Thursday, May 31, 2018

Splash Pad Fun

We had another hot day followed by a stormy night.  The weatherman said that it was the weakened (no longer a hurricane) storm Alberto moving past us, which kind of makes sense because when we arrived home from gymnastics and unloaded the car we were all soaked to the bone in moments sprinting from the car to the garage, then the storm stopped abruptly, then a few hours later, it started again, with winds and rain that had the dog terrified and whimpering (and finally hiding in the basement).

But we've definitely been looking for ways to beat the heat and one day this week we did that by going to the splash park and having a pool party on the back deck!

Wednesday, May 30, 2018

Are You?... The Question I Wish People Wouldn't Ask!

I had fun telling these stories. And I'm going to blog a little because I'm at the library, by myself, praying that the air conditioning on my car is fixed today, and because for once, I have time since I don't have the little boys here with me.

It was far more fun telling these stories yesterday, the second time around, than it was experiencing them first hand.

Some time after Maggie was born (okay very shortly after Maggie was born) people started asking me, not infrequently, if I was pregnant, when I wasn't.

It wasn't diastasis recti (which I can always read and write but maybe not pronounce correctly), since I had my doctor check and (miraculously?) have no separation (last time I talked about this at least a half dozen people suggested that so I thought I'd start there).

It was just that my muscles... aren't in the same shape that they were many, many pregnancies ago. Which I'm okay with, but which has caused some awkward moments that sometimes feel all the more awkward since I end up being the one comforting the totally embarrassed person who's just said something that probably shouldn't have been said.

It's not that people I know or family members are asking. That's different. Then there's at least a relationship and since I have been pregnant pretty often for the past ten years there's a basis other than the state of my abdomen that's the reason that they're asking.That's not what I'm talking about here.

What I'm talking about here are the inquiries from complete and total strangers who want to know about my little bun in the over.

Or worse (small town life and all, although this story is from before we moved and not now) the rumors that can be started by sagging muscles and people who just won't be convinced otherwise. because they think you're just waiting out the first trimester to tell everyone.

For those who prefer print to video I'll share one of the stories from today's vlog (I may have blogged about it years ago, but since almost eight years have passed I think it's fair game again).

When Maggie was about a month old I went shopping.  Maggie was with me. Sadie was with me. I was at the store that Paul was working nights at while he going to graduate school on the weekends.

It would have been around this time period
It was... a tough shopping trip. The toughest of tough. I was stumbling around, four weeks out from major abdominal surgery. I think Maggie was probably in her Moby, because she lived in that thing, but I know that I was wearing my c-section girdle and a skirt.

And I know this because apparently I'd lost enough weight that my skirt no longer fit and it fell down, around my ankles, and I did not feel it until I nearly tripped over it, while walking down one of the first aisles of the store.

Thankfully no one was around to see that spectacularly bad moment.


When Paul went back to work that night he was met with plenty of rumors because everyone who had been working KNEW that I was pregnant again.

Because obviously I was pregnant again. They had seen my stomach, poking out from under that freshly born baby.

It looked pregnant.

Now generally I felt pretty... good... when I was wearing my c-section girdle... but this dispelled any illusions I had about not looking... totally pregnant.  Which I mean, is how it actually is, for most women, in real life, after they've had a baby.

Recovery takes time. It should take time. We've just had a baby. Those muscles took nearly ten months to get like that. They don't pop back into place five minutes after the baby's out.


On my end, with time it has slowly (I feel like the word should be written stretched out the way I said it in my head... like "slooooooooooooooooooooooowwwwwwlllllllly....") gotten better.

And by "gotten better" I mean, people usually don't think I'm pregnant now, if  I don't wear things with an empire waist.

But I've gotten plenty of these questions in "normal" shirts and dresses, just to dispel any thoughts that that was the problem.

Time will tell if it improves enough that the questions disappear entirely.

I guess at least I can laugh about it? A lot?

At least outside the moment when it's actually being asked.


Tuesday, May 29, 2018

The Day before the Surgery

So this isn't nearly as bad as the name of the video implies.

I feel like Tony's expression here sums up how I felt about having these tests ordered...
Basically when I was panicked about what this whole process was going to be like I watched several vlogs (while sipping that horrible, horrible drink) and it helped calm me down). And that's why I kept talking to my camera (not graphically) about how I was feeling because I figured that there were only a half dozen vlogs out there talking about this kind of embarrassing process and they were super helpful to me.

And I had vlogged out day already.

So I threw it altogether, from our trip to Walmart to buy prep supplies to mowing the lawn while waiting for six o'clock and the time to drink the solution to arrive.

And then Paul got home and I started drinking and I kept talking (again not graphically) about how I was feeling and what it tasted like (warm, thick, super sweet 7 Up was my take on the mixture).

For anyone who's wondered, what the day before a Colonoscopy and Upper Endoscopy are like, this is the video for you. Because I have never been so thankful for Youtube as I was when it calmed me down watching videos during my prep.

And as everyone says, the prep is completely and totally the worst part.

Monday, May 28, 2018

Backyard Summer Fun and Stories

It has been hot here.

When we lived in California 92 or 94 degrees was a hot day but not that hot.

But when you throw in the humidity that we have here in Michigan those 90+ degree days feel really, really hot.

So hot that none of the kids wanted to be outside until we brought out the pools.

My favorite part of this video, and the reason that it's nearly ten minutes long, is because Sadie started making up stories for the other kids about the game they were all playing together and when I was editing the footage last night so many parts of the story were just too much fun to edit out.

So here, is a "pool party," with lots of story telling by Sadie (and a little by Patch) thrown in:

Sunday, May 27, 2018

Sunday Updates: Week 4

We have had quite the week.

The best part of it was today.  Nani and Bopa arrived in their truck, having driven all the way out from California, with one sweet tempered and one ornery cat along for the ride, and the excitement when we got to see them for a few minutes on their way to their new hope was palpable. 

They are here to stay and we could not be happier.

Because the kids were having a bit of a hard time waiting for their arrival, and because it was 91 degrees in our part of the Midwest this past week, we broke out the baby pools and the kids had fun while the time began to pass much faster than it had when we were indoor waiting (no one really wanted to play outside when it was that hot and humid until the pools arrived from the garage). 

This week we registered James for preschool next year. And the year after we think he'll be in the "Young Fives" kindergarten class, which is hard to imagine. If everything goes as expected he'll then do a second year of kindergarten in one of the big kid kindergarten classes.

After watching every other kid in the house go off to school (since that's what he calls Tessie's therapy too) he is so incredibly ready.

In surgery news, I managed to make it through the pre-op prep for my upper endoscopy and colonoscopy.

And as everyone assured me the prep was, by far, the worst part. All I had to do for the surgery was fall asleep and then wake up, groggily and walk as far as the car so that I could go home and sleep more, while Paul took a day off of work to stay home with the kids.

The doctor sent off some things to be biopsied and tests for bacteria but did not see any damage while he was doing the scope, which was good news.

And I am so glad that THAT is over. If I have to have a repeat in fourteen year it will be too soon.

As Tessie demonstrated in the video I posted earlier today, she can now apparently climb ladders, very quickly.

I didn't know this, however, until I heard giggling in Maggie's room. I went upstairs, to check on Maggie and found that Tessie had joined her in the top bunk of Maggie's bed and that the two girls were giggling hysterically together.

Upon seeing me Tessie decided to climb down, which looked quite a bit like throwing herself from the top (behind first at least) without too much care for where the first ladder rung was, and I ran over and managed to catch her and put her down gently.

But for the rest of the day she kept trying to sneak back upstairs to climb up in the bunk bed and give the ladder another try.

And now, the Nyquil I took for my cough has me just about falling asleep (my eyes keep closing while I'm typing) so I'll leave you with a few of my favorite photos from today's "Pool Party."

Tessie Gives Me a Scare with Her New Climbing Skill

I promise I will have my Sunday post up soon. But I haven't gotten a chance to sit down yet today to write it so it's going up a little bit later.

I do have this 30 second clip of what happened when I heard laughter from Maggie's room and I opened the door to discover that Tessie has learned how to climb a ladder... and can now get into Maggie's bunkbed. And that she has not realized that she needs to be careful climbing back down.

Her climbing reminds me so much of her Maggie at her age.  So much.

Thursday, May 24, 2018

End of the Year Preschool Celebration

Yesterday was Patrick's "Preschool Celebration" (kind of like a concert the night before graduation). And since I have to be fasting for surgery today, we made yesterday a big day to celebrate his last day of school by going out to pizza before his little concert!

Wednesday, May 23, 2018

10 Things About Me

I'd made little about me sections for every other member of the family. So it was finally time to sit down and make one for myself. Which was possibly the most awkward video to make so far. Talking about subjects that interest me? No problem? Talking about myself specifically (not an experience)? Totally awkward.

Tuesday, May 22, 2018

The IEP Meeting

Yesterday was Maggie's IEP and today I'm talking about it on the vlog!

Monday, May 21, 2018

Watching the Royal Wedding

I've been so busy moving all Sadie's belongings up to flights of stairs for the last four days and all of Paul and my belongings down to flights of stairs (in between all the drop offs and picks ups and meetings and appointments that still exist) that at night I haven't been able to keep my eyes open to edit videos for hours or do anything to actually get a vlog out after I get everything else done that needs to be done for the next day.

But last night I managed to piece together a video and this morning I made the thumb nail (while James sat next to be and offered not so constructive criticism about how he thought it should six am...) and so this morning I have a rare early morning video.

We had so much fun watching the Royal Wedding with the kids. Even Tessie had fun wearing a little tiara for a little bit and bouncing around her play pen.

But I think my favorite part is this offers a little glimpse into how busy even the relaxed moments in our house actually look.  And Maggie didn't even choose to join the watch party.

Sunday, May 20, 2018

Sunday Updates: Week 3

I covered some of this in the video last week, but I promised I'd catch you all up on Sundays in print so I'll repeat some of that here:

Tessie's losing her monitor, because she had a good night and only stopped breathing five times when we were at the hospital, but mostly I'm the one who feels like they can't breath.

I think I've felt like I'm having a panic attack five times in my entire life, a crushing feeling like when I had pneumonia and just couldn't get air into my lungs, and three of those times were in the last week.

First, so that this makes sense, I'll admit that I have a general distrust of non-medical monitors.

Before Tessie had her medical monitor we bought one. It was a Cocoon Cam. It had rave reviews on Amazon. They said they were being tested in prestigious NICUs and would be the next big thing. A video camera that picked up babies breathing and sent alarms if it didn't detect movement.

It was a couple hundred dollars that we didn't have. But we got together enough money and ordered it because it felt like a matter of life and death after we'd seen her stop breathing so many times and had those test results from the first sleep study.

And we got it and it said she wasn't breathing many times during the night.

And the second sleep study came. And it said that she had severe central apnea. Again. Like the first one had. And finally everyone believed us and agreed that she really had it now.  And we got the medical monitor.

We set it up but we kept the Cocoon Cam up above her bed. We had been careful to get the correct distance so that it only showed her mattress and nothing else. And I watched them both.

The first night I realized that they never alarmed at the same time. Her monitor would alarm fifteen times. The Cocoon Cam might alarm ten. Not once would they go off at the same time.

See the problem with all the positive reviews was that those babies didn't (probably) have apnea. The monitor offered peace of mind without really having to do its job.

I left a review and the company quickly fired back saying it wasn't meant to be a medical device and that I'd probably set it up wrong anyways, even if I shouldn't be using it with a baby with apnea.

I had not set it up incorrectly in those days when I'd been desperate for it to work for my daughter.

The next time I tried to plug it in, when Tessie was threatened with losing her monitor for the first time, and I was desperate and thinking something was better than nothing, it had been sitting on a shelf for a couple months, it wouldn't even power up.  We got maybe a month of use out of it, before it became a very expensive paperweight.

So I find myself skeptical of every monitor that isn't medical grade.

But I also know that her monitor isn't perfect.

It tells me when she isn't breathing. That alarm goes off and I can run across the room and feel the stillness of her chest.

But it has never recorded an apnea and sent it to her pulmonologist. Ever. Which is one of the reasons that they think she should be fine without it.

Because even when I point out the six bad sleep studies and "do you really think that she was really having no apneas during all that time between the really bad sleep studies when she was at home and on the monitor and only had them on those nights at the hospital?" everyone just sort of shrugs.

Probably because it really doesn't matter if it wasn't recorded by a computer.

I do have a plan.

Tessie at the hospital cafeteria right before her sleep study.
We're going to order a crib, an Owlet Monitor and an Angel Care Baby Movement Monitor as soon as Paul's billing comes through. I'm praying this setup works better than the Cocoon Cam.

At the moment there have been some hiccups with that, so his bill payments are an every other month event (or slightly longer event that also makes me feel like I'm having a panic attack), that is currently a few weeks late.  A number of people have asked about a Go Fund Me and we haven't done that... but so many people have asked that I did make this Tessie Wish List with the items we're planning on using.

In much happier news, Tessie is shocking all of us with her progress in therapy.

She is doing so well.

Her therapist had me come in to talk about her this past week. She wanted to show me the graphs of her progress.  She has gone from 0% in so many areas to 100% (in things like eye contact and pointing). And three times last week she lifted her arms for me to pick her up, which totally made my entire week.

She's also known as something of a stubborn little diva (not my words, but everyone feels they're a pretty accurate description) around the therapy center, who demands to do things her own way and who has a tendency to refuse to cooperate when she's being shown something, only to turn around and demonstrate the skill on her own five minutes later when she's playing.

In perhaps her most shocking moment last week, Tessie walked up to the electronic key code door and punched in the four digit code then hit the top button so the light turned blue and the door knob turned.

She reminds everyone a lot of Maggie.


In non- Tessie related news I have my upper and lower endoscopy this week (boo) and hopefully that will be as uneventful as the other biopsy which found everything was normal according to the emailed results I got a few days ago. 

Sadie and Patch's dance performance is coming up in a few weeks. 

Patch only has four days of preschool left.

And I register James for preschool in a few days. 

It's that busy time of year and every week feels like it's going by faster than the one before it.

Now to run and get everyone ready for Mass.

Because for once no one has pink eye or strep (finally) and so we all get to go together at the same time.

And that totally makes my day.

Friday, May 18, 2018

Huge Tessie Milestone that was the Best Mother's Day Gift Ever

She makes me so happy you guys.

Not once but twice on this day when I walked into the room she lifted up her arms for me to pick her up.

It had never happened before and it was amazing.

Thursday, May 17, 2018

Well That Went Badly...

This video is 1:20 seconds long.

I sigh each time I watch it. Sometimes I laugh too.

Patch watched it and said "MOMMY?  WHY ARE YOU SO SLOW?!?!?"

James said "That happened."

Yes thank you James.

Basically I was moving a bookshelf, because we are switching the master bedroom with Sadie's bedroom (which is truly the master in this house) and I didn't realize that the big bookshelf had begun to lean on it... despite all the braces I'd put on it...

A while back I'd asked Paul to take it onto the wall... but it never happened and it was braced by the bed and other bookshelf... until that bookshelf moved.

And. Well. I had been filming because I was going to do one of those sped up cleaning sequences and I'm thankful that I was. Because that's the only reason I laughed after it happened.  I was already picturing it in slow motion.

Wednesday, May 16, 2018

Why I'm Late... Intentionally.

Punctuality has become less important than being exactly 6-10 minutes late every single day.

But we have a pretty good reason.

Tuesday, May 15, 2018

We're going to lose her monitor

I was hoping that her doctor would reassure me and tell me that we weren't going to lose her monitor and that maybe there was something that I hadn't thought of.

That didn't happen.

Sunday, May 13, 2018

Sunday Updates: Week 2

So a few nights ago I was laying on the top bunk with Maggie, part of our nightly bed time ritual, when I saw her flip onto a screen on her iPad that I hadn't seen her use before.

Now usually during Mommy and Maggie time iPads are not allowed. But once in a while I bring a book to read and I let her have her iPad and we have quiet time together. Except quiet time only lasts for thirty seconds or so, because she decides that she would rather have my attention than play on her iPad and so she quickly begins to have me tell her a story that almost always goes something like this:

Maggie: "Molly. Freckle. Toe."
Me: "Molly is a mermaid with a freckle on her toe."
Maggie: "Flip, flip, flip."
Me: "And she goes flip, flip, flip."
Maggie: "under the sea."
Me: "Under the Sea."

Molly always has a freckle on her toe because Maggie has a freckle on her toe. Sometimes she also has legs. But she's always still a mermaid.

But on this particular night the iPad held her attention for a few seconds longer as she brought up the messenger screen and for a moment I saw a long string of a conversation filled with gifs.

I quickly grabbed the iPad. She grabbed it back and flipped to another screen. I grabbed it again. She grabbed it back a second time.

"Who are you talking to?

"No thank you please. NO! THANK! YOU! PLEAE!" Came the response, standard whenever she doesn't want to talk about something or is embarrassed.

I was surprised. I have extreme parental controls on both the girls iPads. Maggie has hers for short amounts of time, and not every day. She has apps that I've selected for her, but can't go on safari. And I hadn't taken the Messaging app off because I didn't think she had access to any phone numbers. I had looked at the app and it was entirely blank. In fact after I found the messages I tried typing in letters and I couldn't make a single name come up.

I still have no idea how she did what she did.

Somehow she used the Apple Messaging to access my phone book.

Because she's apparently a genius in breaking open more than just physical locks.

Now remember this is a child who, according to what we "know" doesn't demonstrate any significant ability to read beyond simple basic words.

I've had my suspicions, here and there, when we're walking along and she'll see the word mermaid, no picture, and her head whips around so fast and she runs over to get a closer look (even if it's in fancy hand lettered cursive) but even then I wasn't sure she hadn't memorized that single word.


I opened the app and found that she had been messaging a therapist that she hadn't seen in almost a year, sending gifs and what I first thought was random letters, since December.

And I laughed and laughed and wondered if the therapist thought that they'd been coming from me and that I'd lost my mind.

There were angry Donald Ducks and other random gifs that had caught Maggie's eye.

I texted back quickly, that apparently Maggie had figured out how to text from her iPad and she texted that she thought that was what had happened.

The funniest part though is that she is one of Tessie's new therapists.

And she had therapy with Tessie on Thursday.

And we were able to laugh together. And she gave me more information.

"Were you able to read the messages?" She asked.

"I saw the gifs." I said. But honestly I'd been so embarrassed, thinking that it looked like they came from my account, that my first instinct had been to quickly delete it (something I regret hugely now).

"No, but did you read them? She was sending me sentences!"

And that's when I found out that Maggie had been texting entire sentences about her day to her old therapist.

And I nearly fell over.  And we laughed more about the amazingness of this kid and all that's going on in her head.

Yesterday her teacher called, to tell me the Special Olympics was canceled for the day, probably because of the non-stop rain, and I passed on the information to her and she said that they would definitely start her on a typing program on the iPads at school and see how it worked out.

And I think I'll sending Maggie texts from my phone and see what we can come up with.

This kid.  She is constantly amazing me.


In surgery news: I had my surgery yesterday. I don't really know anything beyond that it happened because Paul was with the kids and picked me up outside the door, so he wasn't there to talk to my doctor afterwards and when I was awake enough to ask if my doctor was around to let me know how it had gone he was already in his next surgery.  

I'm still feeling pretty beat up this morning with my Motrin, but that's to be expected, and I'm sure I'll be feeling better everyday.

I'm having a hard time slowing down and not being up getting stuff done though.


We let Tessie stay up late on Sunday night watching Goldie and Bear and woke her up early Monday morning.

We needed her to be exhausted by the time she got to her EEG Monday afternoon. And she was. 

She was also furious. The moment she realized she was being hooked up she was outraged. For a solid two minutes. 

The techs were ready to give up after one minute, and said not to worry. We could come back and sedate her.  

I explained that she because of the central apnea they would have to intubate her. So they rallied and tried one more time.

And after two minutes she was sitting back in my lap watching cartoons. By the time they finished she was almost asleep in my lap. 

And five minutes after it was over she was soundly asleep and she slept for just past the time that they needed her too and we had a little trouble getting our very determined sleepy baby to wake up because she wanted a three hour nap. 

But wake she finally did.

Two days later he neurologist called to check in and when he called and heard she'd had the EEG he checked and called back and let us know that it was perfect. 

So that is one thing checked off the list and now we just have to get through the MRI.

The MRI is where all my worries lie. The last one had the little brain bleed and was inconclusive. So it would be great if this one was not inconclusive and was actually... good.  Or better yet. Entirely normal.


May has been the most hectic of months. 

I'm ready for it to be over.  I'm ready for school to be out and for summer to be here.  I'm ready for days playing in the back yard and going to parks and for long walks in the evenings.

I cannot wait.

We just have to get through my two scopes and Tessie's MRI and we're in the clear.

I have never been so ready for summer.

Sadie dancing around outside the night before her birthday.
Two summers ago.

Saturday, May 12, 2018

Surgery Day and a HUGE Maggie Story

So the very best part of this is the end, where I get to tell you the second half of the story of Maggie texting, where she completely and totally surprised all of us with a brand new skill.

Friday, May 11, 2018

A Macaroni and Cheese and Potato Pizza for Maggie

This post takes you along through our day, from getting labs drawn for today's surgery, to going to the library, to the kids playing in the front yard while I cleaned out the car. And of course it includes our culinary experiment when Maggie begged me to make "Macaroni and Potato Pie" again (which she would like me to make every single night) and I decided to put a fresh take on it by making Macaroni and Potato Pizza.

It was a change, which is always a risk... and I wasn't quite sure how she would take it...

Thursday, May 10, 2018

The EEG Results, the Pre-Op Appointment, and a Missing Tooth

We got not one but two calls from Tessie's neurologist yesterday. The first on was checking in. But when he heard that her EEG had been done he tracked down the results and called us back to give us the news!

And Maggie lost a front tooth. I think it was loose for all of a day but she's not one to let something that can wiggle hang around for long.

Wednesday, May 9, 2018

From Winter to Summer...

When it was 60 degrees when we dropped Tessie off at therapy yesterday I knew that we needed to get out and do something fun.

I hadn't planned ahead and so we stopped at Once Upon a Child, picked up swim shorts that cost $3.50, and headed to the lake for playing on Big Wheel trikes and fun in the sand.

It isn't quite swimming weather, but it was still a lot of fun!

And it really feels like we went from winter to summer this year in Michigan!

Tuesday, May 8, 2018

Tessie's EEG

I'm just over here hoping that I never ever have to write that I'm taking a kid to get another EEG ever again.

That's pretty much my goal for the rest of my life. Sound good?

I think it does.

Monday, May 7, 2018

What's in My Bag?

We are home having survived the EEG (and after a suggestion of giving up we powered through and got it done), but last nights video was made when I was definitely stressing about today and going for a little more light hearted theme in the midst of a not so light hearted week:

Sunday Updates: Week 1

After a few fairly relaxing months, where life sort of went along according to the same daily schedule, the last week has been a whirlwind of appointments and it seems that all of May is promising to be more of the same.

Tessie outdid herself by having a second scary night last week, although it didn't last quite as long as the first set of apneas. 

Basically both times she stopped breathing repeatedly over the course of an hour, with her little monitor beeping almost every minute, and instead of beginning to breath on her own like she usually does she just... didn't... until Paul or I got to her and rubbed her back or chest or moved her around and got her to wake enough to start breathing again.

The timing wasn't bad though, because she was due for her semi-annual sleep study yesterday anyways. I had pushed it off as far as I possibly could (because every time she has one we're in danger of losing her monitor) but it was time and it did work out well.

We have noticed that these "attacks" for lack of a better way of referring to them, tend to happen on the days when she is extremely tired. They happen when she refuses to go to bed for three hours (which is rare) or when she refuses to take her afternoon nap (also rare). 

So on Friday the goal for the day was to keep her awake. The added challenge of keeping her awake was that we had to drive to the Children's Hospital and an hour and a half in the car nearly always puts her to sleep. 

I came up with a plan. Paul took the day away from his office. The kids left school early. And we all went to Grand Rapids together, with Sadie and Tessie riding in Paul's car, and Sadie entertaining Tessie so that she wouldn't fall asleep. 

First though I had to get through my abdominal CT, which was worse than I expected, because the three bottles of barium solution made me feel really horribly sick.  I won't go into details but it was... unpleasant. But probably is maybe still more pleasant than the upper and lower endoscopies I have later this month (at least I'll be asleep?). 

But after that was through we picked Tessie up from therapy, picked Maggie up from school, and headed north.

When we arrived in town we took the kids to a park to play and out to ice cream, before it was time for everyone except me and Tessie to head back home.  

Tessie and I wandered around a few stores for a bit longer and had dinner at the hospital and then it was finally time for her sleep study.

And it went better than I could have hoped.  She did have a hard time with the nasal cannula, which we expected. The one they use for the sleep studies has a part that hangs down in front of her mouth and it gets in the way of her thumbs sucking... which is about the worst thing Tessie can imagine.  But she was so exhausted that she fell deeply asleep, we got the cannula back in after she'd removed it, and she only fussed when it had to be adjusted a half dozen times during the night. 

And we were up at 5 and on the road by 5:30 and home before the other kids were even out of bed. 

And now I can hardly keep my eyes open because sharing a hospital bed with Tessie is not particularly restful, but hopefully I don't have to do it again for six more months.

I have no idea how it actually went. I've never seen her stop breathing during her previous five sleep studies, but she always has, so the fact that last night seemed totally normal doesn't really mean anything.

The dreaded nasal cannula
Tessie does have an EEG on Monday, which is the next big thing on the schedule.  It will be the first non-sedated EEG (that isn't a 24 hour EEG) one of our kids has had (Maggie's short EEGs have all had to be sedated). 

I also found out via a conversation with a neurologist who isn't Tessie's that apparently one of the main reasons for the MRI on the 1st of next month is because the MRI last year was "inconclusive." No one had ever mentioned that to me before. So. There's that too. I asked questions and still have no idea what that means. I guess it doesn't mean anything.

Saturday, May 5, 2018

Autism Tests, CT Scans, Sleep Studies and More!

First thing first. Tomorrow there will be a real, actual blog post. With lots and lots of words. And pictures.

It's already written and ready to go, so I can't even get too tired to post.

My plan is to do, a minimum once weekly entirely written blog post that will go up on Sundays.

Next up, in the hectic rush of the last few days I haven't posted any of my latest videos here.  We've had a busy week, with a much busier month coming up (which I'll talk about a bit more tomorrow).

In this first video I let James pick out his own library book and the only book that appeals to him is one about vegetables wearing underwear and singing about wedgies. Because of course that book actually exists.

He also helped me make sacrifice beads for Patch though, so maybe that kind of balances it out?

See that device on the top right hand corner? It was $12 and is seriously the most useful thing if you take videos frequently with your phone). It makes the footage so much steadier.  Even if I had no interest in making vlogs I would still frequently use it to take steadier videos of the kids.

On Thursday we went to Maggie's, I don't know, millionth ADOS (slight exaggeration) and Tessie decided that playing in the mud was the best thing that had ever happened to her. And Sadie and I watched Dr. Quinn on Amazon Prime and tried out two printed face masks.

Friday was a day to be survived.

Okay, that's a slight exaggeration, but the three bottles of barium were more unpleasant than the gestational diabetes drink of pregnancies past, if memory serves (and I'm certain it does), and sleeping in a hospital bed with Tessie is very near the bottom of my favorite things.

But because of those not so fun things we threw in a bunch of fun stuff in between to make the day a little bit better for everyone. So there was also ice cream and parks and Tessie was pretty cute even if she was getting hooked up to all those wires.

And that is the latest on the vlog!

I hope you all are having a great weekend.