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!