Tuesday, April 9, 2019

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!

 

Tuesday, April 2, 2019

World Autism Awareness Day 2019: Do We Light It Up Blue?

A lot has been going on and I have a lot to tell you about in an upcoming post, because the last week was pretty hectic.

But I'm pausing all that because today is World Autism Awareness Day.

And I have a complicated relationship with that day.

Because in 2019 I don't really feel like "awareness" is what we need to be working towards.

We need acceptance.

We need to accept people on the spectrum for who they are, and support them, and welcome them into our communities as valuable members. Because they are.

And so this is my little contribution to World Autism Day 2019, from one mom who doesn't "light it up blue":

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?"

"Nope."

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.

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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.

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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.

Monday, January 14, 2019

Lucky Ducks and Another X-Ray

The stressful gastro saga continues (accompanied with random pictures from our weekend to lighten up the ugh factor).

In the last post I explained that on Wednesday morning I called the GI office and told them that the after six days of colonoscopy clean out protocol for a certain little kid in the house, things weren't going well.

They sent us for an x-ray, gave the kid a two day break, and told us to start up the clean out again on Friday.

So all weekend that's what we did, focused on Monday, when it would be done, the ninth day of this horrible process, and we'd go in for another x-ray that would hopefully say that things were "good enough."


The progress that occurred this week gave no indication that we'd reached a point that they would consider "good enough"... but doing the same thing over and over again was beginning to feel like insanity.

And I have a kid who has had to miss the first week back to school (because you can't really go to school during this whole process) and who desperately doesn't want to miss the second week.

At six a.m. this morning this particular kid kept begging me to ask their teacher if it was okay if they went and I kept explaining that we just had to get their tummy a little bit better for that to happen, while wishing desperately that I could make it happen so that they could go and run around on the playground and play with their friends.

This morning I called gastro first thing to tell them we'd completed the additional three days of the process and to see about the x-ray.


The urgent nurse line went to voice mail (the non-urgent line has a two day turn around and that's why this is "urgent").

I left a message and checked everything off my to do list that I could do. I had a window of time, midday when we could do the x-ray with just me and this particular kid, without hauling siblings along with us, or having to go late at night.

"Please, please, please, have sent it." I whispered as I drove a couple of hours after I left the first message.

But it wasn't sent and no one was calling me back.

So I called his pediatrician and spoke with the nurse there. I explained that last week his doctor had told me to use the x-ray that we already had and had promised me that if we needed another x-ray he would order one ASAP (gastro later also told me to use that x-ray when they called, so they knew that it had been used).

Well, now we were supposed to get that other x-ray, and I couldn't get ahold of gastro, so could he maybe send that order in like he'd offered to, so that I didn't have to bring all five kids along to the hospital after school?


I knew that the nurse, who'd been there during appointments when I'd had to do exactly that, could picture what that would be like.

Unfortunately his doctor wasn't in the office today, and it might take a while to get an answer back about whether they could order the x-ray for us.

I picked the kid up and we went to Dollar Tree so this particular child could pick out six small presents for doing so wonderfully through all of this.

"Six is so many!" were the words I heard from the back seat.

I called radiology. Any chance the order was already in? No, they didn't have anything new. I hung up the phone.

The phone rang again there, in the parking lot at Dollar Tree. It was the nurse from gastroenterology returning my call.


It doesn't sound like things are where we want them and we have no record of wanting another x-ray. Please continue with the cleanse.

I took a deep breath and asked her to double check with the provider. I was certain, totally certain today was supposed to be an x-ray. And this is painful. Really painful. The first five days were okay, but now it's hurting. I don't want to keep pushing this thing if we don't have to. We need to check and see if this is enough.

I hung up the phone and stared at the screen and screamed internally.

I know it's nobody's fault. It's just hard to get little things done and it's already a hard, exhausting process and it's already dragged on far too long (the cleanse). And it's hard not to get discouraged by the fact that it doesn't seem to be working.

We lingered as long as we could in the area around the hospital before driving home so that we could get the other kids after school.

We'd made it the thirty miles and had been in the house for ten minutes when the phone rang. It was gastro again.


They had wanted an x-ray.

The order was in. We could go to the hospital at any time now.

"Thank you." I said, feeling completely drained. And now to decide between having all the kids come along, or going super late.

Fun times.

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Meanwhile we did have some really fun times yesterday.

I found a Lucky Duck Game on clearance for $10 at Walmart and the kids thought it was basically the best find ever.

Maggie played it with the boys, which I think is pretty much the first successful game I've seen her play with them, and it was pretty wonderful.

I still had to help her, but not really any more than I had to help the boys remember whose turn it was and not to forget that they couldn't just randomly start grabbing ducks in excitement.

All in all a pretty successful game time.

Saturday, January 12, 2019

Stress, Surgery, and Haircuts

The new year came out in a rush of things that I knew that we had to do, but that didn't make the last couple of weeks any less hectic.

And stressful. There was definitely heaps of stress mostly caused by one particular doctor's appointment for one of our younger kids.

I'm not saying which kid it is, because gastro issues aren't fun, but I will tell you what happened since we have quite a few kids and quite a few of the kids are still little.

I took one of our littles to an appointment at the Children's Hospital for an issue we've been dealing with since summer. This particular little kid has already had to go through three colonoscopy prep clean outs and I thought they were doing better. Definitely better than when we first got a referral to gastro.

The doctor thought otherwise.

The little progress that had been made over the last six months since the process had started, and three months since we'd last seen them, wasn't enough. Even with two daily meds that we faithfully give this child every, single, day.

We'd even gone along with the GI suggestions that are common with these types of issues to take this particular child to a therapist, to make sure the issue wasn't psychological, and had returned after a couple months of visits with a message from the therapist that they needed to figure out what was going on because he believed that it was 100% physical.

They ordered a three day colonoscopy prep clean out for the kid and I gasped.


To be clear, they'd just said to prepare a colonoscopy clean out every day for three afternoons and give it to this particular child. If it didn't work (as in have colonoscopy worthy results) by the third day, we were to call them, and prepare for a forth day.

We could stop at any time if the results looked good.

But she said to expect more than one day.

At the time, I thought three sounded so long.

A week and a half later I'm glad I didn't know what was ahead of us.

Three days passed. Little progress was made. I talked to the doctor on call because it was the weekend. He said to repeat the clean out for two more days and to call after the fifth day.

I sighed and we did it. Five days sounded impossible, but we were already three days in.

Days four and five weren't too bad. The kid was a good sport about it, faithfully drinking their sippy cups and on those days they didn't seem to mind it as much. But the drinks weren't successful in doing much either.

On day five I called back and gave them the news that we still weren't seeing anything like the results they wanted.


I carefully went over exactly what I'd done, and how exactly I'd followed their instructions for the third time, and then the fourth time, until they were satisfied that I really hadn't messed it up somehow and that it really wasn't working.

We needed to do a sixth day they said.

And the sixth day was when things got bad and the kid got sick and after that we were at the hospital for x-rays confirming there wasn't a blockage, it just hadn't worked. And my kid was hanging out with the x-ray guys who were giving them an action figure that they had found in the sticker box and stickers and what this particular kid really wanted, a rubber band that had fallen off of one of the rounds of stickers.

The next day I got the call that we needed to do three more days of clean out.

I may have begged and pleaded and said I don't even know how it's possible when this kid feels this sick at this point when drinking this stuff.

Isn't there any easier way? And I meant any easier non-surgical way.  There was not.

And they said, you have to, you absolutely have to, we need to complete the clean out.

Midway through last nights colonoscopy prep drink party, when this particular kid hit the wall and "couldn't" drink anymore I excused them from helping pickup toys (let's face it they weren't doing all that much anyway, mostly following the bigger kids around while they were doing their chores) if they finished their drink.

I hadn't really meant for this particular kid to be cleaning up when I said "okay guys, time to pickup" anyways. The kid in question flopped down on the couch and drank and drank and that pushed them through day seven.

We have two days left in this newest prescribed span of time. And then back to the hospital for another x-ray. I am so ready to be done and I know this particular little is more than ready for it to be done.

I'm so afraid that it isn't going to work (since it hasn't worked much so far) and that they're going to say we need to keep pushing through more days.



Meanwhile, in the midst of all this, Sadie had two big days.

Around the new year she started begging me to chop off her hair.

Are you sure? I said, mostly because in the past she's asked me to cut her hair and then changed her mind when it was done. This time I wanted to make sure that she was sure.

She assured me that she was absolutely certain and after giving her a chance to change her mind for a week, and being certain that she wasn't going to, I did what she asked.

She told me that I could record it and I'm so glad that she did because she was hilarious.

She kept telling me that she was "lightheaded" because she thought that lightheaded meant her head felt light from not having as much hair.

She's such an awesome kid.

And I'm really glad that she likes how it turned out.



The next day it was time for her surgery.

We got out of the car at her surgery, which I wasn't planning on vlogging in any way shape or form and she asked where my camera was and why I wasn't recording.

I told her I hadn't planned on recording anything, and she said that she wanted a vlog about her day and her surgery. I pointed out that I'd left my camera at home and she pointed to my phone and said "what about that."

So I laughed and filmed bits of her day, and she got her video.


And she lost her adenoids in a very successful, easy surgery where she had hardly any pain afterwards.

She was the most excited when the anesthesiologist told her that they would put in the IV after she was asleep with gas, because the IV was what she was the most nervous about beforehand.

And we're all pretty excited that she can now, for the first time in her life, actually breath through her nose.



In the midst of all this, my car ended up spending a few mornings at a tractor mechanic down the street from our house, where they drilled into the frame so that we could connect a new harness for Maggie, to the frame of our car.

She is little, but she's so muscular that she's outgrown the weight limits on most five point harness car seats. It took a bit for us to figure out what came next, but we finally got the special harness, and another special strap, and a special seatbelt lock and altogether it seems to be working.

The only problem was that the special harness had to be drilled into the car frame. But the guys at the mechanic place down the street can fix just about anything and they were able to move the brake lines and drill the harness hardware into the car and now she is set.

For now at least.

And she seems pretty excited about her "big girl" harness with a booster.



And during all of this while I was picking up a few little prize/treats at Dollar Tree I realized that they were putting out their Valentine's Day items already.

Now I don't know if this is the same everywhere, but where we are the seasonal items at Dollar Tree sell out fast. The cashier told me it's not unusual for them to sell out in a single day at the store I usually shop at near Maggie's therapy center.

Which is why, when I saw a mermaid box of chocolates I knew that I needed to stop then and there and change my plans from a quick trip to a quick trip getting the kids their little Valentine's Day gifts if I wanted to get them at Dollar Tree.

And I made a little video about it because Dollar Tree has some surprisingly neat stuff. Ours even had mermaid fabric pillows shaped like hearts (so I guess you know what Tessie's getting with her chocolates)!



And that is what has been going on with us and keeping me so busy that I haven't even been able to sit down and get out a blog post in the last two weeks.

I'm hoping the next couple of weeks will be a little less eventful.

Thursday, December 27, 2018

The Search for the Christmas Pickle and Other Great Moments

Merry Christmas! 

The first morning of the Christmas season has come and gone (and who knows how many more before I finally finish this post) and the most exciting moment may have been when the kids raced downstairs to find the pickle ornament in the tree.

The night before Paul had teased me that Sadie wouldn't find it. 

"Oh yeah, put it so low that the almost six foot tall girl will never see it!" he'd laughed as I hid it where every kid might have a chance of finding it.

"I can't put it higher than the littlest kids can reach!" I'd said, even though I doubted Tessie would actually be looking.

But when Sadie flew into the room, the first thing that she said was "it can't be above this high, because mom would never put it higher than the littlest kid could reach!" and she was suddenly circling the tree crouched down, on a serious mission to find the pickle ornament before anyone else.

And find it she did. 


Tessie believed that every present was a family gift and enjoyed the day thoroughly.

The only presents that weren't being freely shared with her were the ones that were too tiny for her to play with since she's definitely still at the "everything goes into the mouth" phase at two and a half.

She was, however, especially interested in these tiny toys, and would try to swipe them (there weren't many, only a couple) and then sneak away upstairs into the Orange Play Room to hide. I snapped this picture after catching her absconding with an LOL doll downstairs. Once she realized she was allowed to have her Catboy doll she came out and alternated between jumping on the bed and hiding under the covers for at least an hour, which is her next favorite activity.

It was also definitely a good way for her to take a break from all the noise and chaos of her brothers and sisters.


Her other favorite thing to do was stealing Bopa's chair.

Because it rocks and she realized that it rocks and she thought that that was pretty amazing.


What we didn't know at the time was that we were about six hours away from a stomach bug full out striking Tessie, James, and Maggie. But I am just very, very thankful it held off until after Christmas day.

Well I can't say that we didn't entirely know that we were starting to get sick. It is definitely one of the reasons the kids and I were in pajamas all day. I'd been feeling like I was fighting something off all week and so had Sadie. But we seemed to just manage to fight it off as the little kids completely were overcome by the bug.

Thankfully they seem to be completely recovered now.


The #1 present of the day was definitely the Scruff-a-Luvs. I can't explain the attraction but three out of five kids are obsessed.

I can say that the very best thing for these little fur covered balls of glue is to toss them in the washing machines. The kids tried to wash them by hand and they were a horrible mess and were still covered in glue afterwards. 

After a day of barely being able to keep it to myself how terrible they looked, I put them through the wash with some sheets and they look...somewhat less scruffy and slightly more loveable. At least they're slightly fluffy now.


I think that  one of the most impressive parts of the day was watching Maggie share her presents with Tessie. I knew that Sadie would be fantastic with her tiniest sister, and that her brothers would have varying degrees of success or difficulty if she mistook their presents for her own, but Tessie was mostly interested in what Maggie had. And Maggie let Tessie play with her all day long. 

She even gave Tessie some of her candy. I could hardly believe my eyes. 

The littlest member of the family was definitely spoiled with cuddles and attention and love all day long. 


And I did manage to record much of the excitement of the present opening of Christmas morning.

I think my favorite part was when Sadie and Patrick brought out the presents that they had gotten from the student store. I loved opening mine but my favorite part was seeing what they had given Paul (and each other).



And of course I had to capture the fun when we headed over to Nani and Bopa's.

There is so much room to run there, even when they're inside.

And run they do.


Tessie finally got to see her giant mermaid pillow and her reaction did not disappoint.

She took it out for a spin before she fell asleep on Christmas night. I love watching her with it.

It's so relaxing.



And this was probably the least relaxing day of my month.

Christmas parties at school kind of stress me out. Even when they end up being fun!



That is it for today. Hope you are all having a wonderful Christmas season!

Monday, December 24, 2018

A Scare and A Christmas Superstore

Before today the kids and Paul, and really anyone who'd walked across a parking lot or road with me and the kids probably thought that I was a little bit paranoid about safety.

Having Maggie with her tendency to sprint and dart and not be aware of danger sort of made me that way.

The accident a few weeks ago and that up close look at how badly a vehicle can damage a human body, even going from a stop to hitting someone a short distance away, didn't really help either.

We've talked so much about looking both ways before crossing the street in the last few weeks, and about always peeking out around the edge of the bus and being careful even if the bus stop sign is out and you think the cars should be stopped, that I've lost count how many times we've talked about it.

But we still had a very, very close call today that left all of us shaken.

Today we took a very special trip to visit a store that I've been excited to go to since we moved to Michigan. Since we moved here in 2011, that basically means I've been waiting 7 years to make the 90 mile trip to see the biggest Christmas Superstore in the world.


The store didn't disappoint. It was absolutely amazing and the kids (and grownups) had so much fun exploring it's many acres of aisles and marveling at it's delicate, sparkling baubbles.

After checking out at the end of over an hour we visited the chapel on the edge of the parking lot and looked at three beautiful outdoor nativity scenes and then made our way back to the car.

I was leading the way, pushing the stroller.

Sadie was right behind me. My mom was next to her, holding James' hand in her left hand, and Patch's in her right and my dad was a little ways behind my mom.

I am always conscious of brake lights and I've sort of trained Sadie to be the same way. My mom is exactly the same way (I come by that particular trait honestly) and she never saw them either.

Instead, without any warning a car came to life and immediately moved backwards. It was just behind me and I heard my mom and Sadie scream and I turned quickly, to hear my mom say that she'd only barely been able to yank James out of the way to keep him from being crushed.

The car slowed and looked at us and then sped away.

And it was only then that I found out that they had actually hit Sadie.

She was okay, thankfully. Her thick winter jacket had born the brunt of the blow. The worst of it, she said was that her legs wouldn't stop shaking. And by the time I was sitting in the car, mine couldn't stop shaking either.

We went out to lunch. And then we carefully navigated the way back to the car. And James and Patch were a little more willing to hold hands and a little more watchful of the still cars we walked by as we returned to our mini van.

And as this Christmas Eve gives way to Christmas Day in a few more moments I am just so, so grateful that all the members of my family are still healthy and whole and that that little accident this afternoon wasn't much worse than it actually was.


Sunday, December 23, 2018

Tessie Rocking Her PECS Binder is the Best Christmas Gift

Tessie has been using a Picture Exchange Communication System book (also known as PECS) to communicate at school for a few weeks now. I went through the first training near the time when she started and then I completed the second training this last week.

On the last day of school they handed over a tiny white binder full of tiny velcro covered, laminated photos.

I'd been warned that she might be resistant to the idea of using her binder at home. 

So far the only thing she's been resistant to is the idea of fetching her binder herself, which is somewhat complicated by the fact that I have to protect the binder from a certain binder destroying mermaid at all times. 

Meanwhile, Tessie is rocking the PECS binder. She's been using it to tell me what's on her mind at all times: 


The first time she picked it up was to tell me she didn't want a bread stick right then. She wanted pizza. 

And then a sip of water. And another sip of water. 

The next morning I handed her a bowl of cereal and she handed me a strip of paper and pointed at the words "I want cup" as I read them back to her before I'd even had time to walk back into the kitchen to grab her cup. 

She was on a roll and was letting me know exactly what she needed at every turn. 

I hadn't gotten much of it on video though, until today at Nani's house. 

I know that Tessie loves oranges. She had already had three. And I realized that her binder actually had an orange card in it.

So I peeled an orange, set up the camera, and sat down to see what would happen. 

And Tessie gave the greatest demonstration of how to use her book that I possibly could have imagined. 

I thought she might have a bit of orange and then I could explain how it worked. 

Instead, any time I would start to talk about her book she would appear to be reminded that she had a book and she would race over and use it to ask for another orange slice. 

And as a mom to a kid who previously couldn't ask for anything at all it was a pretty amazing experience. 

Which is why I am elated to be able to share in this video, because the content is pretty much my all time favorite.

I am so proud of Tessie. 



And after two days of watching Tessie, Maggie who would have nothing to do with PECS when she was three is now very interested.

Yesterday she used the book to tell me she wanted a cheeseburger.

I think we might have to give this whole PECS thing another try with Maggie again too.


I have to say that I am going into this Christmas feeling pretty grateful. 

Saturday, December 22, 2018

Tiny Houses, Big Lights, and Lots of Parties

Today is the last day of school.

Yesterday there were three Christmas parties for Sadie, Patch, and James.  Two of those parties were at the same time at different schools, which required Nani and I to go to the parties and switch midway through. The plan worked out surprisingly well.

I was momentarily excited that next year those three particular kids would all be at the same school until I remembered that next year Sadie would be in middle school (I silently scream every time I read, write, or think those words), and the boys would be at the elementary school and so we'll basically have the same problem next year, only with different kids at different schools.

It's always an adventure in time management, but we always seem to find a way to make it work.

Meanwhile someone else was really ready for school today!
Nani took on the brave task of helping Sadie wrap small gifts for the small army of teachers, therapists, paras, behavioral technicians, and aids that helps make our world go round smoothly and do you know what we discovered?

There were over thirty of them.

It was only that low because two of the centers had told all the parents that all or some of their staff couldn't accept gifts because of ethics concerns. And the number was still over thirty!

And as I was texting this morning, trying to work out a paperwork roadblock, I realized that there were two more people that I completely forgot along the way, that I won't be seeing before Christmas.

Small army does seem like an entirely accurate description of the amazing people who have become a part of our lives in the last five years.

At least last night I finished decorating the inside of our house.

Or at least I think I have.

I finally got over the fear of things being broken that kept me from decorating for so many years.

Part of moving past that fear is that is that Maggie no longer goes around breaking things for no reason and while Tessie is growing into that talent, she can't reach most things and I've gotten good at decorating at very high levels.

And Maggie really seems to enjoy the decorations.

This year, for the first time ever, we took the lovely North Pole and Disney Villages that came from Paul's childhood out of the boxes and set them up on a counter in our back hallway.

They are in a safe place, that the kids don't have open access to, but it's been lovely to be able to take them back to see the beautifully lighted little houses and people.

And I had so much fun setting them up.

And last night, after all the decorations were finally in place, I made a video recording of what all the decorations looked like before the kids woke up and everything started to move and be played with and the house looked lived in again:



Do you know that by the time I finish a post (at least right now) it's an entirely different day than the day I started writing on?

I started this post yesterday morning. And then I worked on it last night. And then I fell asleep at some point with the computer on my lap. And here we are again.

But starting by saying that "today is the last day of school" really makes no sense anymore, except I'm not about to start over or this will never be posted.

We're on to the first day of vacation, and Tessie ran around wearing a voice recorder all day, for a study that one of the PhD students at her school is conducting, that we've done once before through a different university.  Still they wanted the data for her school too, so we're doing it again.

My very favorite autism activity of this entire month, and possibly my favorite Christmas activity that we've ever done, was this year's Wonderland of Lights at the zoo.

I remember going a few years ago with Maggie, before Tessie was born and being so stressed out.

This year was different though. There were more kids, because we have more kids, but there were also more grown ups.

And it was magical:



We also made the drive out to see the Michigan International Speedway Christmas lights for the very first time.

I think that this is now going to become a yearly Christmas event for us.

The kids loved driving through the light arches especially.

And maybe next year Tessie (who managed to stay awake for the almost hour drive to the lights) will stay awake for more than five minutes of the drive through the lights:



That is it for tonight, before I get too tired and fall asleep with this computer on my lap and miss posting for another day in a row.

I hope that you're Advent preparations are going well and that you're nearly ready for Christmas!

Saturday, December 15, 2018

Of Christmas Trees and Little Victories

The last week has been more than a little exhausting as various kids have been home sick with what seems to be two different bugs (one stomach bug and one respiratory bug) and while they've been resting I've been slowly decorating the inside of the house so that hopefully, it will actually be completely decorated by Christmas Eve.

Maggie had asked and asked and asked when we would be going to get our tree and I had big plans for last Saturday (thankfully before everyone began dropping like flies to this round of illnesses).


I had read in a local Facebook group that there was a tree farm not too far from our house where they took you to retrieve the trees on horse drawn carriages. I knew that would be a big hit with all five kids. There was also an event that morning at a local city park, with a tour of their historic buildings, various historic demonstrations, and hot cocoa and cookie decorating.

So we kicked off the morning with cocoa and cookies and then moved on to finding the perfect Christmas tree, being pulled around the forty acre farm by Perchrons, which was pretty fun for adults and kids alike, and then finally heading home so that Sadie and Paul could race off to a birthday party at a local skating rink.

December weekends are busy.


This is a glimpse of our time visiting the historic cabin and having cocoa and cookies.

Maggie's language has just exploded lately. Everyone at school and therapy is so excited. And of course, we're pretty thrilled too:



Then it was time for tree hunting.

This farm was so much bigger than the places that we've gone to in the past. It was $45 for any tree on the property and so many of the trees were enormous!

It took a while to find down the perfect tree (not too big for our living room) and flag down a team of Percherons to haul it back to the car, but once we did we were ready to head home and get warmed up. It was a chilly day!



Then it was time to decorate the tree.

It was kind of amazing.

If you've been here for a long time you may remember the years when we had tiny fake trees high up on our mantle, trying to keep them out of Maggie's reach because we knew if she got to them she would destroy them.


A few years ago we thought she was finally ready to try a real tree closer to the ground, so we got a tree and bolted it onto our old TV stand, which in turn was bolted to the floor.

And when that was a success, when we moved to our house here we got a full sized tree and bolted the stand to the floor.

She left it alone, but she never helped decorate it. And I really didn't expect that to change this year.


The first year with a real tree.
We didn't realize it was a bit too tall until it was way up there and then it was... way up there.
And those ceilings were really tall.

I set up my camera on a stand because I did want to capture the memories of decorating the tree.

I did not expect them to capture Maggie joining us and beginning to pick up ornaments and decorate the tree with us.

It was such a happy, special afternoon.

And when Tessie woke up she proved that she is following in her sister's footsteps, from Christmas' years ago, when she turned into a mini tree attacking tornado.

It's okay though.

I've learned a few tricks over the years. And the lower half of our tree is basically indestructible.



And that is what's going on here right now.

If everyone would just get and stay healthy that would be great. But it is definitely the season when everyone catches everything.

I'm just hoping they're all over it before Christmas!

Friday, December 7, 2018

Basketball, Presents, and Saint Nicholas' Day

Sadie is playing basketball and whenever I see one of the pictures that I snapped this weekend I ask myself how it's possible that Sadie is old enough to be playing basketball because it seems like just five minutes ago I was posting pictures of her that looked like this:


And now she's almost as tall as me, she wore my boots to school the other day, and when I took her to a basketball camp run by the high school, she was as tall as half of the girls running the camp.

I'm wondering when she will officially pass 5 feet 5 inches tall and be taller than me. 

I'm thinking it's probably going to happen in the next year.

She's going to be gleeful when that day arrives.


Meanwhile Tessie isn't quite sure what to think about this whole basketball thing.

She thinks it's a little concerning.

And I think she probably won't be coming to too many more games.



We didn't realize, when we went to our first game, that they actually charged admittance fees for fourth grade basketball.

I think originally we were picturing something much, much smaller than the league that she's actually in (more like the soccer league that the boys are in which had older kids officiating the games, which is not at all what this is like. This is BIG.).

When we arrived at the first home game and I saw that it was going to be $3 a person, for adults and kids of all ages, all the way down to the littlest, and then I spoke with another mom who has five kids, who told me that she paid over a thousand dollars in entry fees last year for basketball games (I think my eyes probably looked like saucers), and that some of the schools charge $5 a person to get in, I began to think that we probably would be taking turns going to games and that we would take turns taking one kid at a time to see her play as a special treat.

On the weekends she has games, she has two games, and those games are at different schools, so those entry fees most definitely could add up fast.

But it has been so much fun watching her learn. 

And she has been loving it and having fun. 

-------------

In December, one of the most popular things for family channels on Youtube to do is make videos about what the kids are getting for Christmas. And I thought it would be fun to join in so that I could actually remember what the kids got from year to year. Like a virtual scrap book in video form. And maybe it could help people who need ideas.

Don't worry (people always seem worried about this), my kids don't have access to the internet on their own, so they won't be stumbling across this video and finding out what they're getting.

I know someone was already surprised because Tessie's presents weren't age appropriate.

I did get Tessie, and Maggie, and well really all the kids the toys that they would play with, rather than trying the check the "toys for girl age 2" box, so these probably aren't "typical" toys for the age ranges, at least for our littler girls. 

I am very excited to see Tessie's face on Christmas morning when she sees her giant pillow. 

I might be the only mom of a two year old is saying that this Christmas... but I think that she is going to be thrilled... and maybe a tiny bit overwhelmed when she sees it. 




With therapy and dinner and tucking the kids into bed and getting to work on editing late into the night I almost forgot that it was St. Nicholas' Day on the 6th. But I remembered just in time.

And thankfully I'd tucked the chocolate gold coins away, way in advance, so the morning was saved and I was able to share out St. Nicholas Day traditions on our channel:



Now to get Tessie to OT and Speech and then back home for early on. Even our "days off" are busy!