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.
Pagan parenting, special needs style - one medically complex preschooler, one medically fragile toddler, lots of chaos.
Showing posts with label insanity. Show all posts
Showing posts with label insanity. Show all posts
Monday, August 15, 2016
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.
Labels:
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breastfeeding,
diapers,
insanity,
leaf,
life,
medical,
mental health,
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Saturday, November 27, 2010
Winter can bite me
Dear blog, it has been 11 days since my last post. Before that it was 7, and then 5 (though that was just a little blog hop post) and before that 7.
I could blame it on a lot of different things, but the real root cause is that it's winter, and this is Michgan, land of not much sun in the sunny part of the year, and no sun at all this time of year, when it's just becomming light when I leave for work, and nearly dark when I leave there for home.
The truth of the matter is, I'm struggling, mood wise, and it shows in my blogging, or lack thereof.
It's not like this is a new thing. It's been ongoing, to varying degrees, for years. We've replaced most of the lights in the house with full spectrum bulbs, I've increased my vitamins, I've learned to meditate. I've even taken antidepressants at various points. Some years have been bad. Some years, like the year Acorn was born, I was already so overwhelmed that the seasonal changes were completely unnoticed.
And maybe that's part of the problem too. I've been stressed lately...but not in the same sense that I was back then. This is more a death by a thousand cuts kind of stress, and I'm just not up to handling that sort of thing these days, because there are so many more important things to deal with. We're making plans for next year - plans for life without a trach, we hope. And that's a huge adjustment for all of us.
It's good, but stressful, and the fact that there are so many good things going on right now just makes the depressed mood stick out more.
I could blame it on a lot of different things, but the real root cause is that it's winter, and this is Michgan, land of not much sun in the sunny part of the year, and no sun at all this time of year, when it's just becomming light when I leave for work, and nearly dark when I leave there for home.
The truth of the matter is, I'm struggling, mood wise, and it shows in my blogging, or lack thereof.
It's not like this is a new thing. It's been ongoing, to varying degrees, for years. We've replaced most of the lights in the house with full spectrum bulbs, I've increased my vitamins, I've learned to meditate. I've even taken antidepressants at various points. Some years have been bad. Some years, like the year Acorn was born, I was already so overwhelmed that the seasonal changes were completely unnoticed.
And maybe that's part of the problem too. I've been stressed lately...but not in the same sense that I was back then. This is more a death by a thousand cuts kind of stress, and I'm just not up to handling that sort of thing these days, because there are so many more important things to deal with. We're making plans for next year - plans for life without a trach, we hope. And that's a huge adjustment for all of us.
It's good, but stressful, and the fact that there are so many good things going on right now just makes the depressed mood stick out more.
Sunday, January 17, 2010
Traveling with your own portable field hospital
So yeah. We went to Florida for my brother's wedding over New Year's. We took Acorn. Some people were astonished, others in awe. No one really said, "you know, you should probably re-think this whole idea, because it's crazy." And even if they had, we wouldn't have believed them.
Frankly...we weren't ready to leave him behind.
We're still not to the point where he's been out of a hospital more days than he's been in one (though we're getting close - we extended the number of hospital days by a day this week, but we're within a month of making it). We have no family willing to take on learning how to care for him - Acorn's grandmas and grandpas won't even suction him, much less do anything hard. So our only option other than bringing him along was to leave him here with nurses 24/7...and we have a hard enough time keeping things together when we're both here every day that it seemed like a recipe for disaster to leave them in charge of him for 4 days.
Besides, who leaves their kids at home when they go to a big family event?
There was some marital strife in getting things organized - do we take the car seat on the plane? I didn't think so, but Big Oak intended to do just that, right up until 2 days before the trip. He also didn't really understand the meaning of the phrase "formal attire requested" on the wedding invitation.
In the end, we purchased a CARES seatbelt system (no compensation for this link - we bought it locally, and I'm just telling you my opinion about it). This turned out to be a fabulous idea. The car seat got checked (for free). We put Acorn in the airline seat, buckled in quite calmly, and he sat through both flights with no issues. He did get up during each flight to climb between our laps and flirt with the flight attendants, but expecting anything less from a toddler is just silly.
The reason this was such a great device though, besides it fitting neatly in a corner of my tote bag and containing Acorn for takeoff and landing, was that there really was no way we could have managed his car seat on the plane.
We had 2 carry-on sized suitcases of medical supplies and equipment. We had the backpack sized oxygen concentrator. And we had 2 backpacks - one for "immediate needs" like diapers and suction, and the second for "emergency backups" which included the emergency trach bag, ambu bag, spare clothes (have I mentioned that Acorn pukes several times a week still), and the backup battery for the oxygen concentrator.
You'll note there's nothing there for us, and no toys, food, bottles, or clothes.... We did each have a bag to carry on, and mine was half full of toys and bottles. *sigh* It's a good thing my computer is so tiny.
Carrying all this stuff through security in Detroit was no big deal. They have a screening line for families and people with medical needs, and they knew what they were doing.
Getting home from W. Palm Beach was not as smooth - no special line, and they didn't know what half the stuff was.
At any rate. One thing that we didn't really realize was that at home, everything is laid out. If we go out for the afternoon we take a duffel bag that is packed at all times. Things are in their places here, and everyone knows where to find everything. We've got cable management set up for all the power cords, and things have been sort of arranged based on usage.
While out of town, however....every time we left our room, we had to re-pack. How long would we be gone, what equipment would we need, what meds? Every time we went to do a normal routine care bit (changing trach ties, or cleaning Acorn's g-tube) we had to search through the bag of supplies to find what we needed.
We also didn't have the ability to just throw things in the wash when he puked, so we had a lot of things hanging over the side of the bath after they'd been rinsed out.
The biggest "real" problem we had was the lack of a break - no one there knew how to care for Acorn, and no one was willing to learn.
So, when he accidentally pulled his trach out in the middle of a night terror after we'd all gone to bed the first night...and he didn't turn blue, so we didn't figure out right away what the issue was....and an hour later we had nearly called for an ambulance after struggling for several minutes to get the smaller "emergency" trach in....
...we had no one to keep an eye on him while we napped the next day, and no one to sit with him when he was up at 7 the day after, and we couldn't stay awake.
We finally gave up on the ventilator our last night there. He was only supposed to be on 2 hours, and the night before it'd taken almost an hour and a half to get Acorn untangled, disconnected, connected to his nose, and then, because that had woken him up, back to sleep. There was no way I was spending more time messing with him than he was going to spend on the vent, and he slept just fine without setting off the pulse ox once.
The other thing that was really exhausting, besides hauling stuff from the hotel to the car to events and then back again was the questions. We take Acorn out a fair amount, and little is ever said, but for whatever reason, every place we went people had to ask "what's wrong with him" and other things like that, and it got tiring to answer over and over again.
When Acorn puked at the wedding, the facilities manager got upset and tried to make us go to the ER for an evaluation for a concussion, because he'd fallen and hit his head earlier. Telling her that he vomits regularly just made her more concerned, because "kids don't just vomit" - ours does, and this is so much less vomiting than he used to do that we're not even concerned, other than the fact that people won't let us actually clean him up.
I didn't manage to get a photo of the stroller with all the suitcases on it, but we do have this one from just before the wedding, with about half the bags on it that were on it during most of the trip - that's me, Acorn, and Big Oak in our wedding finery. I worry about our poor stroller, and hope it holds up, but we bought it used so I suppose if it falls apart, it's not such a huge loss.
So, the moral of the story:
Traveling with a trach kid (especially one still on oxygen and a vent) takes way more equipment and supplies than it seems like it should. It's also exhausting in a way that few other things have been on this journey of ours. Would we do it again? I'm not sure - we're still thinking about that. Maybe if we had a couple days off when we got back where we had nursing most of the time so that we could catch up.
Had our first night not been so messy, or had we had a day off when we got home, we probably would have been fine. Instead, we had 4 days of early morning doctors appointments in a row when we came home, and Acorn and I both caught a respiratory bug the weekend after the trip. We're only now feeling mostly better, and I am still behind on sleep.
Even so, we have already made plans for a very long day with no nursing next month to take Acorn to a powwow (my family is Lakota/Sioux, and I want him to have connections to the culture), and then to movie night at a friend's place, all of which is about 90 minutes from home. But there will be a nurse here when we get home, and it won't be 3 sleepless nights in a row.
Frankly...we weren't ready to leave him behind.
We're still not to the point where he's been out of a hospital more days than he's been in one (though we're getting close - we extended the number of hospital days by a day this week, but we're within a month of making it). We have no family willing to take on learning how to care for him - Acorn's grandmas and grandpas won't even suction him, much less do anything hard. So our only option other than bringing him along was to leave him here with nurses 24/7...and we have a hard enough time keeping things together when we're both here every day that it seemed like a recipe for disaster to leave them in charge of him for 4 days.
Besides, who leaves their kids at home when they go to a big family event?
There was some marital strife in getting things organized - do we take the car seat on the plane? I didn't think so, but Big Oak intended to do just that, right up until 2 days before the trip. He also didn't really understand the meaning of the phrase "formal attire requested" on the wedding invitation.
In the end, we purchased a CARES seatbelt system (no compensation for this link - we bought it locally, and I'm just telling you my opinion about it). This turned out to be a fabulous idea. The car seat got checked (for free). We put Acorn in the airline seat, buckled in quite calmly, and he sat through both flights with no issues. He did get up during each flight to climb between our laps and flirt with the flight attendants, but expecting anything less from a toddler is just silly.
The reason this was such a great device though, besides it fitting neatly in a corner of my tote bag and containing Acorn for takeoff and landing, was that there really was no way we could have managed his car seat on the plane.
We had 2 carry-on sized suitcases of medical supplies and equipment. We had the backpack sized oxygen concentrator. And we had 2 backpacks - one for "immediate needs" like diapers and suction, and the second for "emergency backups" which included the emergency trach bag, ambu bag, spare clothes (have I mentioned that Acorn pukes several times a week still), and the backup battery for the oxygen concentrator.
You'll note there's nothing there for us, and no toys, food, bottles, or clothes.... We did each have a bag to carry on, and mine was half full of toys and bottles. *sigh* It's a good thing my computer is so tiny.
Carrying all this stuff through security in Detroit was no big deal. They have a screening line for families and people with medical needs, and they knew what they were doing.
Getting home from W. Palm Beach was not as smooth - no special line, and they didn't know what half the stuff was.
At any rate. One thing that we didn't really realize was that at home, everything is laid out. If we go out for the afternoon we take a duffel bag that is packed at all times. Things are in their places here, and everyone knows where to find everything. We've got cable management set up for all the power cords, and things have been sort of arranged based on usage.
While out of town, however....every time we left our room, we had to re-pack. How long would we be gone, what equipment would we need, what meds? Every time we went to do a normal routine care bit (changing trach ties, or cleaning Acorn's g-tube) we had to search through the bag of supplies to find what we needed.
We also didn't have the ability to just throw things in the wash when he puked, so we had a lot of things hanging over the side of the bath after they'd been rinsed out.
The biggest "real" problem we had was the lack of a break - no one there knew how to care for Acorn, and no one was willing to learn.
So, when he accidentally pulled his trach out in the middle of a night terror after we'd all gone to bed the first night...and he didn't turn blue, so we didn't figure out right away what the issue was....and an hour later we had nearly called for an ambulance after struggling for several minutes to get the smaller "emergency" trach in....
...we had no one to keep an eye on him while we napped the next day, and no one to sit with him when he was up at 7 the day after, and we couldn't stay awake.
We finally gave up on the ventilator our last night there. He was only supposed to be on 2 hours, and the night before it'd taken almost an hour and a half to get Acorn untangled, disconnected, connected to his nose, and then, because that had woken him up, back to sleep. There was no way I was spending more time messing with him than he was going to spend on the vent, and he slept just fine without setting off the pulse ox once.
The other thing that was really exhausting, besides hauling stuff from the hotel to the car to events and then back again was the questions. We take Acorn out a fair amount, and little is ever said, but for whatever reason, every place we went people had to ask "what's wrong with him" and other things like that, and it got tiring to answer over and over again.
When Acorn puked at the wedding, the facilities manager got upset and tried to make us go to the ER for an evaluation for a concussion, because he'd fallen and hit his head earlier. Telling her that he vomits regularly just made her more concerned, because "kids don't just vomit" - ours does, and this is so much less vomiting than he used to do that we're not even concerned, other than the fact that people won't let us actually clean him up.
I didn't manage to get a photo of the stroller with all the suitcases on it, but we do have this one from just before the wedding, with about half the bags on it that were on it during most of the trip - that's me, Acorn, and Big Oak in our wedding finery. I worry about our poor stroller, and hope it holds up, but we bought it used so I suppose if it falls apart, it's not such a huge loss.
So, the moral of the story:
Traveling with a trach kid (especially one still on oxygen and a vent) takes way more equipment and supplies than it seems like it should. It's also exhausting in a way that few other things have been on this journey of ours. Would we do it again? I'm not sure - we're still thinking about that. Maybe if we had a couple days off when we got back where we had nursing most of the time so that we could catch up.
Had our first night not been so messy, or had we had a day off when we got home, we probably would have been fine. Instead, we had 4 days of early morning doctors appointments in a row when we came home, and Acorn and I both caught a respiratory bug the weekend after the trip. We're only now feeling mostly better, and I am still behind on sleep.
Even so, we have already made plans for a very long day with no nursing next month to take Acorn to a powwow (my family is Lakota/Sioux, and I want him to have connections to the culture), and then to movie night at a friend's place, all of which is about 90 minutes from home. But there will be a nurse here when we get home, and it won't be 3 sleepless nights in a row.
Tuesday, January 12, 2010
sometimes there's only so much one mom can do
I'm sitting here in Acorn's room, with the lights dim, long after he should be sleeping. He's been sick since Friday, and between the albuterol and the prednisone, he's kind of hyper. And we hadn't really gotten back to a normal sleep schedule after our trip, so sleeping isn't working out so well right now.
To add to it, I've been sick since Sunday. I called in sick to work yesterday thinking that a day to rest up and take it easy would cure my sore throat. It did....but the germs moved out of my throat and into my chest. I'm taking just about as much albuterol as Acorn is, and considerably more prednisone.
And I still feel like complete and utter shit.
I would like nothing more to be in bed right now, but it's Big Oak's night out. And honestly, I *was* feeling somewhat better this afternoon, so I didn't think this would suck quite as much as it does right now. But you know it's bad when you put on your kid's favorite movie so that you can go get your own meds so that you can stop coughing long enough to not pass out so you can give said child his meds.
Which, an hour after starting this post, I'm doing because he still isn't asleep, and he started wheezing. Of course, he spilled half of it, and then promptly went to sleep.
It's nights like this I really wonder about the sanity of this whole situation. But right now, I think I'll just crash here on the couch for a nap - both the night nurse and Big Oak are due within the half hour, and I really do need to go to work tomorrow after 2 days at home.
To add to it, I've been sick since Sunday. I called in sick to work yesterday thinking that a day to rest up and take it easy would cure my sore throat. It did....but the germs moved out of my throat and into my chest. I'm taking just about as much albuterol as Acorn is, and considerably more prednisone.
And I still feel like complete and utter shit.
I would like nothing more to be in bed right now, but it's Big Oak's night out. And honestly, I *was* feeling somewhat better this afternoon, so I didn't think this would suck quite as much as it does right now. But you know it's bad when you put on your kid's favorite movie so that you can go get your own meds so that you can stop coughing long enough to not pass out so you can give said child his meds.
Which, an hour after starting this post, I'm doing because he still isn't asleep, and he started wheezing. Of course, he spilled half of it, and then promptly went to sleep.
It's nights like this I really wonder about the sanity of this whole situation. But right now, I think I'll just crash here on the couch for a nap - both the night nurse and Big Oak are due within the half hour, and I really do need to go to work tomorrow after 2 days at home.
Monday, November 9, 2009
Randomness
I have a zillion thoughts zooming around my head this morning bouncing off the inside of my skull, even though (or maybe because) I'm exhausted and at work.
None of the thoughts flying around, however, are about the writing I'm supposed to do for work, of course.
So, saved for future writing so I can get them out of the way and get on with usefulness:
Our lack of respect for each other, from religion to skin color to age to disability to what clothes we wear and what we weigh, is the problem, not any of those surface characteristics. Changing how we look may affect initial impressions and reactions, but doesn't change how we treat people - and how we treat people is often based on those surface things. It's no wonder we have so many wars and so many people doing drastic things when they're stressed.
Drama with the EI instructor, and why Acorn failing next week's hearing test might be a good thing
Things I want in my new blog template....
Thoughts on introducing religion to Acorn, when most of his caregivers are a completely different religion
None of the thoughts flying around, however, are about the writing I'm supposed to do for work, of course.
So, saved for future writing so I can get them out of the way and get on with usefulness:
Our lack of respect for each other, from religion to skin color to age to disability to what clothes we wear and what we weigh, is the problem, not any of those surface characteristics. Changing how we look may affect initial impressions and reactions, but doesn't change how we treat people - and how we treat people is often based on those surface things. It's no wonder we have so many wars and so many people doing drastic things when they're stressed.
Drama with the EI instructor, and why Acorn failing next week's hearing test might be a good thing
Things I want in my new blog template....
Thoughts on introducing religion to Acorn, when most of his caregivers are a completely different religion
Monday, October 26, 2009
the EI saga continues
I sent Acorn's teacher a letter last week, detailing our concerns with her interactions with Acorn. We're waiting to see how things go now, but I'm still not sure she's really the right person to work with him, based on her experiences and way of approaching things.
She keeps asking how we know that he understands signs if he doesn't use them. By the same logic, do we expect that toddlers don't understand words they can't say yet? Then again, during the evaluation this past spring, she asked how we knew he was laughing if he made no sounds. *sigh*
We finally got her to start signing with him, rather than trying to get him to only point at things (she's apparently got a lot of experience in teaching kids to use alternative communication devices, which is not what he needs, since Acorn is already trying to talk over the vent, and already signing). Right now, she wants us to document signs used and how he responds because she's just not convinced that the signs posted on his wall are signs he knows.
Parent-Teacher conferences are coming up soon, and I am insisting on getting her and the various therapists (including the speech therapist that can't see Acorn because he's too young) being there if I'm going to take the time to attend.
She keeps asking how we know that he understands signs if he doesn't use them. By the same logic, do we expect that toddlers don't understand words they can't say yet? Then again, during the evaluation this past spring, she asked how we knew he was laughing if he made no sounds. *sigh*
We finally got her to start signing with him, rather than trying to get him to only point at things (she's apparently got a lot of experience in teaching kids to use alternative communication devices, which is not what he needs, since Acorn is already trying to talk over the vent, and already signing). Right now, she wants us to document signs used and how he responds because she's just not convinced that the signs posted on his wall are signs he knows.
Parent-Teacher conferences are coming up soon, and I am insisting on getting her and the various therapists (including the speech therapist that can't see Acorn because he's too young) being there if I'm going to take the time to attend.
Thursday, October 8, 2009
2 years of insanity
Sometimes I get the impression that people don't understand what I mean when I say that our life is crazy. In the last 24 months:
- my mother files for divorce and moves out of my childhood home.
- we walk out of Christmas morning festivities because my brother can't stop being insulting
- my car breaks down, twice - once while we're out of state
- the transmission went out on the van, resulting in us buying a new car, because the repairs were 3 times the value of the van (then again, I work for a car company, and I never liked that van anyway)
- 10 weeks of morning sickness from hell, bordering on requiring hospitalization
- Big Oak's grandfather passed away
- blood pressure issues in pregnancy lead to pre-eclampsia, and then to HELLP, with Acorn delivered by emergency C-section after a failed induction at 27 weeks.
- Found out our baby girl was a boy, and would need surgery to repair a birth defect of his parts
- Acorn has had 3 surgeries and one bronchial scope under anesthesia.
- Acorn got all the way to nasal cannual, almost ready to come home, and then suffered a respiratory crash
- I get to breastfeed, finally, but only 3 weeks before he crashed. I was already fighting to keep any supply at all at that point, and it really was the beginning of the end for pumping.
- Big Oak was struck by a car while crossing the street, one very short block from our house. His leg was badly broken, and he had to be completely off of the leg until after Christmas.
- Our house was broken into, while we were home, right before that Christmas. I confront the intruder - he gets my laptop, but I get his coat, which turns out to have his parole officer's name, phone number, and his appointment times on a slip of paper in his pocket.
- Acorn battles oral aversions - when he's allowed to eat post trach, it makes him gag.
- Acorn comes home, but is hospitalized 3 times in the next 10 weeks - 2 of those for RSV, one of them including transport by ambulance.
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