how to discuss sexuality and objectification with her 4-year-old.
- Tough Conversations — Kadiera at Our Little Acorn knows there are difficult topics to work through with her children in the future, but right now, every conversation is a challenge with a nonverbal child.
- Real Talk — Jennifer at Hybrid Rasta Mama explains why there are no conversation topics that are off limits with her daughter, and how she ensures that tough conversations are approached in a developmentally appropriate manner.
- From blow jobs to boob jobs and lots of sex inbetween — Mrs Green talks candidly about boob jobs and blow jobs…
- When Together Doesn't Work — Ashley at Domestic Chaos discusses the various conversations her family has had in the early stages of separation.
- Talking To Children About Death — Luschka at Diary of a First Child is currently dealing with the terminal illness of her mother. In this post she shares how she's explained it to her toddler, and some of the things she's learned along the way.
- Teaching 9-1-1 To Kids — Kerry at City Kids Homeschooling talks about the importance of using practical, age-appropriate emergency scenarios as a springboard for 9-1-1 conversations.
- Preschool Peer Pressure — Lactating Girl struggles to explain to her preschooler why friends sometimes aren't so friendly.
- Frank Talk — Rosemary at Rosmarinus Officinalis unpacks a few conversations about sexuality that she's had with her 2-year-old daughter, and her motivation for having so many frank discussions.
- When simple becomes tough — A natural mum manages oppositional defiance in a toddler at Ursula Ciller's Blog.
- How Babies are Born: a conversation with my daughter — Justine at The Lone Home Ranger tries to expand her daughter's horizons while treading lightly through the waters of pre-K social order.
- Difficult Questions & Lies: 4 Reasons to Tell The Truth — Ariadne of Positive Parenting Connection shares the potential impact that telling lies instead of taking the time to answer difficult questions can have on the parent-child relationship.
- Parenting Challenges--when someone dies — Survivor at Surviving Mexico writes about talking to her child about death and the cultural challenges involved in living in a predominantly Catholic nation.
- Daddy Died — Breaking the news to your children that their father passed away is tough. Erica at ChildOrganics shares her story.
- Openness — sustainablemum prepares herself for the day when she has to tell her children that a close relative has died.
- Embracing Individuality — At Living Peacefully with Children, Mandy addressed a difficult question in public with directness and honesty.
- Making the scary or different okay — Although she tries to listen more than she talks about tough topics, Jessica Claire of Crunchy-Chewy Mama also values discussing them with her children to soften the blow they might cause when they hit closer to home.
- Talking to My Child About Going Gluten Free — When Dionna at Code Name: Mama concluded that her family would benefit from eliminating gluten from their diet, she came up with a plan to persuade her gluten-loving son to find peace with the change. This is how they turned the transition to a gluten-free lifestyle into an adventure rather than a hardship.
- How Does Your Family Explain Differences and Approach Diversity? — How do you and your family approach diversity? Gretchen of That Mama Gretchen shares her thoughts at Natural Parents Network and would like to hear from readers.
- Discussing Difficult Topics with Kids: What’s Worked for Me — Deb Chitwood at Living Montessori Now shares parenting practices that enabled discussions of difficult topics with her (now-adult) children to be positive experiences.
- Tough Conversations — Get some pointers from Jorje of Momma Jorje on important factors to keep in mind when broaching tough topics with kids.
- Protect your kids from sneaky people — Lauren at Hobo Mama has cautioned her son against trusting people who'd want to hurt him — and hopes the lessons have sunk in.
- Mommy, What Does the Bible Say? — Amy at Me, Mothering, and Making it All Work works through how to answer a question from her 4-year-old that doesn't have a simple answer.
- When All You Want for Them is Love: Adoption, Abandonment, and Honoring the Truth — Melissa at White Noise talks about balancing truth and love when telling her son his adoption story.
Monday, March 11, 2013
It started out as quiche lorraine, but QL doesn't have garlic. Or cheddar. Or parmesan. Or nearly as much bacon as I added, because this was a, "huh. I have leftover bacon. That's unheard of..." kind of a meal. And really, cooking didn't go too badly, once my spouse realized that keeping an eye on the kids was a full contact sport.
I've gotten good at handling grandma's pie crust recipe, and had quite a bit of dough left over, so I made this turnover type thing, stuffed with cherry preserves. Of course, the cherries bubbled out all over the pan, which will be a huge pain to clean....but that's why I have a housekeeper, because we can't keep up with the dishes as it is. (Elaine, if you're reading this, we love you, and we love having you back!)
It turns out that I forgot that I don't really like quiche. Every time I make it I think, "with that list of ingredients it has to be tasty" and then I'm disappointed. Oh well. The husband can have it for his lunch this week.
Meanwhile, I took the other half of the onion that went into the quiche (it was a *big* onion), and put that and some chicken breasts and about 4 heads of garlic (3 fresh that needed to be used up, peeled and sliced, and some pre-chopped-ina-jar) in the crock pot for tomorrow. Tonight I'll chop some root veggies, and tomorrow during my 40 minutes for lunch between appointments I'll throw them in the crockpot with the garlic chicken so that dinner will be ready when we get back from speech therapy. Multi-tasking is a wonderful thing.
Wednesday, March 6, 2013
I stopped by the merchant room there on that Friday on my way home from work. Having run a fairly large metaphysical wholesale company, it's no longer the amazing wonderland of goodies I used to think it was, but there's still a lot of good stuff there.
Lately I wander through events like this, thinking not about what I might find for myself (though I do usually hope to see something that will catch my eye), but about what I might bring home to enchant the children. And usually, there's not much that they might find intriguing - a few little stone carvings maybe, though I usually then envision them flying across the room and shattering....maybe those would be better when they're a little older.
So then I have to wonder. What Pagan-themed things would smaller children actually like?
Christian book stores have things related to Bible stories - like Noah's Ark toys. And they have lots of songs and DVDs with Christian themes. It's easy to find Christian themed coloring books and craft kits and lots of other random normal toys with crosses on them.
But we don't really have anything as ubiquitous as a cross, or nearly as many sayings to put on things. And I often wonder if kids really play with all those things, or if they just get them from well meaning family members.
So...what do you think? What sorts of toys or accessories do you think kids would like?
Monday, March 4, 2013
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.
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Friday, March 1, 2013
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.
Wednesday, February 13, 2013
One of the ways we're doing this is with an electronic communication device - a device with a synthesized voice and buttons to touch for each word that you want to say (sort of like the device used by physicist Stephen Hawking, but more updated, and more appropriate for a child to use).
His device comes pre-loaded with some basic vocabulary, and it's expected that we'll add words related to things he does every day and things he'd like to talk about. There are several thousand words available to us already using a picture symbol set called PCS (picture communication symbols) developed by a company called Mayer-Johnson, but we can also add our own pictures for things that they don't cover.
As you can probably guess, there are lots of symbols in this set for Christians (I've seen church, Jesus, nativity, and more). There are menorahs and a symbol for Hanukkah. There are symbols for dozens of holidays. But no Pagan ones of any sort.
While I could print out lots of different pictures from the internet, we'd really like to keep the images we're using on Alex's device similar in style to the existing images to minimize confusion...and to minimize drama with the school, who also gets access to add, change, and delete things on the device.
So...to get to the point. I'm looking for 2 things:
1. an artist or two who can mimic the style of the PCS images, such as the ones found at http://www.childrenwithspecialneeds.com/index.php/downloads.html - while I'd love someone who would volunteer, I know that's not very realistic, so I'm willing to negotiate payment for the initial images that we'd like for our own use. If I end up paying someone on my own, I will make the images available for a small fee for others to use. If we can crowd fund or find volunteers, I will make images available for free for others.
2. others who are interested in developing a word & picture list. Our family is nominally Wiccan, so that's where I'm starting on words we'll eventually need, but I'd like to be able to introduce other Pagan faiths & key concepts as well.
Interested? I've started a community on Google to discuss vocabulary and strategies. https://plus.google.com/communities/104217928623812417364
Tuesday, February 12, 2013
|Inital sketches for male and female|
|first Goddess body in core roving|
|One side, in blues and greens|
|filling in the other side|
My goals for this project include Gaia, Green Man, Father Sun, and Mother Moon. Beyond that, we'll see....depends on how the altar works out in practice, and how long this takes me.
Friday, February 8, 2013
It's like going to the ER (which we've done 4 times in the last 6 weeks) - you walk in the front door, and they take some time to figure out how bad your situation is so they can figure out whether to take you right back to a bed and get busy at keeping you alive, or whether you can wait for a bit while they take care of those more urgent cases.
I should note that having a trach moves you much closer to the head of the line, no matter what's actually wrong - see that last post about it making people nervous. And if you walk into an ER with someone with a trach who is wheezing? Yeah....straight back to a bed, even if it takes them hours to actually get you out of the ER and into the regular hospital.
When you're dealing with medically fragile children, the power balance shifts - sometimes it's not enough to put one adult on one child and hope for the best - sometimes a child's care requires 2 or even 3 people to manage things.
And in those cases, your heart breaks for the choice, but you do what you must do.
So it is at our house this past week. When we just had one child, we could fairly easily trade off time at the hospital with Acorn, while the other parent worked or slept or whatever. But when both of our children were in the hospital? It's not so easy.
Acorn was sick, but not sick enough for the ICU. The regular peds floor is a scary place for us - nurses fully expect parents to be there and to do basically everything; they have only the bare minimum of staff to keep an eye on things. Acorn is not the kind of kid who can be trusted to stay out of trouble, even when he's sick, for more than about 10 minutes without supervision.
Leaf was sick too - not sick enough for the ICU, but her ventilator requires her to be there. The ICU has one nurse for every 2 children, lots of monitors, and in Leaf's case, respiratory therapists checking in pretty regularly as they monitor her, switching her from ventilator to trach collar and back again.
And in the grand scheme of things, for all that Leaf is afraid of strangers these days, leaving her alone in the PICU was the best choice - safe, contained, and well cared for. I needed sleep desperately after the all night wait in the ER. Acorn needed supervision. My husband needed to go in to work today for a meeting. And thought it broke my heart every time we left her there, we knew she was in good hands.
On the plus side, Acorn is now home (though with oxygen and nebulizers). On the minus side, that means that if one of us is working, there's only one of us to manage 2 children who are in 2 different places. Again, painful. But necessary for the moment. We'll all be home together soon.