Saturday, September 29, 2018

Thinking About Running

This week was tough in a lot of ways.

As a mom of a kid who elopes it always hits me hard when I see that child with autism has disappeared, even when they're on the other side of the country. 

I always find myself half holding my breath, checking my phone for updates, praying for good news, knowing that as the hours slip into days, the chances of the outcome being good becomes less and less likely. 


It is always very, very much in the front of my mind, during these times, how close we came to being exactly in one of those tragic situations.

I am always excruciatingly aware that it very nearly was us, despite everything we had and have done to try to keep her safe from her seemingly inexhaustible drive to run.

And after this week I just needed to talk about it.

And I had a little extra inspiration.


I know that in the past I haven't been the best at dealing with hate comments.

I feel like I've actually improved my handling of them, because after a decade I've finally gotten to the point where, for the most part, they don't upset me anymore.

I basically have a one strike policy, where I delete and hide from the channel any person who leaves a hate comment, largely because I want my comment section to be free from that sort of thing.  There aren't really any second chances over there because I don't really have time for that.

And I knew when I made a couple of the videos about eloping that there was a fair chance that they were going to attract those sorts of comments because people just don't get it sometimes.

I've actually been pleasantly surprised by how amazing 99% of the people I've been interacting with through my videos are.

I expected Youtube to be a little bit of a rougher place (and the blog prepared me for it better than I expected).

However I did get a few comments and they actually inspired this video. Because one of the main points of my vlog is to help educate people about misconceptions about autism. And there were so many glaring misconceptions that I decided to take the awesome opportunity that the commenter was offering me and put it to good use.

Now here's hoping that Tessie is part of that 52% of kids with autism that don't elope... I'm hoping that the odds really are in my favor on that one.




Thursday, September 27, 2018

A Big Change in Routine

One of the things that I really didn't need to happen this week happened and after putting over a hundred thousand miles on my van it finally started to have problems.

And I made a decision that I probably should not have made. It had overheated once and Paul put radiator fluid in it, because the night before the light had come on, on the way home, and he thought that might have been what was needed. 

I was midway between two towns, with Maggie in the car, in the middle of basically nowhere, with ten miles to go and the car was beeping at me to let me know that it was hot again. But it was still running. 

The little light was on saying it was hot one minute and then it went off and the thermostat went down to cold. And it was a cool day. Was the car really that hot?

So I drove the ten miles into town and went straight to the mechanic's shop. 

I couldn't quite make the turn off the freeway, so I turned into the Arby's next door which has a connected parking lot.

And that was where my car died. 

Maggie was frantic behind me, because we were very, very off schedule (she was with me to begin with, because her school had a late start, so that wasn't totally my fault). And so after a moment and a prayer I turned the key and the car started and I drove it twenty feet to the mechanic, quickly turned it off and ran inside with Maggie beside me, and told them everything that had happened.


Then we left and walked to get donuts, to burn a little more time, because it was an hour and a half still until school started, then we slowly walked just about a mile and a half, since we didn't quite go directly there because there weren't many cross walks, in order to get to her school.

The car news came back slowly. First it was the thermostat, serpentine belt, and some tubing with a name I can't remember.

Then once that was hooked up the bad news came back. 

The head gasket was cracked because I'd driven the car and it had gotten to hot (I think that was probably said twenty times in the last two days while the mechanics explained what we were looking at) and the car would either need the engine taken apart and rebuilt or a "new to us" engine, which would cost roughly the same amount.

After conversations with Paul and Bopa, the new to us engine was agreed upon and the car will be back sometime next week. 

Sigh.  

What a week. Maggie did handle the change in routine admirably well once we got out of the auto shop though.

Tuesday, September 25, 2018

A New Way to Communicate

Tessie has been working on learning how to use a PECS board at school.

A PECS board is a Picture Exchange Communication System and for Tessie it's basically a board that has little cards on it, that at this point is mostly made up of things that she wants or uses during the day. 

They've been beginning to teach her how to use it, and this week it really clicked when she realized that if she walked across the room and picked up the ice cream card and brought it to her therapist she could have a bite of ice cream.  

Yesterday she took twelve whole steps to get that card and brought it twelve whole steps back to communicate what she wanted.


She's willing to do quite a bit to get ice cream.

And she's starting to realize what exactly the board is for and how it's used.

And that's pretty awesome too.


Monday, September 24, 2018

The 12 Year Anniversary

This weekend was our twelve year wedding anniversary, which means that it has also been exactly 13 years since our first date.

And in honor of our anniversary I decided to put together our notoriously bad family photos (if we had good ones I would of course use those, but this is our family, so... we'll use what we've got) because a lot has happened in the last twelve years and sometimes it's fun to look back.

2006
For those who haven't been along long enough to know, if Paul's hair isn't super short, he has pretty fantastic curls.

2007
Okay, this one is actually one of my favorites.

Everyone is looking at the camera. Pretty good for us.

2008
And I love this one.

Things didn't really go south in the family photo department until a bit later.

2009
I guess around 2010.

Sadie didn't stand still long enough to join us in this one.

2010
At this moment Paul was just about to jump in the truck to head to Ave.

2011
And in this we were spending our last day in Florida on our way up to Michigan!

2012
Here the girls (and Patch-o-saurus) were trick-or-treating at the law school!

2013
 And in this one we were visiting California!

2014

2015
 I searched everywhere for a family photo from 2016 and I'm convinced that one does not exist. In fact this was the only photo with Paul and I both in it that I could find.

He was not on board with my pre c-section selfie.

2016
2017 was apparently not a great year for family photos (and looking at the camera) either.

2017
 But this is one of my all time favorites. Even if very few people are actually looking at the camera.

Because look at those smiles.

2018
And that brings us to the twelve year anniversary lunch.

It isn't always easy taking our bunch out to eat, but we went to the restaurant that Paul worked at during law school during a slow time, and they put us in a little space that is perfect for our family, and it worked out really well, even if it was a teensy bit chaotic at times.

Because yes, that totally qualifies as a "teensy bit" chaotic around here.




Sunday, September 23, 2018

An Educational Autism Evaluation

This past week all of the evaluations for Tessie's educational evaluation for an autism diagnosis were finished up. 

For anyone who hasn't gone the diagnosis process, an educational diagnosis for autism is different than a medical diagnosis. There are different tests and different criteria for these two autism diagnoses.

And that means that child can qualify for a medical diagnosis and therapies and not qualify for an educational diagnosis and supports at school. Which can be pretty frustrating for parents who are watching a child struggle. 

Or so I've heard.

I don't really have personal experience with what it's like to get one and not the other, because one of the positives of having a child with a rather extensive communication disability is that no one is really going to question whether or not supports are necessary (at least not once they met her, before they met her that question was asked quite a bit). 

When you have a large communication delay it's pretty obvious, at every turn that the supports are necessary.


So in the last month and a half Tessie went through the evaluations with an occupational therapist, and speech therapist, a psychologist, a social worker, her special education teacher that she sees every week, and someone else that I'm certain that I'm forgetting.

And when the results came back it was a long list that pinpointed where she was developmentally.

Like Maggie she had one area where she shone, and was measuring far ahead of her age's expectations: gross motor skills.

All the other areas showed her measuring behind, sometimes in the eight month old range, or twelve month old range, or in areas where she was a bit stronger, in the eighteen month range.

As a kid who is just about 26 months, those numbers aren't impressive, but they are an improvement over where she was at 18 months, and as we went over the evaluations we could already see places where she had improved in the past month and that was pretty amazing.


So that is where we are at the moment.

Her educational diagnosis is good for three years and means she's eligible for more supports during that time.

And who knows where she'll be at the end of those three years, when she's going into kindergarten.

I'm excited to go on this journey with her, with these supports that I'm so thankful that we have in place from such a young age, and I can't wait to see what she surprises us with next!

Saturday, September 22, 2018

Jackets and Awesome Things Tessie Can Say

I had one goal on Friday morning.

Make it to the Once Upon a Child jacket sale early enough so that I could get through the line and get all five kids jackets and boots (and maybe a few hats and mittens too), in time to get Tessie to OT and Speech at 10:30.

The jacket event opened at 9:00 and I knew that sometimes lines at the various special events at OUAC can get a little bit on the long side because a lot of people turn out for good deals, and so I wasn't sure if we'd actually get to go shopping. If there were too many people to make it back to the other side of town we'd have to call it a day.

But thankfully, we got there five minutes after the store opened, and while it was busy, the line moved quickly, and James helped me find jackets for each of the kids (while Tessie honed her escape artist skills in the stroller). 


I promised myself that I was limited to on jacket per kid this year (instead of being sucked in by the deals and getting rain jackets, and cold jackets) and I was mostly fine until I made it to the little tiny girl section and Tessie's size. 

Tiny Tessie jackets on sale are apparently my weakness. 

We also found her a tiny pair of Frozen boots, which she let me put on her feet when we got home (I was not sure how snow boots were going to go over, so that totally made my day), and which she proceeded to stomp around the backyard in, completely making my Friday awesome. 


But really I'm just relieved that I've checked this off my list of things that I needed to do sooner rather than later this year. 

Because today there was a chill in the air and even though we've been having lots of hot days, it won't be too much longer before winter will be on it's way. 


And we did make it to OT and Speech on time, where Tessie was a rock star. 

When we walked in the front door she was actually saying "I go! I go!" over and over again to me, which is pretty amazing.

My baby is getting so big! 

Friday, September 21, 2018

Spark for Autism Study at Home

Somewhere right near the top of my to do list these past few weeks has been the Spark for Autism box sitting on my book shelf. 

I needed to get Sadie and James to give DNA samples (of saliva) so that I could send it back) but in the first few whirlwind weeks of school there always seemed to be something urgent to do first, whenever I thought I might have time to sit them down and actually do it.

It doesn't take long. 

You need to have not had anything to eat or drink in half an hour. And then you need to spit in a little vial and you screw the top on and put it in a little bag and pop it in the box that they send it with. The postage is already on it, and off it goes. 

If you fill out the surveys that they'll give you access to online, after they get the samples, you can even get a $25 Amazon gift card, which isn't a bad deal at all (especially if it's something that you were interested in doing anyways). 


In our case, we were interested in becoming involved in the Spark autism study because we feel like it's pretty likely that there are genetic reasons for the developmental differences around here and Spark has created this huge data base, so that scientists from all over can use the information that they collect (which isn't linked to the names of the people that they get it from).



The hard part was getting a sample from Tessie.

I am really thankful that we went in for that and had the help of the people who work with Spark for that part (and one of the people helping us happened to be the person who helped train me in a type of therapy/communication with Maggie when she was first diagnosed five years ago next month, which was pretty great, especially since Maggie definitely seemed to remember her). 

But basically to get the sample from Tessie we had to swab her tiny cheeks over and over again and then ring the swab out in the special tube until there was enough there for the test.

Maggie on the other hand, once she realized she wasn't having a blood test done (because she'd heard "DNA" and assumed that meant blood) was enthusiastic about the whole thing because she was so relieved that it wasn't a blood test. 

She even asked her once if we were at the dentist. 


The kids and I made a video showing how easy it was to take the samples and tomorrow we'll pop them back in the mail and send them on their way back to Spark!

Thursday, September 20, 2018

Patrick and the Chewable Dinosaur Necklace

It's funny because when Maggie was first diagnosed with autism I probably bought every single sensory thing that I could find and she broke most of them within a few days, and really didn't care for any of them particularly much.

The things that she loved were never things that were designed for kids on the spectrum. They were usually some wonderful random thing that had caught her eye, like the shiny red boots that she got for Halloween when she was three (and wore through three pairs of), or some tiny red ball or small block that she would hold in her hand and carry around all day as if she'd found a tiny treasure.


As a result of my experience with Maggie, it had been a while since I had really looked at items designed for kids with sensory needs. 

But a few months ago a certain five year old began destroying the collars of his shirts by chewing on them and no amount of reminding him to stop really did anything. 

Of all of my kids I would say he has the least sensory processing... quirks... while a certain three year old who only finally made his peace with socks last month very likely has the most. 

The shirt thing though, was driving me up the wall. And it reminded me that chewable necklaces exist and that maybe they would be useful in this situation.

So Patch and I sat down and went through the chewable necklaces on Amazon and he found one that he really, really liked a lot (affiliate link here, although apparently the blue is sold out at the moment) and a few days later it arrived and it quickly replaced the collars of his shirts for his favorite thing to bite. 

He is definitely a fan.        


And here's his favorite necklace after a day of being worn.


And because Patrick never passes up the chance to make a video and talk and talk and talk on camera, here's the video that he was so very excited to make about his necklace.

He's such a funny kid:




After watching the video while I was making it James was so convinced that the necklaces are the coolest thing ever that there is now a green dragon chewable necklace on the way to our house too.

And I may be hushing his older brother every time he opens his mouth to suggest that he's copying him.

Wednesday, September 19, 2018

A Sleep Study- But Not with the Kid You Think

First I want to start by thanking everyone who left kind and supportive comments or said a prayer yesterday or today. It means more to me than you guys know and I'm going to reply to each and every comment.

I've been brainstorming and thinking and I'm definitely feeling better today, and I have some ideas about how to move forward reaching those neighbors that we still haven't gotten ahold of yet.


The last twenty four hours have been a little more hectic than I expected, because a certain 10 year old who spent Monday night with me at the Children's Hospital an hour and a half away, for a last minute scheduled sleep study, ended up coming down with a stomach bug this morning.

Because this child never, ever complains about being sick, even when she is horribly sick, I knew that when she said she had "a pretty bad stomach ache" to take it seriously and tell her she was not setting foot on the school bus, lest I receive a seriously bad phone call from the office later in the day.

She had a sleep study because her doctor decided that, if the insurance company was going to refuse to do the genetic test to see if she has the same gene mutations as Tessie, she could at least do a sleep study to see if she was in immediate danger from the sleep condition that Tessie has (when Sadie was little I told her doctor that she'd turned blue and stopped breathing and he told me I was a paranoid first time mother with a very pale child that probably just looked blue sometimes because of her paleness... so that, with the gene that she has a 25% chance of having, is also the reason for the concern).

So we ended up at the hospital and we haven't heard anything yet, which I think has to be somewhat good news, because if it was anything very bad we would have heard back yesterday (when they put Tessie on oxygen they called us the same day).

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.

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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: