Sunday, September 29, 2019

The Time She Disappeared for An Hour

What a week.

This week reached entirely new stress levels when Maggie went missing for over an hour. One moment she was playing in the treehouse, right there on the video screen while I was making dinner.

She went under the porch to look for bugs. It's her favorite place to be, but I can't see her under there on the camera.

Usually it doesn't really worry me. Our back yard has a smooth, 6 foot fence that goes around it, and we've worked hard to make it kid proof, so that when they go outside, it's a fun, safe space for the kids to play in.

All of the kids were running around the house and the back yard, enjoying a perfect fall day.


Paul had just gotten home and walked in the door.

I asked him to go out and tell Maggie it was time for dinner, because the other kids had all drifted in, asking what we having and how long it would be, before settling down inside the house.

I'd had a new chicken recipe cooking in the crock pot that day, with chicken, cheese, bacon, and a ranch packet, and I was serving it with noodles. I just had to make the noodles and put it on plates, and everything would be done.

Paul went downstairs with the other kids for a few minutes, and when he came back up he went out to call for Maggie. When he did, she didn't come right away.

This isn't that abnormal.

If she's on a bug hunt she might be totally engrossed in what she's doing, so he went down under the porch to get her.

But she wasn't there.


He wasn't really worried. As the other kids gathered around the table, Sadie lifting Tessie into her high chair, it might have been any other day. But I felt an immediate sinking in my stomach.

I'd already been slightly anxious for no particular reason for the previous five minutes, since I'd asked Paul to go out to get Maggie.  I had no reason to be worried just yet, but I ran outside, as Paul started to search the house, thinking she must have come inside.

I was certain she hadn't.

Maggie does very few things quietly and I knew she hadn't walked behind me and come into the house. I knew that she was still outside. And if she wasn't in the yard... the thought made me sick.

I ran around the yard, checking all the places Paul had already checked.

It was entirely empty.

I ran back inside.

"Did you find her?"


Paul shook his head. "Then she's gone." He was heading out the front door to search. "I'll call 911."

"Do it." he said.

I ran through the house, searching and then ran next door and banged on our neighbor's door. She ran with me barefoot to sit with the kids, while I ran outside, suddenly overwhelmed by the hugeness of the world and how Maggie was nowhere in sight.

I called my mom next.

"Maggie's gone." I said.

"I'm on my way." She responded.

I got in my car and drove. Nothing was making sense. Every time Maggie has eloped it's been barefoot down the middle of the street. It attracts attention.

When I called 911 I half expected the same response as last time- for them to tell me that they already knew, even though she had only been gone for a few minutes.

I drove past the nearest pond, which is still a good ways away, and turned when I saw my parents cars headed towards me. If they were coming down the road there was no way she'd gone that way.

When I got to the intersection nearest our house I found that my dad had parked in the middle of it and was telling every car that went by about Maggie.


I called 911 again. It felt like everything was taking forever. They told me to go home and wait for a police officer there.

I did and sat on the grass on the front lawn and cried until he pulled up and I ran up to his car and answered all his questions, thankful that I could still picture her black shirt, purple skirt and pink pants clearly in my head, and that I knew her exact height and weight from her last doctor's appointment.

As long as I was giving answers I could pull it together. In the silence, when I no longer had a purpose and was doing something to help find her, when I was waiting as more police and searchers began to arrive, I would fall apart again.

They brought a dog, and were bringing out more. They got out a drone. They were calling in air support. Another neighbor called her ex-husband who immediately jumped in his truck and drove over from another town and began to search.

People began to show up in brightly colored vests looking for her.

The dog ran back and forth behind our house but couldn't pick up her scent.


Paul came home from his own search. He ran into the house just after the police officer had sent me in to search again. I'd gone through it three times, and the kids had searched it too with no luck.

It felt useless to me. She'd never, in all her life hidden before. I couldn't imagine her starting now.

"Search every place that isn't locked," he said. And I did.

She wasn't anywhere.

Then I heard Paul's voice "I found her." And I raced back downstairs.

He was on his way up with her and there she was, safe and sound, and I was hugging her and kissing her forehead, and she gave me a "what's the big deal mom?" look as we took her outside to tell the police that we had in fact found her.

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And now for what happened.

She never came inside through the door.

She had broken in through our bedroom window on the bottom floor. She pried the window open and then pulled off the screen and then pulled it through, into the room after her, to cover her tracks. Then she closed the window completely, so when we went into the backyard, we didn't see a thing.

Then she ransacked the room.


I'm pretty sure that when she came in through the window, she knocked over the Our Lady of Fatima statue that was just inside of it, shattering the base, along with a cup of coffee that I'd forgotten on the bookshelf by the window. And that was probably the moment when she decided to hide, sprawled out on the bed, looking at puzzles and books.

She knew that she was someplace she wasn't supposed to be and now something was broken. She was pretty sure she was in trouble and she decided to stay put.

Everyone was extremely relieved to see her smiling, giggling face.

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And that is the story of how Maggie disappeared for a little over an hour and was found safely at home.

I think I have at least 100 new grey hairs from this week. But I am so, so thankful that we found her and that she was safe.

And I've spent the last couple days working on setting up a few new cameras so that there are no blind spots in the backyard, even when she's under the porch. Because of random rainstorms when I'm working we're not 100% there yet, but it should be up and running by the end of the week.

That girl.

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And here is the video that I made the day that it happened:



One of my favorite videos because I think this is such an important topic:



And a video jam packed with Tessie updates on her development and what she's doing at the moment. And she helped me make it!



Now I'm just hoping that this coming week is much, much less dramatic than the one we just put behind us.

I feel like I could sleep for a week.

Sunday, September 22, 2019

Words, Lines, And Who Needs Sleep?

I mentioned on Facebook that Tessie had gone from "happened" to her first sentence of "I want cheese." The next day she said "go play." And today it was "okay" to everything.

She's also babbling non stop now, little nonsense sounds, which is great, because it was a developmental step that needed to happen, and it's finally happening! 


This morning I woke to find she had carefully arranged a collection of her favorite My Little Ponies on the edge of her bed and she was sitting in the bed staring at them to see if they looked just right.

And of course because she had been the one to arrange them, they did.


Apparently we're missing Rarity.

On Friday night she partied all night long.

It was like exhaustion didn't exist. Sleep was something her body just didn't need, despite not having a nap all day long. She played in her room, insisting that the lights stay on while she played with her ponies and ran back and forth across the room.

And then 9 am rolled along and she was furious with me when it was time to go out and run errands because she was ready to go to sleep.

Had I no decency? It was finally bedtime?


As a result of my insistence that she get up and come with us, she slept very well last night.


In other news, today is our 13th anniversary!

The kids spent the morning looking at an album of wedding pictures and debating whether or not we had kissed on our wedding day with huge amounts of giggles.


And what a 13 years it has been. Happy Anniversary Paul!

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Meanwhile in all things video... Maggie had an amazing Sunday. She did so well at Mass. She had so much fun on the swing at Nani and Bopa's house. It was just a very good day.



And I made a video of my cleaning routine. It was fun trying to make a silly thumbnail.



And lastly the most interesting things I read about in this weeks autism news including a study where they found that girls on the spectrum have structural differences in their brains while boys don't. I thought that was super interesting!

Tuesday, September 17, 2019

Play, PFTs, and My Baby Growing Up

Tonight I peeked through the door and saw Tessie holding the Queen of Hearts on Pinkie Pie's back (a My Little Pony for anyone who doesn't know) as she sat in the middle of the play room floor. Earlier I had watched as she carefully rearranged Rainbow Dash's colorful hair while clutching a toy otoscope, trying to figure out how to use it on a horse with so many curls that kept tumbling into the way.

I think that she just leveled up in the imaginative play department.


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Meanwhile Maggie's interest has shifted from bugs and snakes this week to worms and snails.

Maybe she'll become a malacologist and we will joke about the beginnings of her interests someday but honestly, I'd be okay if she was a little bit less interested in creepy crawly slimy things. Although at the moment at least she's been leaving them outside.

And at least she's leaving the brown marmorated stink bugs alone. For the moment at least (if you aren't from Michigan you may not know that we are just stepping into the beginning of the wonderful and absolutely dreaded Brown Marmorated Stink Bug Season when they are suddenly everywhere).


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Today Patrick had his first pulmonary function test. 

I have no idea what the results were like. From what I could tell he did roughly the same before and after the nebulizer treatment. 

But when he couldn't breath at home the nebulizer treatment definitely made a huge difference.

So now we wait and see what they say at his doctor's appointment next Monday.

Right now they have him using his albuterol four times a day and that has made it extremely easy for him to breath all the time, and prevented any more scares from occurring but hopefully we can get it all under control soon without needing the rescue inhaler quite so much.

He and I did have a lot of fun today though going to the science museum as a treat before his appointment! 


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Sadie is running for student government. They had to get signatures on a petition to run and give a speech. 

When they asked if anyone was ready to give their speech in class yesterday, Sadie was the only one to volunteer, so now she's just waiting for the election to see what happens. 

Today when I was at a second hand book store I ran across a bunch of American Girl books that I know she enjoys reading and in the bunch there was one about how to handle bullies.

When I gave them to her tonight she glanced at that particular book and then pointed to the title and raised her eyebrows and said "Mom, I don't really need any help at all with that. I know how to handle them." with a confidence that I couldn't have even imagined a couple of years ago. 

My not so little baby is definitely growing up.


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And James? 

What can I say about James.

Tomorrow he will go to have dinner at Nani's house, but he will not eat the sticky rice that all the other kids love. His reason? 

"The rice is 'too ricey.'"

Sometimes at home he'll decide he's going to pay me a compliment. 

James loves giving compliments. Usually he's quite good at them. Once and a while they go off the rails in the most hilariously awkward ways. For example more than once I've heard: "Mama. You are the most wonderful cooker in the world. You really are. Even when I hate what you make and I won't try it. You're wonderful." 

Um. Thank you? I think? But maybe just, taste the food?


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And in case you've never heard me say Maggie's name... it doesn't sound quite like most people would expect. Unless you're from North Dakota.

Then maybe it does. And this is why.



Saturday, September 14, 2019

Ashes, Ashes... Let's Scare Mom!

There are so many ways that Tessie reminds me of Maggie when Maggie was tiny, and there are so many ways that the girls are very different.

Tessie is calmer and quieter than Maggie ever was at the same age. She seems less bothered by the world, and she sort of takes everything in stride. When she's trying to do something she has a tendency to work and work and work at it.

Her frustration level is usually so low when she's trying to figure something out on her own, that I sometimes find myself marveling at it, because I'm there ready to help, but she doesn't want my help, she wants to do things for herself. 

The two big ways she reminds me of her big sister though, is that she is daring, just like Maggie, and now that she's beginning to use words, she's finding very creative ways to express herself.

Maggie had "come on" when she was Tessie's age and she used it for almost everything. 

Come on! meant "hurry up." It meant, "can you hand me my sippie cup?" It meant anything that she wanted it to mean when she was in a hurry and she was always in a hurry.

Tessie's phrase of the moment is "Happened?" 

She finally managed to say it a week ago and was absolutely delighted with herself.


Sometimes she throws in the "Wa?" before the "happened" for a complete "Wa happened?" but usually the happened just stands on its own.

Yesterday she was running and she managed to bump her head lightly. She immediately stopped, and touched the spot, before turning and saying "hap- n'd?" in a barely understandable (because she was a little bit upset) voice. Then she was off and running.

"Happened?" is for everything and she delights in saying it and in being clearly understood.

But that isn't the only word that's come out this week.

Apparently Tessie is a big fan of Ring Around the Rosy. When I picked her up at school they told me that she was even singing the last verse to the tune, all by herself.

And sure enough later that day I heard her humming it.


"How cute!" I thought at the time, excited by all the strides in communication she's been making lately.

A few hours later the kids and I were all gathered in the living room.

Maggie was excited. She was zooming around the room giggling. I had finally figured out how to watch a video I had made, upstairs on the big TV, and Maggie was watching a video of herself swimming at the pool.

She was elated, and was narrating everything that happened. "Swimming? Swimming at the pool?" she scripted as she zoomed back and forth giggling, holding not one but two mermaid dolls in her hands.


I was so focused on Maggie and her excitement that I hardly noticed the tiny voice singing behind me at first. But then I did.

Tessie had just gotten up from where she was sitting next to me.

She had climbed up on the back of the couch.

She was standing there, and the sound that had caught my attention?

She had started to sing "ashes, ashes..." and that was when I caught her before she could completely fall to the ground.

Apparently she also has inherited her sister's early lack of fear of heights. I hope that like Maggie, she outgrows it as she gets older!

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Speaking of lots of words Maggie has been talking up a storm and I love hearing all of her words. So I made a video where I captured as many of them as I had on camera from the last week. 


And I usually don't add my weekly Autism News Episode over here, but midway through it is an update from the study in Boston that Tessie was in and it was so interesting!

They were able to identify consistent differences in the EEG results of the kids who were 12 months and under who were on the spectrum. And I talk more about that here:



Now to get the kids up and moving because we have a fair to go to today.

I love this time of year!

Thursday, September 12, 2019

Telling Tall Tales

James has always been a super articulate little kid. It's like he got all the words that everyone else didn't get at a young age and he hit the ground running with them. 

He speaks like a little grown up and has sat in many an IEP meeting with me charming adults and surprising just about everyone with his vocabulary. He just seems to like big words. 

And he loves giving complements, especially to people that he just met. A woman who works at the school told my mom as she was picking him up yesterday that he had told her that she was beautiful earlier that day. 

But he also has a bit of a temper and it's long been a running joke among certain older siblings that if I have to be called to the principal's office in future years it's going to be for James. 

So far, his year and two weeks in school has been entirely uneventful and he has behaved himself admirably (at least as far as we've heard). 



Still, he came home with a story last week and as he told me his tall tale I found myself struggling to hide a smile.

Me: "So buddy, how was your day?"
James: "Bad. Really awful. Horrible."
M: "Really? I'm sorry Jamesy. What happened?"
J: Well. Miss A was in a mood and she said that I couldn't talk all day long for no reason. And everybody else could talk except for me, but I had to be quiet all day long! 
M: "And this.... no talking? It didn't happen... after you got in trouble maybe?"
J: "No Mom! Here's what happened! The whole class was being loud and I was the only one in the entire classroom being good and quiet and listening and she came over and I got in trouble and had to be quiet all day long." Sighs dramatically. "It was so unfair."

The thing about spinning a lie when you're four and a half is that you don't know not to take it a bit too far in the telling, making yourself a tad too saint like for your mom, who knows you, to actually believe the story. 


It ought to be an interesting year!

----------------------------------------

And now for something totally different.

I brought a camera along as I dropped the five kids off at their four different schools/therapy centers. 

This is what a typical morning looks like for us on weekdays. It can be more than a little hectic! 

Tuesday, September 10, 2019

Tessie Didn't Need Help

I was in the kitchen yesterday making dinner when I heard a blood curdling scream.

"Mom!" came Patch's voice almost immediately, before I'd even taken a single step. "Maggie just took Tessie's crackers." A few moments earlier I had given him sandwich crackers to distribute, and he'd handed out two to each kid.

But the scream only lasted for a moment. Before I could even take a step I heard him go on: "Never mind Mom. Tessie took it back!" his voice was tinged with awe. This was not something that either he or James would dare to do.

I turned back to what I was making for dinner.

I shouldn't have been surprised.

Tessie may not be very verbal, but as the youngest of five, she most definitely can hold her own in most confrontations.

She stays  to herself most of the time, but heaven help anyone who tries to take something she's playing with, because she is transformed from a sweet curly haired little girl who hardly makes a sound, to a little bruiser ready to brawl over a sandwich cracker which her much bigger sister has stolen or over who's turn it is on the lower swing which she can easily climb into (James tries to steal it from her frequently).


And Maggie, who thinks that Tessie is the most awesome person on Earth, let her have the cracker back, which is the second most shocking part of this whole story to anyone who knows her.

It's also the third most shocking thing I've seen this week, #1 being when Maggie cried for a mermaid toy that had fallen on the ground in the car and when we were finally stopped and I could retrieve it she handed it to her younger sister twice and said "here Tessie" in the sweetest of voices.

The second most shocking moment was when she offered to let Tessie hold her purple (so favorite) sequined mermaid doll on the way to school on morning so that Tess could stim on the tail sequins.

And because I cannot stress this enough, she wasn't just sharing her mermaid dolls. She was sharing her absolute favorite mermaid dolls.

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For those who watch the vlog, here is a special day when all the kids were in school when Tessie and I got to go out and have fun, just the two of us.



Now for a little rest before dinner because today is a Tuesday that feels like a Friday.

Saturday, September 7, 2019

I Didn't Think We'd Homeschool Again

Yesterday when Tessie, Maggie, and I got home Tessie was sound asleep in her car seat. So I tucked her into bed and I gave Maggie the choice between starting school at that moment or going outside.

She quickly said school, which surprised me, because she'd just been working hard from 9 to 3:30 already and I was more than willing to give her a break. 

Right now I'm still really trying to get a feel for exactly what the girl knows.

She is very good at hiding it because she knows that if other people know what she knows, they'll expect her to do all sorts of work.  



But now and then she's read words that are way above what anyone suspects she's capable of and it's happened enough times that I knew that her report cards last year didn't reflect what was actually going on in that head of hers, even if they definitely reflected what she was showing in the classroom.

I've been working out what motivates her the most and what is the most effective while we're focusing on reading.

Right now it's mostly me drawing stick figure mermaids.

Maggie loves it when I draw her mermaids. 


By far the hardest part of any learning session is simply capturing her attention.

I will write down a word on the little lined white board we use and she will immediately say the first word that I wrote down on the previous day without even looking.

"Maggie, read. Look. Look at the word. That's not looking. Your eyes are way up here. Look at the board." I said at first as her eyes darted here and there and everywhere around the room except at the word.

Then I learned the art of negotiating.

"You read first then I'll draw one mermaid."

She immediately looked at the whiteboard and read the word.

Yesterday she read word after word for 15 minutes, which was by far the longest single sit down session of reading she'd done so far. At the end her paper was covered in tiny blue marker drawn mermaids.

Then it was time to go outside.


But once we got there we realized that it was actually raining.

Maggie didn't care. She said "Mommy splash in the rain!" and grabbed my hand and pulled me down off the porch and into the rain with her, giggling and chattering away about mermaids and running and plashing and swimming in the rain.

"Can I hide under the porch?" I asked her, pointing to the new area under the porch where she collects bugs that I recently weeded and cleared.

"Mommy splash! Swim in the rain!" She replied. That was definitely a no to hiding under the porch.

And so we splashed in the rain.


Maggie's favorite holiday is coming soon. It's Halloween.

It isn't the costumes.

It isn't the decorations that will be springing up all over town soon.

It's that she gets to walk around and people give her candy.

Maggie says "trick or treat" year round when she's lobbying for candy.

The other day she started to get sad when I told her that her favorite aquatic center was closing for the winter.

Then I pointed out that while we would miss it, it meant Halloween was coming soon and her entire face lit up. She was thrilled and finally stopped asking about the pool every single day when I picked her up in the afternoon.

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Now the leaves are just starting to turn and this time, between hot and humid summer and frozen winter is one of my favorite times too. Every time I see a hint of orange or yellow or red peeking through a cluster of green leaves I get excited for the days to come.

When Maggie was diagnosed with autism I slowly let go of my dream of homeschooling her until it was something that I really couldn't even begin to imagine doing.


This past winter we began to discuss the possibility again, only this time I was reluctant, weighing every other option that I had.

Could I really do this, teach my very smart, child who is so very creative at getting out of doing what she's supposed to be doing?

By the end of December we were decided. And every day that goes by now I feel more comfortable with the decision, as Maggie lets in on the secrets of what she actually knows.

I'm looking forward to the day when she can actually enjoy reading because I think that could be such a great escape for her, as it is for so many of us.

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I have never been more afraid to make a video than I was to make this one. I put it off for a year, while feeling like the message in the video was important and could help others.

I tried once, last year, and just ended up sobbing.

This is the story of the time I ignored my instincts as a parent and how very much I regret that now. It is also the story of the very hardest thing that's happened to our family... ever.

 

I have thought about writing about it, but I did that once, before we went to see the forensic doctor, and it was so emotionally trying that I'm still not quite there and I'm not sure I'll ever be.

So for now and maybe forever it is in video form. Because sometimes sitting down in a big empty park and talking to my camera is the second best thing to therapy.

Thursday, September 5, 2019

Tessie is Tough

Tessie let us know again about a great injustice in her life.

She had apparently stashed a crust from a sandwich along the inside seam of her car's seat, where it meets the floor and as she tried to crawl on her belly to reach it Sadie stopped her, while I was helping Maggie into her seat.

"Sad, sad, sad!" she shouted as her sister told her that that was very gross and scooped her up off the floor.

She has a new word and she most definitely knows how to use it.


Every day when I pick Tessie up from school the first thing she does is run to me and lift up her arms so that I can pick her up.

Then once I do, she quickly swipes my sunglasses off of my face.

Originally this was so she could see my eyes. But after doing it a few times she realized that if she flipped my glasses over they actually sort of fit her, and so now she has a new motivation for her sunglass theft.


And while she may not look it, Tessie is actually quite a little bruiser.

There is a certain older brother that is not quite two years older than she is who often gets into tussles with her over whose turn it is on the "favorite" (aka the lowest) swing.

They are almost exactly the same size, from their shoes to the size clothes that they wear.

And I can confirm both that he does not let her win and that Tessie has not yet lost a fight over the swing (this basically always happens when I'm making dinner and they all decide it's the perfect time to swing on the swings).

I think being the youngest of five has made her exceptionally scrappy.

Now I think I'm going to have to stop because I keep dozing off.

I missed my blogging time earlier at a parent training at Tessie's school. When I walked in and she saw me she said "hi!" and hugged me, which made it a pretty good day!

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Tuesday, September 3, 2019

3 a.m. Good Morning

Tessie kicked off our day at three a.m. when she appeared at the door of my bedroom wearing bunny ears and hopping up and down excitedly. She had already been up for several hours around midnight with Paul, so I understood upon hearing the lights click on and hearing her tiny footsteps padding across her room on her way to our door that it was my turn to try to get the tiny troublemaker back to sleep.

But really, I know that I cannot complain in any way about Tessie's sleep habits. 


She was two weeks old when she started sleeping through the night every night.

And I don't mean six hours. I mean 12 hours if I didn't set alarm to wake her to eat, which we discovered because I assumed, being a newborn she would just awake on her own like all our others had.

Having had an older sister who didn't sleep more than an hour at a time for the first 18 months of her life I knew what a blessing this was.


But now at 3 years old, Tessie has a mind of her own.

She has big ideas.

And sometimes that involves waking up at 3 am to play with her ponies while wearing bunny ears in the playroom and yelling for mom to come join her.


Tessie is, so far, the least verbal of all of our kids as a three year old.

She has less than twenty words, which means that she says less than Maggie said at the same age.

But in the last month she has begun saying more and more, at what seems to be a rapidly accelerating rate. This morning she threw herself on the floor of the car when I was trying to get her into her car seat and shouted "Sad! Sad! Sad!" in a tiny perfect voice because she wanted to be given a chance to pick up a toy cell phone before settling peacefully into her seat.

I scooped her up and kissed her about thirty times, while Maggie said "Tessie alert!" (something my phone says when the car stops to remind me that she's there) and then together we headed to her school where she twirled around at least a half dozen times on the way to the front door, wearing her full sized backpack which looks enormous on her tiny frame.


Those early nights when she slept so deeply were likely because she was having many central apneas and hypopneas a night and it's scary to think that high CO2 levels are probably why she slept 20+ hours a day as a 6 month old.

Which is why now, when she wakes up, I sometimes find myself thinking "this was how it was supposed to be" as I try to convince her to go back to sleep, while also being very grateful that she survived those early months when we didn't know what was going on.

Tessie has gone from dozens of central apneas a nights and hundreds of hypopneas, to a few apneas a week at the moment. We now have multiple nights in a row where her alarm doesn't make a sound. It seems that she really may be outgrowing it (and interestingly it seems to me that as they've decreased her other skills have increased... maybe because she's less tired?).

And for that I am definitely willing to trade some sleepless nights spent convincing her that her ponies need to rest because they have an early morning that will be arriving very soon, and so do we.
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Sunday, September 1, 2019

The Princess and The Super Hero

When I saw the dress on the hanger at the second hand store I knew it would be perfect for her. 

$8.50 was the price on the tag and so I picked it up, and then it was time for dress up and playing in the back yard when we got home.

Maggie, with her flare for the dramatic, was immediately transformed into a princess:




But then the boys arrived.  Two tiny Spider Men. And the mischief began.

You see, Maggie loves to call James "baby."

And James, like any self respecting four and a half year old who sees his fifth birthday looming in the very near future, hates it.

He always corrects her and says "Big Boy Maggie. Big Boy." 

And I'll explain to him that it's just like how he'll always be my baby, because she used to cuddle him so much when he really was a tiny baby. But this answer is not acceptable. 

And so the battle over getting her to call him anything other than "baby" continues. 

I'm fairly certain she does it because she knows it drives him crazy.


"Remember Maggie," I'll say. "He's a big boy. James is a big boy!" And she'll snort and mutter and chuckle to herself and say "baby" under her breath or out loud depending on her mood. 

So basically it's a pretty typical sibling relationship. 


Meanwhile Patrick was coaching his little brother on how to actually be Spiderman.


They raced around the yard together fighting bad guys and saving the day.


And Patrick was even coaching James on how to properly form his hands to shoot spider webs.


All in all it was a very good day.

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Saturday, August 31, 2019

He Couldn't Breath

A couple of weeks ago Patrick had a doctor's appointment and while he was there I mentioned that I thought the possibility of him having asthma that we'd talked about in the past, had developed into exercise induced asthma.

I've long been nervous about Patch's breathing. He was a wheezy baby, but gradually that went away.

But in so many ways his breathing, and health in general, reminded me of Sadie. And then I began to notice that despite being very active, he was becoming breathless and having coughing fits a minute after he'd begin running around with his brother and sisters.


His doctor knew about my concerns and had explained that it did sound like he was more prone to developing asthma, but there was a chance that he wouldn't. Some people can go either way.

But when the coughing fits started and I saw it really effecting his play I decided it was time to talk to his doctor again.

So a couple of weeks ago we came home with an inhaler from his doctor's office, to be used before he went out to run around, and an order for a PFT.

We were waiting on the call about the PFT, when yesterday came meandering through out of nowhere and smacked into us, in the most terrifying of ways.

I think that Patrick must have been feeling sick, because he came down and climbed into bed between Paul and I, which was something neither boy has been doing regularly in quite a while. He slept for a while, and I hardly noticed that he was there until the coughing started.


He coughed for about thirty seconds and I helped him sit up, asking Paul to go get his inhaler, because I had a sudden sinking feeling we were about to need it.

His coughs didn't sound quite right.

By the minute mark he was wheezing as he coughed and struggled to breath.

I didn't know that Paul was struggling to find the inhaler because it had gotten taken upstairs to Sadie's room with a bag of medications after a slumber party at Nani's house.

The inhaler, we'd thought, was only going to be used before he exercised or ran around. It hadn't seemed important to put it somewhere to be found at a moments notice like we have to do with Sadie's. And I had thought I'd known where it was. But I was wrong.

It took Paul a few minutes to find it and by the time he did Patrick was panicked and wheezing and coughing and sobbing and completely incapable of using the inhaler, even with the spacer.

We both tried to coach him through it, but with little luck.

He couldn't breath coordinate breathing out, or putting his mouth effectively around the spacer.


Then I remembered Sadie's nebulizer.

I raced downstairs and grabbed it and within another couple minutes was holding the mask on his face.

Within another minute his breathing was easier. By the time we finished the treatment I still thought his breathing sounded horrid but he said it felt fine.

He had another attack three hours later.

And that is how we ended up back at the doctor's office yesterday. There was one appointment available for the day, with a doctor we've seen before, and of course we took it.

His chest sounded fine, but he was stuffy. But I played a little bit of the video from one of the security cameras and she thought the cough sounded like croup (which he's also had before).

Sometimes albuterol can work on croup apparently too, so the nebulizer working doesn't rule out the possibility.

She does have him using his inhaler four times a day as we wait on his PFT, and for that reason didn't prescribe QVAR or a preventative medicine just yet.


And every time he uses it, it apparently becomes much easier for him to breath, so I'm thinking it might be a bad combination of both croup and asthma.

She also prescribed presidone in case it gets worse again (I'm pretty sure I now have three prescriptions of "just in case presidone" around here for various people).

Benadryl seems to be helping, along with his regular Zyrtec, too. And of course that four times a day use of his inhaler.

This year has been so good in some ways and so brutal in others. But I'm cautiously optimistic that if this is asthma, hopefully we'll have it under control soon. Sadie's is pretty well controlled now (she only needs her inhaler a few times a month and her pulmonologist is working on getting her to the point where she needs it even less than that) and hopefully, if that's what this is, his will be soon too.

Now if everyone could just stay healthy and uninjured for five minutes that would be great!

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And for anyone interested in a few highlights from the vlog here are a few of the latest videos from over there: 







Thursday, August 29, 2019

We Were That Car in the Drop-Off Line This Morning

Today I was THAT parent in the drop off lane.

You know the one.

The one that takes forever.

And I didn't even see it coming.

James is four and a half but as the fourth of five kids, he can tumble out of the back of the car with his brother and sisters like he's storming the beaches of Normandy. The kids have a tendency to race to get places, even when they're been told "okay, no racing," so I know that he can move.

Today however, took a turn when, after dropping Sadie off at Middle School I heard a small voice from the back say "Mommy. I have to tell you something."


My immediate thought was "Maybe now, as I've just pulled into the drop off lane, isn't the best time, dearest" but there were about six cars in front of us, and no cars behind us, because it was still half an hour until school started and so instead I said "what's up Buddy?"

"My. Waterbottle. Just. Came. Out. Of. It's. Pocket." He said, his voice trembling.

As someone who has not been with our family this past week, you may not understand how monumentally dangerous I immediately understood this moment to be.

There have already been hysterical tears over the correct placement of his Paw Patrol Water Bottle in his Green Slime Backpack twice this week (and it's only Thursday morning, so that's 2 out of 3 of the morning runs completed). Fortunately those other W.B. disasters happened before we left home, where they could be quickly dealt with.


Now we were in the drop off lane. And getting closer to the front every second.

I did not ask why on Earth he was touching the water bottle in the car AGAIN, which I'm pretty sure means I deserve some sort of Mommy gold star towards a free coffee. Instead, as two cars pulled forward and we inched our way towards the front I said, in my calmest calming voice, "do you think you can slide it back in there Buddy?"

"NO I CANNOT!" he replied as we reached the front of the line.  As I glanced back I realized that his bones had been transformed into jello-y mush and he had now slipped down in his seat like the tiny puddle of preschool drama he so clearly had become.

"Can you just...Hold it in your hand as you walk in? Look right there buddy. There's a kid with a water bottle in his hand! Just do that! And you can put it away in your classroom!" Stress seeps through the forced brightness in my words as his older brother tumbles in an appropriately quick manner out of the car.

"NO I CANNOT!" comes the answer again.


"Okay dude. You've got to go. We're holding up the line. Up, up, up. Leave it. If you can't carry it, you can have it after school."

To my abundant surprise he listens. He makes it to the door.

But then Maggie, his nine year old his sister, who's in the middle row captain's chair and is on the autism spectrum, starts to giggle which is what she always does in stressful situations.

"DON'T YOU LAUGH AT ME MAGGIE!!!!" he shouts as the principal arrives the door of the car to welcome him to school (and probably see what the hold up is).


"Are you okay buddy? What's wrong?"

Oh no. Don't ask that. He's almost out. He's literally centimeters from exiting the car.  I scream internally, while outwardly managing a polite smile of thanks for her concern.

"My water bottle." He gulps the words out in one great rush. After almost pulling it together he starts to break down again, as he remembers why he was upset, and not just his anger  because his nine year old sister is annoying him.

"Oh? Do you need your water bottle?"

The silent screaming in my head doesn't drown out his adamant claim that he does need it. He slowly stumbled back to the back seat and picks it up (as only a kid with low tone who's been waiting for an opening after a PT referral can do), then slowly stumbles to the front as I sink down a few inches lower in the driver's seat and try to disappear.

Finally he makes his way past his sister.


"Maggie's sock fell out!" Patrick tells me, because of course, by now her socks are off her feet and on the floor in front of her, and directly in front of the door that James is stumbling out of.

"Throw it back in." I reply. "And have a great day." The car doors finally close and as they head towards the school's front doors I glance over my shoulders to see that "no one behind us" has been transformed into Cars Lined Up All The Way to The School's Driveway Entrance. And possibly down the street, but at least I can't see that far because of the corner.

I die a little.

We pull out of the parking lot and I fantasize for a few minutes about the abundantly clear instructions the four and a half year old is going to have tomorrow about unloading at drop off, and then spend another ten minutes wondering if I've just single handedly gotten kindergarteners and K-club banned from using the drop off lane (they're already banned from being picked up there).

Because if that's the case, we're in real trouble.

I have to drop the boys off by myself each morning, on my way to dropping off our two autistic girls at their two individual schools, which are roughly fifteen and thirty miles away, respectively.

We don't do buses, because with medication rules, they can't have their inhalers on the bus for the hour and a half bus ride, and two of our kids have inhalers and I feel like that's just too big of a risk.


And walking them in? I imagine it's physically possible, in an abstract sort of way.

And dangerous.

I would have our nine year old, who loves to elope and is a genius at escaping (and may just be melting down, because mornings are prime melt down time) and our three year old, who collapses randomly, and who I also have to hold onto every moment to keep from running off, trying to fall into every puddle she sees, and then freaking out because she's wet and HATES how that feels navigating the path to the school.

Loading and unloading them into the car by myself is the stuff that nightmares are made of. Can I do it? Yes.

Do I avoid it at all costs? Also yes.

So I risk an occasional slow morning on those days when my four and a half year old is having a moment to keep everyone a little bit (okay a lot) safer and to keep myself a little bit saner.

And I hope that the cars behind me understand when they see my red eyed four year old tumble out of the car, that the reason behind the unreasonably long unloading time was because of a rebel water bottle, and not because I was scrambling an egg for my kid in the car and serving him breakfast.