Tuesday, September 18, 2018

The Flyers are Gone

I'm hesitant to post videos in which I break down, sob hysterically and admit to apparently committing a felony (but I guess I unknowingly did that yesterday when I so joyfully posted my flyer idea), but some of you have been with me for a while and what's a little oversharing between friends who've been along for the ride for nearly a decade (besides Paul is now explaining that it "requires willful intent" according to whatever he's reading right this second, which obviously we didn't have).

You guys. Today has been rough.

I'm running on not that much sleep.

Last night Sadie had a sleep study up at Devos Children's and what I was planning on doing was coming home and doing some cleaning and maybe taking a nap because the little pull out couches at the hospital are not all that comfortable now that I'm not as young as I once was.

I spent a lot of last night, not sleeping.

But then my phone rang.

It was a local number and my mind immediately jumped to wondering if there was a problem at school with one of the kids.

But it wasn't that.

It was a problem at the post office with the flyers that they had confiscated and they were calling to berate and scold me for the better part of five minutes.

My quick apology was not enough.

Because why accept a contrite and genuine apology when you can continue to shame and yell at a mother who was obviously desperately trying to keep her child safe?

I mean really obviously I was trying to cheat the US Postal Service out of stamps, right?

No actually, the move to put flyers in boxes was pure desperation born of trying to reach neighbors who wouldn't answer their doors or interact with us in any other way.

And not many people have storm doors here, or we would have put them between those, I promise.

Obviously neither Paul or I knew this particular law (sigh) or we would have found another way, cramming them under doors or something along those lines, but at the time, it seemed like a good idea.  I've seen neighbors put things in my box and I'd never had a problem with it, returning all the letters that our postal deliver frequently puts in the wrong place.

Mostly I was just grateful that it didn't take several days to get them back when she misdelivers this that are important.

I'm not quite sure it was deserving of quite that level of scolding after I'd made it clear I a) was sorry and b) had no idea it was against the rules. But she needed to be certain I'd "never try anything like this ever again."

Right. Mission accomplished.

I'm pretty sure this experience is pretty unforgettable.

Monday, September 17, 2018

The Eloping Flyer and Talking to Neighbors

Last week I had an idea.

I was thinking about Maggie eloping and the possibility of her getting out again.

I want to believe that it can't happen.

But experience has taught me that we have an extremely intelligent and determined little girl and I know that in this case I can really never say never, even though I desperately want to, and it's basically something I work towards every day.

And I kept thinking about that car that I saw on the video that drove past her between the time she left the house and when I left the house.

You see, every time I've met anyone who lives in our neighborhood I've introduced myself and usually within two minutes I bring up the fact that we have a daughter and I explain eloping and how she's pretty determined to elope and I show them a picture and ask them to please, if they ever see her out to try to stop her and if they can't to call the police and come get us as soon as possible, stressing how dangerous the situation is. 

But I know that for some of the people around here now, that conversation, and that glance at that photo on my phone, was now six or twelve months ago, or maybe even two years ago. 

And Maggie doesn't go to school with the other kids in our neighborhood and she doesn't play out on the front lawn, because it isn't fenced and she would run away if she was out there, so our neighbors really don't see that much of her. 

If they saw her walking down the side of the road they might not be sure that it was her. 

And while there are parts of the US where you sometimes see people calling the police on their neighbors for kids being out on their own in the media, I pretty regularly see kids Maggie's age out, walking around without adults, so it wouldn't be that unusual a sight (aside from the fact that she decided to run down the middle of a 55 mph zone). 

So I decided to do something that I hoped would help put her face into our neighbors minds a little more clearly, just in case she does get out. I wanted the wording to be clear and to catch people's attention.

I know that some people will probably read it and make judgements, the way people do in comment boxes on the internet about children who elope every single summer, because this doesn't make clear all that we've done before being driven to this, to keep her safe. 

Paul went door to door to hand them out, and offer explanations this weekend, but a lot of our neighbors who were obviously home didn't come to the door, so he left those in mailboxes.

But I'm hoping that if she does get out again, and if one of our neighbors sees her, that maybe this time, they'll call the police.

We also went by the police station and gave four of these to the police officers and talked with them again, and they took some to take down to the fire station as well.

Here's the finished product, which I made on PicMonkey and had printed on 4x6's at Target (I'll put the script below for anyone who wants to borrow it to make their own):

Hi my name is ___________ and I have autism and I don't have very many words. Sometimes I run away. If you see me out without my mom or dad or grandparents, please don't hesitate to stop me and if you can't call 911 right away. That call could save my life. And then please call my mom at xxx-xxx-xxxx. My dad's number is xxx-xxx-xxxx. Thank you! 

Sunday, September 16, 2018

She Cut Her Own Hair (again)

We had a busy morning yesterday. 

We'd run so many errands. We'd even run by police station and talked to a police officer and handed our some handy little flyers that we're going to be giving to our neighbors that explain Maggie's eloping (that I'll be talking about more here later this week).

And I sat down here to shoot that video to talk about those fliers, because I know there are other kids like Maggie, determined to run, and I thought that the flier idea might help at least a few other parents out there, and also because when I make videos like that I always appreciate the feedback and ideas that are shared in return.

So I was working on videos for the week and looked like something like this when I heard footsteps coming downstairs and Paul opening the door:

He never comes down when I'm filming sit down videos.

And then Patch was there shouting about a mess. And I asked what the mess was and Paul said Maggie's hair.

It quickly came out then that she'd found some scissors. How was not quite clear at first, but the security camera would later clear that who mess up, because we were all quite curious.  You see, these particular scissors had been missing since before Tessie was born, and no one could imagine where they'd come from.

And of course once she found them she chopped off her hair. And her new dolls hair too. For good measure.

I'm just thankful that Tessie's curls are still intact.

The things was, that she actually did a pretty okay this time.

That photo right there, up above this piece of writing is before I even snipped any hair off and started to fix it.

She was upset because she knew she should not have cut her hair and I pretty much spent the entire haircut reassuring her that she wasn't in trouble. She was way harder on herself than anyone else was.

This was her smile once I'd evened it out, when I asked her to smile for the camera. She couldn't quite manage a real Maggie smile. She was still pretty upset about the entire thing.

Oh the adventures we have around here on a lazy (ish) Saturday.

I have to say though, I was pretty impressed that she didn't just hack her hair off right next to her head like she did the last two times that she managed to get ahold of scissors. She's definitely getting better at this whole self hair cut thing.

Which is probably why I could laugh when I was making my video, at least by the end of it.

Saturday, September 15, 2018

My Big Kid

I know I've mentioned this about eighty times already, but this week was James' first week of preschool. And because Tessie already started preschool back in August he is my last kid starting school. 

He was so impatient.

For the last several weeks he has watched his brother and sisters get on the bus and go to school and then he's gotten in the car with me and driven Tessie to her school. And then we've gone and done fun things.

But there were plenty of mornings when the bus arrived and left without him when tears followed because he really, really wanted to go with his brother and sister, despite my promises of a trip to the science museum to see the dinosaurs.

He could not believe that it wasn't his turn yet.

Last year, before I got sick, we used to go to the YMCA tot time every single day. And he loved that. But after I got sick for all those months, we couldn't do that anymore.

He was really sad about that (and so was I... it was one of the hardest parts about that time because I knew how disappointed he was). But because of those hours he spent there I was even more confident that he is super, super ready for preschool and that he would have no problem going on the first day.

The bus arrived the first morning and we ran to meet it because no one had told me that it was now arriving five minutes early because of a schedule change (and it already arrives well before the sun is up here).

I went to lift James onto the first step and he almost began to cry so I set him down on the ground, only to discover that the almost-tears were because he was insisting that he take that first giant step that is almost as big as he is, all by himself.

He absolutely did not want to be lifted up by his mom. He was big enough.

On Thursday, which is the last day of the week for the preschool, I met the bus and lifted him down from the top step, after hearing him turn and say to the bus driver, "Thanks, bye, I love you!" with a huge smile.

Then we went in side and he told me about playing with play dough and about fire drills (he was quite certain that there had been a real fire, but not to worry because the fire fighters had put it out on the roof while they were outside on the grass). His favorite time is lunch time, and his favorite friend is everyone.

I think he's getting the hang of this whole going to preschool thing. He certainly is excited about it.

I made a video of his first day (because of course I did) and my favorite part was capturing how excited he was when he woke up in the morning and I told him that it was his first day of school. I love his little face when he remembered that it was finally his turn.

Friday, September 14, 2018

One Sick Baby

These past couple weeks were not quite how I pictured them.

The kids were supposed to be in school, but that hasn't quite worked out the way it was supposed to, because first Patrick had that horrible case of croup that week, and just as he totally recovered well enough to go to school (on James' first day of preschool ever) Tessie came home from school, took a nap, and woke up with that same horribly sounding cough and I knew that we were in for a rough ride.

I snapped these on Sunday... the day before she started to cough.
Actually I really hoped that we weren't.

With Tessie illness can be hit and miss. I knew she might surprise us all and that she might get sick and it might mean absolutely nothing for her oxygen levels. It has happened before. And when it happens it's a little shocking.

Or she can get sick and it can go in the predictable way, where she has oxygen desats and apneas all night long.

I never know what Tessie being sick might mean. There seems to be no rhyme or reason to her apneas at all.

This time it was somewhere in the middle. It wasn't too bad, but it wasn't good either, until Wednesday morning when her oxygen levels tanked and she dipped down into the seventies for five minutes, of course after Paul left for work. I got out of the shower and rushed over to find both her Owlet and her medical monitor beeping furiously at me, in agreement that her oxygen levels were somewhere between 76 and 78 percent as she slept on wheezily.

As she woke up the levels slowly rose back up over about five minutes until she hit ninety. I turned off the owlet so only one machine could sound off at me.

I waited to call her doctor, remembering how the PICU doctors had told me that they had kids who were in the seventies for a month at a time and how while it's not ideal it's not "that big a deal" for it to happen for five minutes at a time.

I explained to the receptionist who answered what had happened and asked if there was a nurse nearby because in the past sometimes the various doctors who had seen her had simply said that "sometimes this sort of thing happens when apnea babies get sick" so I wasn't really even certain that they would want to see her.

When she was awake she was sort of wheezy, but other than she didn't seem all that sick when she was awake.  I took her temperature and it was normal.

"With those numbers I'm sure he's going to want to see her. Hold on. He's here. I'm going to talk to him and I'll be right back." I held and when she came back she said that she had told him that the numbers were only for a couple of minutes, not five and he'd said to take her straight to the ER right now to get checked out.

"You're sure he didn't say come in to the office so he can listen to her lungs?" I asked hopefully.

"No, he definitely said ER would be better, with those levels." She reassured me.

I sighed and hung up and scooped her out of her up and buckled her into her car seat and we headed in to town, where her oxygen levels were perfect because she was awake, and her lungs are never the problem.

The ER doctor said that it sounded like it was all upper respiratory and that she thought that the low oxygen levels were actually probably from her throat swelling this time and that he desats were not entirely apnea based, so that it wasn't entirely a bad idea to come in, and they gave her a steroid medication, and after that we headed back home, where Tess spent the afternoon and night soundly asleep, without any apneas or desats, thank goodness.

Yesterday she was doing better and today her cough, when she coughs at all, just sound s like a normal little cough and she's back to her curious little self.

And I'm really hoping that next week I don't have any sick kids in the house. Or sick grown ups.

What a week.

And from earlier this week with his super bad cough...

And just because this was such a fun day!

Thursday, September 6, 2018

A Patron Saint of Not Getting Pink Eye?

This morning I was driving Tessie to school and when I tried to take a left on the off ramp to go to her school there was a long line of cars all turning left to get on the freeway.

Because they didn't have a stop sign like I did, they all had the right of way.

Sometimes this can make for a very long wait. Today, it wasn't particularly bad, and it only meant a minute or two of waiting.

After ten seconds Tessie shrieked from the back seat and I glanced in the rear view mirror to see if she was alright. 

Before I could even ask her brothers, who sit on either side of her, if anything had happened, she let me know exactly what was wrong by chanting "Go! Go! Go! Go!" in an urgent little voice. 

When Maggie was Tessie's age she used "Come on" as a catch all phrase to let me know what she wanted. I had never realized exactly how flexible "come on" was in expressing various wants and needs from "hurry up" to "I want that" to "come with me" to really basically anything, until Maggie began to use it that way when she was a little younger than Tessie is now.

Tessie uses "Go" in much the same way now.

It is especially appropriate when she's exercising her skills as a back seat driver.

Meanwhile James likes to work part time as an actual backseat driver by telling me when he thinks I am going the wrong way.

"Mom, is this really the way to the park? Are you sure mom? Really? I thought it was that way?" Is not an uncommon refrain from the back seat.

He's lucky he's so cute.

We got a call from the preschool yesterday that they have a spot for him in the full day program.

He's turning four and will be in the young five's kindergarten class next year, so this will be his only year of preschool.

Before this they only had a spot for him in the afternoon class, which meant quite a bit of extra driving (from Tessie's class to James' class and back, whereas now I have the option at least of staying in town after I drop Tessie off to save gas, or of coming back home).

He is extremely excited about the idea of getting on the bus with Sadie and Patrick on Monday morning to go to school.

Patrick on the other hand has been home all week long.  

I wasn't sure on Tuesday if he was really sick enough to miss school... but I kept him home, erring the side of caution since he did have a little fever. 

Yesterday it became clear that it was a good thing we hadn't sent him because he not only has croup, with the scariest sounding cough I've ever heard (he has what the doctor called "stridor") but he also has "adenoviral pharyngoconjunctivitis," which caused me to look at the boy and say "did we not just have a conversation in the car on Sunday in which I told everyone that no kids are allowed to get pink eye this year?!?!?!" after the ten rounds of pink eye that went through our house last year!!!"

The doctor said it wasn't quite the same, because the conjunctivitis part is part of the entire other virus but that he would have everyone wash their hands a lot.

Basically, with a five, and three, and two year old, we're goners.

I cannot even tell you how much hand washing and hand sanitizing and bleaching and disinfecting went on last year, all day, every day... and there was still so much pink eye.

Is there a patron saint of not getting pink eye?

Because if there is I think that needs to be my patron saint for the 2018- 2019 school year. I need to get their medal and hang it about my neck, post their statue in a prominent place in my home and start saying novenas.

Let's face it, the hand washing thing did nothing for us last year.

Or maybe we would have had like twenty rounds of it instead of ten, without all that.


And in totally random news.... this took a very long time to make.

Sadie was very excited to show off her backpack and Maggie's backpack.

I made this video (or half of it) the night Tessie was admitted to the PICU. And midway through I had to stop and jump up and rush her the hospital and I finished it the next day when we got home and the life got busy and last night I finally finished editing it.

It's a little ridiculous in how excessive it is, but it was also kind of nice to see the kids spoiled after a couple years of uniforms:

Monday, September 3, 2018

She Ran Away

There was something that I was going to write about yesterday.

But today I keep trying to think back and I can't even remember what it was.

Instead I just keep picturing this, and I keep going back in my head to the moment in Home Depot when I decided to buy these cameras and how after all the locks and everything else we'd done it seemed like it was a little over the top.

I know this isn't yesterday. I just love this photo of her running so much.
And whenever she elopes it seems like it fits. A little.
She'd only gotten through the front door lock twice, but we were taking extra precautions.

And she'd never ever gotten past the window locks.

She'd never even tried them.

It was like the windows weren't for leaving the house and so she left them alone.

Until yesterday.

Yesterday we had a fun day.

We went to Mass and it went amazingly well for the first time all summer.

We went to my parents house and had hot dogs and fruit and potato salad and ice cream and played in the sun room and laughed and laughed and laughed.

Then we came home and Paul and the kids went downstairs into the basement playroom to watch a movie, where it's always cooler than the rest of the house, and I got to work on dinner.

When I got the alert, that someone was on the front porch, I thought that it was the wind, moving one of my plant baskets.

I'd gotten that alert maybe twenty time already because the past few days had been so windy and the baskets are at roughly head height and it confuses the doorbell camera a bit.

I don't mind, I glance down, and I can see in the thumb nail that no one is there.

But this time, as I made a tuna pasta, I looked down and saw the silhouette of a small girl in a blue and red mermaid dress. 

I thought that surely somehow she'd unlocked the front door, so I didn't grab my keys off the counter where they had been inches from my hand.

I just flew to the door. 

But when I got there it was locked.

I turned. Confused.

Was she still in the house?

Was someone else outside?

No. That had been Maggie on the video?

All those thoughts in maybe two seconds.

She already had a thirty second head start on me, according to the surveillance footage.

I turned and saw the window open, the screen gone.

And I threw myself through it and ran.

My sandals made me feel so much slower than my boots and tennis shoes, but I sprinted, catching sight of her as she turned onto the frontage road, and taking a short cut, between our neighbors houses as I watched her run onto a street where cars regularly travel 55-65 miles per hour around corners.

I was looking up and down the road, yelling for her, not sure if I could outrun her.

She regularly outruns paras, who are wearing sneakers, when she's insisted on wearing her little high heels. And she was not wearing her high heels today.

Then she heard me and turned and fell onto the road. And she started to laugh. It was the best game.

I caught her and took her hand and didn't say a word, per her therapist's instructions (in case she's running for attention... although I think it's part sensory and part because she thinks of it as a game of some sort), as I choked back tears and hysteria and led her back to the house where Paul and the kids hadn't heard me yelling for him as I hurled myself through the window.

Then I called him on his phone and he let us back in and took Maggie's hand and I basically collapsed on the porch and then re-walked the route that she had run, because I needed to.

And I went back over the footage to see exactly what had happened.

You see, I'd thought of our living room as totally secure. I thought of it as totally child proof. And that's why she was allowed to be in there for those four minutes by herself (again she was fifteen feet from me and I could hear her and she was being pretty quiet and didn't seem to be getting into trouble).

And that is all that it took.

And then I pieced it together because I think that people need to see and understand how eloping happens. How careful you need to be when you have a child that elopes and how sometimes it can feel like it takes superhuman strength and determination to keep them safe.

This video has the surveillance footage of Maggie eloping and me chasing after her. I have watched it so many times now.

It could definitely be upsetting for some, but just know that she is totally fine. The system worked as it was designed to (although I wish it hadn't gotten to our last line of defense, and we've now locked down the windows so they no longer open).

And thank God and Maggie's guardian angel who works overtime that the child is safe.

She certainly keeps us on our toes.

Friday, August 31, 2018

Tessie's First Week of School

I didn't think that this week would come for a couple more years, or at least that it wouldn't arrive for another year at the earliest. 

But then Tessie was accepted into an amazing preschool program. 

There are around a half dozen kids in her class who are on the spectrum. The youngest are two, and they go all the way up to five (those who are going into kindergarten next year). Each child has a therapy tech assigned to them for a few weeks at a time, so stays with them for the entire day. The techs rotate throughout the year, so that they all work with the kids.

This class is in a preschool with neurotypical kids and the neurotypical kids are also taught how to interact with kids with who aren't neurotypical. And it's sort of wonderful.

I first heard about the program, which is through our local university, early this year and then I went and read about it online, and then emailed to learn more, which was followed by phone calls and finally a tour to come in and see the facility with Tessie.

After going in I was so impressed with what I saw, that after an evaluation, when we were offered a spot, we enthusiastically accepted.

And that led us to this week.

And finally the first day of school arrived.

By the second day Tessie raced down the hallway, not looking back to see if I was there.

By the third day, when Nani and Bopa drove her because I had an appointment with James she said "uh oh, uh oh, uh oh" when they went in a direction down a road that she didn't think that they should be driving down, until they were back on a route that she recognized (I feel like she learned that one from a certain big sister).

But I was the most surprised by the phone call I got on the first day, when her therapist called to tell me that they just wanted me to know that they were putting her monitor on her and putting her down for a nap on a cot, because she was acting like she was tired.

I'd been certain that she wouldn't take naps at school, because she hardly takes them at home anymore, and has barely napped all summer.

She's certain that if she falls asleep, she's going to miss something exciting.

Sure enough when I picked her up I was told that she'd taken a nap and had woken up refreshed and ready to play.

I couldn't believe she'd gone to sleep somewhere other than our house. She won't even fall asleep when it's nap time at Nani and Bopa's house!

Yesterday I stopped by her school early for a meeting during school hours with all the other parents, to meet all the staff that we hadn't yet met.

Tessie was in a mood, a tech explained as I heard her come hollering loudly down a hallway in a herd of children.

There were two reasons, her therapist told me with a reassuring smile.

The first was that she wanted to be carried everywhere and they were asking her two walk like a big girl. She was not happy about that development.

The second was that if she was going to lay down to take a nap they asked that she lay down on her cot, not in the middle of the classroom where the other kids were working. Or she could go to the play area to play and do whatever she wanted over there.

Tessie wanted to sleep where she wanted to sleep, which apparently was not on her cot.

She was so furious that she stormed past me when I bent right next to her and said hello and didn't notice me until I leaned over and kissed her on the cheek after she'd settled down at a table and had started playing with some Duplo blocks and a tiny doll.

Then she looked up, shocked, and smiled and then pushed her forehead up against my face so that I could kiss her a second time.

And then when we left she made it exceedingly clear that she still expected to be carried.

Because at home she's definitely still the littlest and she's not quiet ready to just hold my hand and walk next to me like the big kids.

The best part of her morning, on her last day of the week, was when she got dressed.

As I slipped one of her new dresses over her head I told her that she looked like a princess.

She was absolutely delighted.

She is definitely following in the footsteps of her two older sisters in that regard.

And once she came home from school, without so much as a nap in the car, she was ready to go outside in the backyard, and run wild with the two boys, and Sadie.

And then she slipped quietly inside with Sadie and I found her fast asleep next to the couch, still wrapped in a rainbow of tulle, completely worn out from a wonderful, busy week.

The high point for me came midway through the week and I wanted to write it down before I forget.

On Wednesday when I was picking her up I paused to speak with her tech and Tessie fought to get down out of my arms.

She could see her siblings about fifty feet away on the school playground.

So I put her down. And I watched as she raced over to them.

Halfway there she stopped and turned and looked back at me. Then she turned back around and ran over to where they were playing and joined them and when she reached them she turned a second time and checked to make sure that I was still there.

I'm really hoping that this is a sign that she isn't going to be a runner and that maybe eloping won't be here thing.

Maggie never turned and looked and never checked to see if I was still there, she would just run and run and run (at that age I think she would have blown right past the kids playing).

So here's hoping that all these security measure we've put in place are only for one little runner and not two.

And now for a couple school related videos of my not so big girl:

Saturday, August 25, 2018

Building a Small Fortress

As Maggie becomes more and more of a security system overcoming genius our house becomes more and more like Fort Knox. 

I'm not sure exactly when the idea of a motion sensing doorbell came to me, probably around the time she managed to make it past the double cylinder lock, one day (long story) and made it halfway up the road before we caught her, cheerfully skipping towards the highway, laughing hysterically at her own cleverness.

I thought to myself, we need an alarm. And then while looking at alarms online I saw cameras with motion sensors and said "that's not a bad idea either."

Why not both? 

So I went to Home Depot and the salesman convinced me that the Nest Hello was much better than the Ring (which he had in his home) and I believed him enough to buy it and while I don't post all of my videos over here anymore, this video is possibly the clearest glimpse into what life and actually like while trying to do anything at any moment is around here so, I decided to share it.

I actually did edit out a meltdown out of the middle of the footage, because I don't show meltdowns, anywhere, but other than that, it's a pretty accurate look at a small portion of our afternoon and the sort of fun chaos of trying to get anything done around here.

And I'm also pretty pleased that I actually got that doorbell to work, despite the very discouraging website and app that tried to convince me to hire a professional to do it for me.

It was way easier than installing the garbage disposal.

We did not need professional help.

Then there was this. This is one of my all time favorite vlog posts.

I made it a couple of weeks ago and meant to share it over here right before life got so hectic that I didn't post for over a week. But it goes into why I started posting on Youtube and why I've put so much energy into my channel, for anyone who's wondered and it talks a bit about the start of this blog too and how it grew and evolved and ultimately led to vlogging.

Someone in the house had a big birthday and the best part of the birthday was the best candle that I have ever seen. Who knew that birthday candles can sometimes spin and sing and light up like a firecracker?

Or that if you light off one of those things it might not stop singing for an entire week even after the kids dissect it in the backyard?

And I thought that I posted this last week above the second video but it didn't paste into place. So I'm putting it right here because it should be down below in the post from a few days ago but somehow it isn't.

Some of you probably know some of my reasons, but for anyone who's ever wondered this goes into my rather emotional journey.

This was seriously the hardest school choice for me to come to terms with (I won't say us because everyone else around here was basically totally okay with it). And this is how it happened:

Now we have nearly survived these three weeks without school for a certain routine and school loving someone.

Next week holds so many new adventures. And I am still hoping to get a blog post up after the failure to get much writing done in the last two super hectic, rather stressful weeks.

Now to close this post in hopes to actually get a little bit of that writing done now!

Monday, August 20, 2018

A Trip to the PICU

This weekend was not the weekend that I expected.

I imagine a lot of us are feeling that way about this entire week, this entire month maybe. 

I keep thinking that I have to say something about all of that, as soon as I catch my breath from all of this. If I ever catch my breath from all of this. 

I'm hoping to catch my breath from all of this "real life stuff" sometime next week when school starts and suddenly my house is very quiet for at least three hours a day, when five people of varying small sizes are at school. 

But between all this gene stuff, which has thrown me off more than I can say, and a weekend spent partially in the pediatric intensive care unit, I have very few words left for anything beyond my small sphere. 

Tessie has decided that breathing all that much is not all the important to her and so Paul and I spent a great deal of the weekend encouraging her to do more breathing, or to breath more deeply, or to just wake up.

She is not a fan of waking when she's asleep, which even the intensive care doctors discovered when a blood test did not wake her and prying her eyes open and shining lights in them did not wake her.

This toddler can sleep through just about anything.

Oxygen desats into the 70s (and later below 70) is what landed her in the PICU for observation. It was good that we went though because I was able to ask the team there during rounds lots and lots of questions about exactly how to handle it when it happens again.

And when it happened again, happened to be the next day, when she turned blue from that 69% desat ( I did talk to her doctor and he did talk to the PICU and they decided that we'd handled it and that she didn't need to come back in...although I was certainly ready to pile her back into the care when I saw she'd gone below 70%).

And of course t means going back to pulmonology.

I called genetics this morning and got the name of the pulmonologist that is the best with genetic conditions, and her geneticist assured me that now that we have her genetic results they're going to treat her very differently at her appointments than they did prior to the test results coming in, when everything was sort of blown off and excused as "prematurity" and something she'd outgrow.

Whether or that means that the threat to the monitor is gone forever remains to be seen.

I remain skeptical after everything that's already happened.

And because I haven't shared this here yet, here are the two videos where I talk about our school experiences and choices and how we ended up where we ended up.

My big conclusion is that every family has to figure out what the best fit is for their individual children. And that isn't always easy.

The second one was a little bit hard to make, because the experience wasn't exactly easy (and when I made it I realized that I still feel a teensy bit angry about everything that went down).

But I think it's turned out alright. More than alright.

It just took a little bit of time to figure out where we belonged.

And that is that.

I'm trying to get back into the swing of things and I should have more time in the very near future.

Things just really need to calm down around here. And if that toddler could just keep breathing and stop desatting that would be a big help!

Wednesday, August 8, 2018

Shopping May Have Just Gotten A Little More Difficult

So here's the story.

For our first two girls when we went to the store when they were small, they just wouldn't ask for things. Ever. It just didn't seem to occur to them that it was possible, even when they were asked what they wanted (and it would make parenting Patrick, the child who commercials were made for, kind of a shock to the system).

It was not what I expected parenting to be like.

Where were those epic tantrums in the toy or candy aisles? 

Okay I wasn't really asking that question. Because we were still in a world where sensory meltdowns were a distinct possibility, just not usually in the grocery store. 

My worries were usually more along the lines of her eloping across the parking lot if I didn't get her into her car seat fast enough.

So when Maggie has asked for something I have said yes. Every time.

This is because it is an extremely rare event and I wanted to encourage her to ask me for what she wanted in stores more than once a year.

When I started making this video I was talking about how happy I was that she asked for this really silly pool float that she saw and about how she said "Need it! NEED it." in a very passionate, very serious tone.

And then before I could edit the video we went shopping again, because Patrick had money from taking care of some cats burning a hole in his pocket and was he was dying to visit the toy section in Walmart, when suddenly several years of practicing asking for things just about every day clicked into place.

It is one thing to ask for things in therapy, but that doesn't always "generalize" or cross over into everyday life quickly or easily.

Yesterday it did when Mae suddenly started asking for everything in the store from soup to cheese puffs to mermaid dolls to Minnie Mouse. She wanted everything she laid eyes on after never really seeming to have noticed it before.

And suddenly I found myself saying no a whole lot.

And it was wonderful and stressful at the exact same time, as some milestones just happen to be.

She is amazing.

I think shopping may have just got a little more difficult though.

Tuesday, August 7, 2018

A Whole Bunch of Stuff Happened

Sadie has returned to us, after traipsing all over the west coast of the US.

She was gone for two whole weeks and we missed her so much.

But she had so much fun.

Although at times it was a little bit scary because there was not one, but two fires that were a little closer than I, a worried mom on the other side of the country, would have liked.

But Nani and Bopa kept her safe and returned her in one piece.

And she even got to have deep fried artichoke hearts.


And while she was there she vlogged, and last night I finally got a chance to look at the footage of all her fun and put it together into a video of all the fun that she had while she was out with Nani and Bopa seeing the world!

And while I have been here, not blogging, because apparently not blogging is what I do while I'm waiting to hear about insurance news and I'm more than a little stressed about all that but also trying really, really hard not to drive doctors completely crazy by calling to see if there's any news on the "will the other kids be tested soon" front (deep breaths) I have been vlogging.

Because talking to a camera is apparently something I'm kind of okay at when I'm stressed.

Who knew?

I made this over a week ago and finally got it up and edited, summing up something I've said before and will probably say again, but that I haven't said in a while.

And on a totally different note I warned the boys that they were about to get drenched.

And then it happened.

Wednesday, August 1, 2018

It Made My Life Easier

As you guys know if you've been around here long I don't do a ton of product reviews (and that isn't about to change) but every once in a while I find a company and a product that makes my life easy enough that I really want to share it with you. 

Before I received a Hie Changing Pod to review I'd been a fan of the company on social media and watched videos of their diapers bags and changing pods and so I jumped at the chance to try out one of the Changing Pods and see how it worked. 

And for the last month I gave it a rather strenuous workout. It went everywhere outside the house with me. 

And it was perfect. As someone who doesn't love carrying a huge diaper bag with me, it became a lifesaver, living in the car, waiting to be strapped to the handle bars of the stroller with everything I needed for emergency diaper changes. 

I knew it always with me with everything that I needed, and it even had enough room for an extra outfit for Tess. 

So I am definitely a fan. 

And I have never had so much making a review video, probably because it involved a lot of running around with Tessie and Tessie awfully cute and when we were making this video she was being pretty giggly! 


Tuesday, July 31, 2018

Finally Better

I spent hours Saturday and Sunday typing a post.

It is enormous. And an actual blog post. With thoughts and not just updates.

But it isn't done yet despite like seven hours of work and rereading and reworking and agonizing over for four days. It is coming though (and now that I've written about it here it has to be, right? Although probably somewhat anticlimactically, like, that's it? That's what you worked so hard on? Anyways...).

I have good news. My back doctor, just before completing her residency and moving on to bigger and better things, referred me to another doctor who she thought might be able to figure out what the heck was going on with me and why I'd been sick for the last eight months.

And she was right. After five days of taking the pills that he told me to order online the pain I've been in for eight months is almost gone.

I was so skeptical when I went to see him.

So, so skeptical you guys.

I'll put the spoilers down below for anyone who wants a basic outline and not the whole story in the video.

Basically after going over my health history (all the tests I'd had done just showed inflammation) with this particular osteopath he noticed I'd been on antibiotics for five months for my kidneys when I was pregnant with Tess.

He asked if I'd taken probiotics and I said I had and he asked what kind and I said just the kind from the super market (super market brand basically). And he nodded and noted that each time I had taken antibiotics when the kids and I had strep I'd felt better for a week and then got sick again.

And he said he thought that those five months two years ago had wiped out everything good and that that was why I was sick now and that I needed to be on some super super strong probiotics.

After five days on them the pain is almost gone completely. It is amazing. Because I had tried probiotics before I didn't think it would really make that big of a difference. 

It totally has. My stomach isn't totally back to normal but it also doesn't feel like I'm being punched in the back constantly and I can actually eat food without feeling like I'm dying.

So... that's amazing. 

I am so relieved. 

Thank you to everyone who prayed for us. I needed this. I need to be 100% to keep up with Maggie especially... and now I'm closer to being there.

Thursday, July 26, 2018

Peace of Mind

So I know this looks like a review and unboxing video.

But it's so much more.

Because in it I go into how we got from those first days when we saw Tessie not breathing to yesterday when this little box arrived in the mail and I sat down and opened it. And how we went from there to actually feeling peaceful with what might happen if she does someday lose her monitor.

And you guys I know you don't all have the time to watch this so here's a spoiler (skip the next paragraph if you don't want to know how it turns out).

I put on the Owlet with Tessie's medical monitor and the numbers were identical. They went up and down together at the same time. 

And I know that's how it should work but to me that feels like a tiny miracle.

I woke up and checked her numbers and felt so much more at peace than I had in a very long time.

Now if she loses her monitor (which she shouldn't, but still... there have been a lot of shouldn'ts and I just can't trust that she won't) we have this.