Friday, May 25, 2018

Sadie talks about being a Pioneer

She was so excited to tell us what she'd learned!

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

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 look...at 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.

So.

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.

Sunday, April 29, 2018

A New Name, Updates, and a DITL

First off, with Tessie going to therapy, and things sort of settling into a normal schedule again, I am hoping to start writing out one long (not super long but like, normal long, as in not super short) written blog post a week again. I'm planning on picking a day of the week and making it a regular post at a regular time that I can do the night before and schedule.

I want to start this week, and it will be filled with much of what's in the vlogs, for people who like the written format better, but I'm not sure if it will be completely regularly weekly until the end of May, because of what I'm talking about in the first video down below (the one with the red background).

The reason is that between the two of us, Tessie and I, are heading to the hospital six times in May. I'm going under general anesthesia twice, and she's going under at least once.  And she's making at least two big trips to the children's hospital this month.

I will put those updates in my end of the week reports (for those who want to know sooner, they'll be in the vlogs first).

And that's the latest!

Oh and it finally appears to be spring here in Michigan!

I hope!




Friday, April 27, 2018

Tessie's Scariest Night

When I made this I had convinced myself that it had been four months since Tessie had had a bad night (for some reason I kept thinking it had been in January) but after I finished this I went back and checked, an upside of blogging and vlogging I guess, and saw that it was almost two months to the days since her last scary episode, which makes these almost like clockwork.

Our little Tess is totally and completely fine now, and had a great day at therapy yesterday and today. She's napping at my feet as I type this.

I just wish that we could get this figured out.  Okay, I really wish that everyone who said she would outgrow it was actually right... because that would have been awesome.

Here's the latest:

Thursday, April 26, 2018

Does My Child Have Autism? Do They Have a Delay? And What Should I Do Now?

As April comes to an end (one post after this) I wanted to put together a post with links to sites that can help parents who have questions like "is this normal?" along with answers to questions like "what do I do now?" if something isn't "normal."  This post aims at answering those questions, in one place.

Wednesday, April 25, 2018

She Did Say "Hi!"

Tessie may steal the show by first saying "yeah" and then saying "hi" in this one, but I also take you guys to Paul's office (which I'd only seen once before today) on our way to a doctor's appointment, on a shopping trip, to a going out of business sale at a dance wear store, and everywhere else our day took us!

Monday, April 23, 2018

Meet Maggie!

I'd made one of  these for the other four kids but making Maggie's took a little bit longer.

I had this picture in my head of what I wanted her post to look like and it didn't come together until this week, when it did.

Sunday, April 22, 2018

Gymnastics and Horses

This Saturday is our last Saturday with regularly scheduled gymnastics (although we have so many absences built up over the last year with all the illnesses that I think we have nearly an entire term of makeups, so this probably won't be our last Saturday class, just yet!) so I had to make a video about it.  But the best part was that it was finally dry and warm enough for the girls to be outside on the horses!

Saturday, April 21, 2018

Spring Cleaning (Starts)

We've now had three scattered days that sort of felt like spring and I'm getting into the season by doing some major spring cleaning.  I'm not nearly done, but this is the start!

Thursday, April 19, 2018

The Invisible Years.

It's Thursday and I didn't get around to posting yesterday so I have two posts today!

The second one is really just silliness with the kids.

The first is... a little more vulnerable.

But I have to say that I did have fun editing the photo.

Edited to add:   I realized after making this that I did probably speak to generally and that obviously this won't apply to everyone with a disability and their experience.  I do think it's a widespread problem though and that's what I was trying to express here, however imperfectly.




Monday, April 16, 2018

Autism and Being a Different Sort of Mom

It's Monday and it's still April (we've reached the halfway point) and that means I'm still talking about autism today.  In this video I talk about the mom that I imagined I would be and how that she doesn't have a lot in common with the mom I actually am.

Although I think this one isn't limited to moms with kids on the spectrum, although my own experience is definitely different from the norm as a result of my kids with different needs.



And I finished this late last night so I didn't get a chance to post it, but for anyone interested in the technical side of making videos I made this little video, and had lots of fun doing it!