Wednesday, March 27, 2019

Two Overwhelming Weeks

Nani and Bopa went out of town on the 8th and arrived home this morning long before the sun came up, after their flight landed just after midnight in Detroit.

As you may have already imagined, I've been counting the days until they return. I expected their not-quite-three-weeks away to be a bit harder than usual. Juggling all the pickups and drop offs on my own is always a challenge. But I didn't expect it to be the marathon of ER visits and sick kids that suddenly appeared within days of their departure.

During their trip there were the regular things on the schedule, like a week long field trip for Sadie's class (she was home at night), and two parent-teacher conferences, but then there were some not on the schedule things that popped up... like the ER visit for Tessie when she was so dehydrated from whatever was going on with her tummy, the doctor's appointments first with primary care and then gastroenterology following that, and then blood tests and other even less pleasant tests I'd rather forget (and we got all those results today and all but the weird one that is consistently abnormal for both Maggie and Tess, were normal).

And then Maggie eloped, not just once, but twice. The second time was after I thought she was safely on the school bus and headed off, but she took a split second opportunity before the door was closed and before the bus driver got her into her harness to dash down the steps and head off down the street.

Thankfully I was only halfway down the path back into our house when she took off:

There were, of course, some really, really fun times.

There was a mother-son Super Hero Dance and I got to take both boys and we had a blast.

And of course I did some more abstract thinking in the wee morning hours about some of the challenges we've faced over the last few years:

But nothing prepared me for Friday morning when Sadie woke up and said that she had had a hard time breathing when she'd woken up to get ready for school.

Sadie likes to wake up long before the rest of the house and take her time getting ready. I asked her how long it had lasted and she said, "about an hour." So we talked about how that is emergency, and how that's something you tell mom and dad about right away, because with certain kids around here, if "an emergency" hasn't been defined they don't always quite realize the seriousness of the situation.

I will admit though, that she seemed fine when she came downstairs, and because she hadn't come down to us during the attack I wasn't too worried. I called her doctor's office and since they didn't have any appointments available for that day anyways, I made an appointment for Monday.

The next morning, she came downstairs and had a full blown asthma attack. As she struggled to speak I yelled to Paul to get his inhaler and within moments of breathing in the Ventolin she was breathing better.

Still I took her to urgent care where they weren't certain she didn't have pneumonia, because her lungs sounded awful and her oxygen level wasn't great. A chest x-ray and nebulizer treatment later, they were fairly certain she didn't have pneumonia, and we headed home with a new inhaler, and a prescription for five days of an oral steroid.

Sunday was uneventful with only one early morning attack, which the emergency inhaler quickly resolved.  And Maggie's doctor called Sunday night (and explained that she wasn't worried about Maggie's abnormal blood test) and when I mentioned she'd be seeing Sadie the next day we quickly chatted about what was going on with her too.

Monday finally arrived. We went to the doctor and Sadie's lungs still sounded pretty terrible. When the doctor asked her to breath deeply it sent her into an attack, which was resolved when she used her inhaler. She asked Sadie if she thought she needed a treatment and Sadie said she thought she was okay with just the rescue inhaler.

After listening to her breathing again it was significantly improved, so she sent us home with a prescription for a twice daily preventative inhaler, thinking that along with the steroid, and the rescue inhaler, we should be on our way to getting her breathing under control.

She also mentioned that the x-ray had shown "peribronchial cuffing," which she said was basically thickening from inflammation in her lungs. And finally she confirmed what we've suspected since Sadie was a little tiny baby, which is that she believes that Sadie has asthma.

I thought that would be the end of the day and that we'd go home and Sadie would rest while I gathered the courage to send her back to school with her inhaler.

Instead, while we waited to pick up her prescription, she had another attack. And her inhaler wasn't quite as effective this time. Five minutes later the third one hit. I stood next to her as she used her inhaler again, sitting in her seat in the car, and then I jumped into the driver's seat and headed straight to the ER.

At the ER she was whisked back past the first and then second triage, and a doctor immediately came into the room to listen to her breathing.

It was rattly and squeaky and wheezy and her right lung was significantly worse than her left.

They ordered three back to back nebulizer treatments and told us that they might have to admit her depending on what happened after the nebulizer treatments.

Four hours later, after many people had listened to her lungs, we were finally sent home with a nebulizer and a ridiculous amount of albuterol and a new asthma plan.

On Tuesday she had one attack, while we waited to pick Tessie up from school. Her inhaler worked.  But it was disturbing to see that my usually bouncy girl can't laugh or run a few steps, without immediately being unable to breath.

It's such a sudden, drastic change, and no one can pinpoint the cause.

Then Wednesday arrived and we went back to her doctor for the post hospital follow up. I was hoping, after the final day of steroids, and the daily preventative treatments that she'd sound better.

I could tell though after she walked down the hall though that she was breathing fast, even after ten minutes of sitting in the exam room.

He listened to her breathing and asked if she'd been taking the medications. I explained she'd completed the Presidone and had been taken the Qvar (daily inhaled steroid).

A few moments later he announced that we needed to be doing 2-3 time daily nebulizer treatments alongside the Qvar and that she needs to come back next Wednesday to see if it's under control. And she needs another course of Presidone to see if that will help.

As we sat in the line to pick up the prescription the phone rang. It was the nurse from gastroenterology explaining the various test results to me. I was barely juggling talking to her and verifying the prescription information when I heard Sadie say "Mom!"

"Hold on Sadie. I'm kind of busy."

"Mom. Mom."

"Just a second honey. It's the doctor's office."

It didn't even click in my head. I'm so used to people saying "mom, mom, mom" all day and it didn't dawn on me that this is the child who doesn't interrupt conversations, especially on the phone.

When I hung up she finally said, "Mom. I think I need my inhaler." and it was clear that she really did. And she was sick to her stomach from waiting too long, even after she could breath again.

So major lesson learned. And I've explained that she doesn't have to ask to use her inhaler at home and that if "mom" doesn't work because I'm distracted to try "help!" instead.

That is basically what's gone on lately. I'm really hoping we have this under control soon.

And now it's time for another nebulizer treatment.

Friday, March 22, 2019

A Toddler, An Update, and A Gastro Appointment

Yesterday was Tessie's very first gastroenterology appointment to try to figure out why she's having tummy troubles. And it was interesting to say the least.

The resident who we say before we saw the doctor who had treated her back when she was a tiny baby in the PICU, went over her entire chart with me, and while going through it he said "so she has Segawa Syndrome?"

"Um? I don't think so? I have never heard of that. What is it?" I replied.

"I'm not really sure." He said. "I had to look it up before I came in here to talk to you, because I'd never heard of it either. Did she used to fall down randomly a lot?"

"Oh that. Yeah. She would be fine, crawling or walking, and suddenly she'd just fall over and over again. They thought they were seizures, but her EEGs are all normal."

"But no one ever told you she has this diagnosis?"


So he's thinking she doesn't have the diagnosis. I'm guessing that maybe a doctor at the hospital during one of her stays suspected it and put it down and never removed it.

I don't know.

I'll be asking her primary care doctor and neurologist about it at her next appointments, which aren't too far off.

But, back to gastro matters.

They are leaning towards thinking this is an allergy issue. Which is good, I guess because a mild allergy is not anything more serious.

But which is sad because she loves all things dairy and they are seriously suspecting dairy.

And because when we tried soy, almond, cashew, rice, and coconut milk she also got really sick, he's having her drink pea milk. We're just hoping that doesn't make her sick too.

So here's a bunch of Tessie cuteness (she was "talking" up a storm and making so many cute sounds) and even more of what happened in the appointment:

And while I've been thinking about gastro appointments and sensory issues a lot lately, as Patrick heads into his first feeding therapy eval, which he desperately needs, I made a video about why I wish we hadn't done baby led weaning.

I don't think that baby led weaning is necessarily a bad thing. I think it's totally fine for developmentally normal babies.

But I think it can be a real problem for kids who have developmental delays and that's why I wanted to share our experience using it for our last three babies.

Meanwhile I've been going through a parent training that I did with Maggie again with Tessie.

And just like with Maggie, this fantastic training has been having really positive results.

So I wanted to share a video of us using the technique to interact and play:

And another video of us using it to work on practicing sounds!

And since my last post I have published two more chapters to my novel over on Wattpad!

That is it for today because we need to rush off to OT and speech right now! Hope you are having a great Friday!

Tuesday, March 19, 2019

Run Aways and Writing

I wasn't planning on taking any sort of break from blogging.

But then February acted the way that it always does, as the longest short month of the year, simultaneously rushing and crawling by, so that I wondered how one month could be so busy and yet so torturously slow (and also cold) at exactly the same time.

We wracked up snow days until we were in the double digits and all wondered when it would actually be warm enough for any of the kids to even ask to play outside again.

Which is how we plowed through, eyes on the prize (spring) into March, knowing that sooner or later, unless we're spinning off into an ice age, it has to get warmer eventually.

Unfortunately you throw in a tiny bit of non sub zero temperatures and some people get more than a little restless.

In the last few weeks I've argued with small people about whether or not we needed to bring jackets when it was 36 degrees outside and whether tank tops were appropriate when the mercury in the thermometer hit 44 (they say no and yes, respectively to those questions).

And that likely contributed to our major St Patrick's Day drama.

I was planning on a quiet Name Day celebration that included Mass, followed by then letting Patrick pick out lunch and a cake for a small family celebration at home.

While I was making lunch though, things took an extremely unfortunate turn.

Sometimes the double cylinder lock on the front door doesn't quite turn all the way. That is to say, it feels like it twists, but the bolt inside doesn't quite fasten. Usually you can feel it. Sunday, as we brought the rush of kids and cake into the house, we didn't.

We were home for about an hour, and lunch was almost ready, when Paul walked into the room and asked why the door was open. I asked what door it was, but before he answered I knew the answer. And I knew that it could only mean one thing.

He would only ask "why is the door open" if it was the front door. The front door would only be open, if she were gone.

I ran outside.

I looked east and west, the way the road outside our house runs and there was no one in sight.

It was the worst feeling, knowing she was already so far away I couldn't see her. I headed east, figuring she would go the way that we usually go and when I hit the frontage road, already on the phone with 911, I headed south, making another guess.

The 911 operator quickly asked if I was calling about the five year old running near the highway after I said my location and when I said "yes" she said that they knew about her and the police were on the way and hung up.  I kept running and called back, quickly saying that I was the mother, that they needed to know, she's autistic and barely verbal. That she's a runner. That she is drawn to water. That she can't swim.

I said everything that I could think might be a matter of life and death, gasping out the words, as I pushed on down the road. Paul was somewhere back behind me, locking up the house and getting in the car. He hadn't had his shoes on and I had a head start.

She might be near the highway, they said. They couldn't give me an exact location, they went on, in case they were wrong. Paul pulled up and so did another woman, who could tell by my panicked expression that I was searching for the lost child that she had seen moments earlier.

Then the dispatcher in my ear told me that she believed that the police had her.

Yes, yes that was right, she was checking to make sure. The police had gotten her.

She was in his car.

The woman in the stopped car pointed us in the right direction, because the dispatcher still couldn't confirm where they were, and off we went.

From the top of the highway overpass we could see the police car at the bottom of the onramp below, lights flashing.

I held my breath.

She had crossed the bridge and run down the onramp.

Later we would learn that cars had attempted to block her but she had darted down past them closer and closer to the highway until the police officer had gotten there and jumped out and grabbed her and scooped her up.

He had known who she was.

Because of the flyer.

He brought her home and we looked back on the tape together from the security cameras and realized that she had only been gone for seven minutes, while I was in the kitchen cooking and while the other kids were playing in the back yard (where she had been a short while earlier before discovering the unlocked door).

In seven minutes she had put serious distance between herself and our house.

When I watched the video though, it made sense, because she was sprinting the entire way.

And she wasn't alone.

Tony, our small, extremely timid chihuahua, knew that she wasn't supposed to be out of the house and didn't know what to do to stop her. So he went with her.

We didn't realize it right away because after six minutes he came back on his own and was already in the house (panicking), and in all the rush and panicking the humans were doing, no one noticed the tiny canine.

He's being hailed as our own tiny hero though and you can tell he's quite pleased with himself now that she's back.


On an entirely unrelated note, I wanted to get the kids Easter Baskets done before Lent this year 1) so that I could focus on Lent and 2) because Dollar Tree generally runs out of seasonal candy extremely early and so, before Lent seemed like as good a time as any.

So the kids' baskets are made up, and safely tucked away, awaiting the end of Holy Week and I made a video in case anyone wants ideas for a wide variety of ages:

And in other Easter related news (because checking things off my to do list early is high on my to do list these days), I also managed to hit the Once Upon a Child Easter Dress Wear Sale on it's first day, to get all the kids' Easter outfits for this year.

They were all pretty excited by what I found:

A lot more than that has happened of course (there's probably about forty other videos over on the channel that goes into much of that), but I've already written so much and there's clamoring from small hungry people who need me to make dinner ASAP.


Oh! But before I go.

I finally decided that my finished novel (one of them anyways) wasn't doing me any good just sitting around, collecting dust, with no one reading it.

So I decided to publish it on Wattpad. There are currently five chapters up and I'm updating it on Mondays, Wednesdays, and Fridays for anyone who's interested in reading about dragons and fantasy and things that are entirely different from what I normally talk about here.

And that is it for today. Here is hoping that the second half of March is much more boring than the first half.