A Birthday, A Collapsed Lung, and A Genetics Appointment

The last week of March was hectic.

But before I get into the part where things got really scary and Sadie was hospitalized because of her asthma, I'm going to share a little story from this morning.

After a week of having her asthma controlled using her steroid inhaler twice a day, and her rescue inhaler every four hours, she came home from school and I learned that she had her first "attack" since getting out of the hospital.

It was at recess, she explained, but was vague about the details no matter how much we asked. But this time her inhaler had worked and she'd been fine.

At home, over spring break, after getting out of the hospital, she'd been running around quite a bit once things were under control, so I was a little surprised that recess had caused it.

That is until this morning when she said, ever so casually, "Hey Mom, guess what? I ran two and a half miles in mileage club yesterday! And guess what else? I'm faster than everyone else now!"

"Now... that you have your inhaler?" Because you see before, she was one of the slowest kids out there. Everything began to click into place. "So. Um. Were these two miles, before of after that asthma attack?"

"Oh after, after...." she trailed off. "Oh. Before. Yeah. Right before. But I'm faster now mom! Than everyone else!"

I couldn't help but laugh at her enthusiasm.  The asthma attack was explained.

I think she pushed herself just a little bit too hard too soon.

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Especially considering the fact that her doctor thinks it's likely that she had a partially collapsed lung less than two weeks ago. 

The day got off to a rough start. Tessie had a genetics appointment for a second opinion at the other children's hospital that's near us. 

After the first office never brought us in for a follow up appointment to explain what the results actually meant, beyond a hurried phone call promising an appointment (despite asking for one), I asked our doctor if a second opinion would be possible. He said it would and a few weeks later I got a call asking if we were getting a second opinion or transferring care.

I said that I wasn't certain, that I was leaning towards transferring care, and they told me that they would triage her records from her whole exome sequencing and call me back. If it was not serious the wait would be six months. If it was more serious it would four. 

I've gotten used to waiting for specialists though and six months really isn't all that bad.

A week later they called again.

Would I be willing to transfer care? 

I guess. Sure. Yes. I wasn't happy where we were. What did we have to lose?

They wanted to see Tessie in two months. 

I hung up the phone. What exactly did that mean? If not serious was six months, and more serious was four, what was two?

Her doctor explained that it probably meant that she was interesting and not to worry, but it was hard not to.

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I worried even more when we woke up on the morning of that appointment and Sadie could hardly breath.

We did a breathing treatment and she sounded a little better, but there was no way I was sending her to school like that. And suddenly the best place for her seemed to be one of the best children's hospitals in the country. 

So I loaded her in the car, along with Tessie, and we headed south and then east. 

An hour later her breathing finally sounded good and she finally felt better. 

We went to Tessie's appointment and they explained a lot about the rare gene that Tessie inherited from both Paul and I. They said that they'd like her to come back in a few years, because they're hoping that by then, they know more.

However they were really interested in the other gene that she and I both have. The EXT2 mutation that we have is supposedly pathogenic. It should cause bone tumors (osteochondromas), they explained, in 96% of the people who have the gene. 

But (and this was a big, hopeful, but) they were hopeful that this gene isn't really pathogenic. Because there are four people who are known to have this variation, other than Tess and I, and none of them have osteochondromas, which usually show up by the time a person is Sadie's age (and because this gene is dominant each of our kids has a 50% chance of having inherited it from me). 

And I don't appear to have them, which kind of makes five. 

So they wanted to do a full body x-ray of Tessie, because if she's going to have osteochondromas they should have already begun to show up by this age. 

The x-ray process was not fun. But knowing with a high degree of certainty whether or not she was going to have this problem was going to be a big relief. And since it's been a week with no news, I am taking that as a very good sign.

Meanwhile, Sadie was feeling great.

So we drove back home.

She felt so good that she was even able to go to her parent-teacher conference that night, which is student led, to show me her power point presentation.

We went on a little walk together, and her breathing sounded great. And we even went to the store before heading home.

As she was eating dinner, it started. She started to shake. She was freezing, she said. Could she turn on the heater?

I asked her to look at the thermostat. It was 75 in the house. No, she couldn't but if she was really that cold she could get a blanket.

Her breathing still sounded fine. Until it didn't. As dinner ended her chest felt tight. She started to have trouble breathing. I grabbed her inhaler. It didn't help much.

We waited twenty minutes, and I helped her down to my room and set up the nebulizer. She was still on three time a day treatments and it was time for one anyways. I started the machine and sat next to her.

And that was when I really realized that something was wrong. She'd say something now and then, and she just wasn't making sense. She said her chest felt tight and the right side hurt a lot. But I was especially concerned because when she spoke she just wasn't herself.

I grabbed my phone and called her doctor while she was still hooked up to the breathing treatment.

The answering service took the message and her doctor called within thirty seconds.  I'm pretty sure she gasped three times while I described what was going on and then told me to take her to the ER now.

Paul had been with the other kids, and thought it was just as asthma attack (and as a person who's had asthma attacks all his life I think he thought mom was overreacting a bit). But he helped me get ready and Nani met me on the road on the way to the highway and jumped in our car.

The triage nurse said her lungs sounded okay and I thought that maybe the albuterol had finally kicked in. She had a fever of over 100, which was why she couldn't stop shaking.

The PA said she sounded bad. The same respiratory therapist from Monday came in and gave her a breathing treatment.  And then the attending doctor came in with a group of people and blood was drawn, an IV was put in and another chest x-ray was ordered.

And that was when we were told that she had pneumonia, a white blood count that was through the roof, and that she was being admitted.

She was on two different antibiotics, and was curled up in bed, when I left that night, with Nani sleeping on the fold out bed.

In the morning I got Patrick, the only kid that had school, off to school with Paul, and then raced back to the hospital.  Nani came home to watch the other three with Bopa. A doctor came in and repeated that it was pneumonia and ordered a new antibiotic.



In the afternoon a group of doctor's came in for rounds. They asked a lot of questions about her history and then announced that this wasn't bacterial and that she was being pulled off all the antibiotics and had a new emergency action plan.

She was doing much better, bopping around the room, cracking jokes, and she could go home.

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But I was confused, I told her doctor at the follow up two days later.

Was it viral pneumonia? Why did she improve so fast on the antibiotics?

Her doctor looked through the chart and said that sometimes, with asthma, a collapsed lung looks like pneumonia on an x-ray, and sounds like pneumonia, because you can't hear air moving through the lung, and that that's what they thought had happened.

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I have never been so thankful that we went to the ER that night.

I did make this video of that first day, when we went to urgent care, but more importantly, this video is mostly about the huge week long field trip that Sadie's class got to go on the week before all this started.

In fact, I'm pretty sure that when she had her first attack she played down how bad it was because she didn't want to miss the last day of the field trip.

I got to go to one and a half of the days, and Paul even swung by one day after getting out of court, and it really was that amazing:



In totally unrelated news, I have been working hard with Little Miss Runner on coming up with running solutions. One of those solutions is to go on one or two runs a day.

So far it isn't decreasing her eloping. But she is super happy. And that isn't a small thing at all.

We run connected by two leads and a harness. I'm enjoying it almost as much as she is!



In other news, I am "almost fifty" according to Sadie (also known as 37), because it's all the same when you're ten. I had one of the best birthday's ever, because it was absolutely uneventful in terms of any sort of disasters, everyone was healthy and we spent time together and had fun.


And Maggie spontaneously told me "Happy Birthday."

Here's Maggie, face covered in paint after really enjoying some art time!

And that is exactly what makes a good day around here.



That is the latest around here! I had no idea I had so much to say! Hope you are having a lovely start to spring.

Oh and I almost forgot! Chapter 11 is up! And for about three days last week I was ranked #3 in action, which was pretty exciting!

 

Birthdays, Snow, Scripts, and Name Changes

Patrick's birthday came and went and was a success!

He had school, because it wasn't on a weekend, so he got to see his friends.

When asked what cupcakes he wanted to bring he said PJ Masks, of course but then asked that there be Princess Cupcakes for the girls. The store didn't have princess cupcakes so he took a dozen pink Poppy Troll cupcakes with him instead, and they were a big hit.

And then he had a PJ Masks birthday party with our family at Chuck E Cheese after playing at the local science museum waiting for Mae to get done with therapy, that afternoon.

Both were lots of fun.

A certain someone did briefly try to make a break from the birthday party after the cake, I think because she was a little overwhelmed, and I was surprised that she was tiny enough to fit between the bottom of the booth divider and the floor (when she went down there I thought, "at least there's no where she can go"), which meant she nearly made it to the door, which was right on the other side of the wall of booths, and would have if I hadn't managed to catch hold of her boot. 

Oh well, it just added a little bit of extra excitement after the cake, and she went on to have a lot of fun playing games with the other kids after her attempted elopement.  Moving on...

Winter has arrived in Michigan and bundling up five kids to go out and play in the snow gives me a renewed admiration for any of the kids teachers. Especially the little kids teachers. I have no idea how going out to recess must work in a kindergarten or preschool classroom, where all that snow gear must take an hour to get on, based on how much help the 3-6 crowd around here usually needs with this sort of thing.

Even Patrick, who is getting pretty good at handling some of his snow gear, still needs helps with the trickier parts that he can't quite get on his own.

So it takes us about thirty minutes of prep time to get everyone ready to go outside.

And I don't open up the door to release the first kids into the cold, until everyone is ready, so that the first kids aren't complaining that they're cold and ready to come back in, just as the last ones are ready to go out and ready to play.

I've learned my lesson from years past.

However, this lesson doesn't make getting ready particularly fun, since the four year old was the first one dressed and must have asked "when are we finally going to go out" at least seventy five times, before I'd gotten Patch, and then Maggie, and then Tessie, completely bundled, from head to toe.

Thankfully Sadie can get ready entirely on her own.

I'd forgotten that one of Maggie's scripts, which I hadn't heard in an entire year, was "swim in the snow." She hadn't though.

Within ten minutes of coming outside, after reminding me that it had been too long since she'd had a shake at McDonald's and after we'd gone through that script enough times to convince her that I'd understood sufficiently, she announced that she was ready to swim in the snow and then went through her script about the Bubble Guppies swimming in the snow.

It was pretty great.

I love her memory and how she can call up a script that she hasn't used in a year in an instant, in the correct situation.

And I love that I got that script on camera. I've watched it back so many times. It's one of my favorites.



And lastly here is the video with the update on the sleep study and the surgery.

It basically tells the entire story of the sleep study and the ENT appointment and everything that led up to them, which was more or less in that last blog post, with less dramatic pictures because Youtube thumbnails kind of need that:



And I know I said that was the last thing but there's one very, very last thing.

A bit of blog house keeping if you will.

For the past several months I've been thinking really very hard about changing the name of my blog so that all my pages have to same name, so that I'm not operating under a bunch of different names, which can be kind of confusing.

I've always struggled with naming, well really anything that isn't a child.

Naming kids has always been easy for me.

Naming blogs and other blog like ventures? Not so much.

The last time I changed my blog name lots of people let me know they hated it.

And some people let me know they liked it.

Which was okay. You've got have a thick skin in blogging or vlogging or doing anything online and blogging has definitely been slowly helping me work on that for the last decade.

The thing was, I really wanted to like my blog name. And I liked the newer name more than the older one.

But when I finally came up with my vlog name I actually and really loved it.

It just clicked and felt right as a description for the last decade of my life since becoming a parent.

So I am going to be changing the blog name on Facebook to a name that matches the vlog (at least in part... it won't have "vlog" in it). And maybe I'll eventually add it to the banner here, since my blog here has been living without any sort of a name posted anywhere for quite a while.

And that's what I'm up to at the moment.

James' 4th Birthday: A Festival, A Train Ride, and a PJ Masks Party

I went a little overboard, documenting James' birthday.

But it was so much fun and he was so excited about every moment of it.

And everyone else was having so much fun too. 

That's why this is my favorite time of year. It isn't yet so incredibly cold that we're all cooped up inside most of the time, and it isn't so hot and humid that it's miserable to be out for too long, and I love autumn so much that I'm trying to squeeze every last moment out of October that I can, even as each day gets a little colder than the one before it. 

There were so many choices for activities for his birthday that picking what we were going to do was the hardest part.

We finally settled on the Tecumseh Appleumpkin Festival.

The main reason that we decided on this particular festival for James' big day was because they have a train and we could rent the caboose on this particular train.

We weren't quite sure how the girls, especially how a particular eight year old, was going to do stuck in a crowded train car for an hour. It might go splendidly.

But what if it didn't?

So the caboose was the perfect solution.

We needn't have worried.

She adored every, single, moment of the ride.

As did the littlest member of our family, especially once the train got rolling:

Once the train ride was over we went back to the festival, went on the fair rides (discovered the Maggie loves the Scrambler), and then headed home, where there were presents and cake.

And where one very happy four year old ended a very exciting, exhausting day.



A day that I split into not one but three videos, because it really was that big.

I'm so glad to have these already.

Grumpy Baby Turns Four

Yesterday James turned four.

He woke up and asked if it was really and truly actually his birthday and if he was really actually four years old and I told him that he was. 

We had a big day planned and the least exciting part of that big day was probably the cake, because the day started with driving out to a festival, and riding on a train in his own caboose, and then going on rides at a fair (and there will be more on that later in another post). 

And then, when everyone was tired out from all the fun, we came home and threw the decoration into place, and had cake. And after the cake there was pizza. Which was the perfect order for a fourth birthday party.

And because I'm sentimental I just had to look back over the years at how our big boy has gotten so big.

Because it doesn't seem like that long ago I was cracking jokes about our "Grumpy Baby."

For anyone who hasn't been around all that long, our smiley three turned four year old boy, was an easy going baby with a quick frown.

Who turned into an easy going toddler, with an even quicker scowl. 

He's the first one to ham it up for the camera these days (although in the picture below he and his brother were watching a particularly frightening episode of... Shimmer and Shine) but it wasn't always that way. 

Helpful readers used to suggest that it was because I was using a flash and the flash bothered him.

But I never used a flash. He would just quietly seemed to regard the world around him with a certain level of quiet suspicion when he was a tiny floppy baby (he had low tone and hyperflexibility and the one thing he probably did hold against me was the hours and hours of tummy time and PT practice it took for him to finally sit up at close to a year old).

I did put some of my favorite Grumpy Pics down below. Because they're still some of my favorites.

And he loves to come up with stories about why he was so grumpy in them.

He'll tell me that he didn't like the shirt I had put him in, or the jacket. 

In one particular photo at a farm he told me he was certain I was going to abandon him there (What?!?!?! At that point the child had never even left my side!)! 

So these days he has quite a few theories about his frowns, and loves looking at them (I'm frowning there because it's too yellow, he'll say).



I guess no one can really blame him for this particular expression of disgust:

And so Grumpy Baby is now four and not nearly so grumpy.

He's still pretty cuddly and cute.

And bossy with his littlest sister.

He loves saying "No Tess no!' 

Because of course he does.

And she's become pretty gleeful about finding ways to annoy him, particularly when she's sitting in her car seat and tries to put her foot on top of his leg.

Because she's his little sister.

Happy Birthday James! We're so lucky you're our Grumpy/Smiley Boy! 

And because I've been busy these past few days and haven't share the pre-birthday fun:

And one video about how we're attempting to see if decorations and Maggie are a possibility: