Sunday, December 31, 2017

2017: A Look Back at Tessie's Year

A year ago yesterday Tessie and I woke up in the hospital after her very first sleep study and the tech looked at me as she unhooked her and told me not to worry too much because a lot of babies out grow these things as they get bigger.

I wouldn't know for two weeks that she'd just witnessed a sleep study that, when it was finally read by a doctor ten days later, and then passed on to her neurologist a few days after that when we finally made our way to PICU a doctor there would have told a nurse before we arrived after reading her chart that the very first thing that they would need to do was perform a tracheotomy the moment I carried her in the door.  

Because her numbers looked that bad.  

She had 45 central apneas and 136 hypopneas.  Her oxygen saturation had dipped into the 70s.  

But then we walked in and she looked like this and the most common phrase heard in the room was that "this is this baby?"

No one could believe that it was possible.

Which is how I ended up going home after that first trip without any sort of monitoring equipment.

Which turned into a sort of nightmare of its own.

2017 was a rough year in a lot of ways.  And a fortunate year.

I know that we are very very fortunate that she was okay and that she made it through all the nights that she slept without an alarm.

From January until March (really from June until March) she didn't have an alarm and I would watch her sleep and see her stop breathing and gasp when I touched her chest to wake her.

And I pushed and pushed and finally got a referral for a second referral.  That took a month of phone calls.

We went to the children's hospital.  Once they got the referral it only took two days for them to get her in for a sleep study.  By that night they had her on a monitor.

I thought our troubles were over, mostly because I didn't yet understand how her monitor was something that she would have to prove over and over again that she needed.

Every six months she'll have to show that she's sick enough (when she's asleep) to keep it.  

Which is stressful because she does have good nights.  And very, very bad nights.  

What if she's having a good night on the night of her sleep study?  

I can't tell beforehand what kind of a night she's going to have.  I can't even tell afterwards if she doesn't have an alarm on. As long as she starts breathing again every single time that she stops.

And the thing is that she is perfectly physically healthy when she isn't not breathing in her sleep.  She is strong.  She has great gross motor skills.  Her doctors have run just about every test they can think of and there's not explanation, and the "prematurity" explanation is beginning to seem less plausible to any of them as she gets bigger and is now on oxygen at night when she wasn't before (my 8 lb 12 oz, premature central apnea baby).

A couple of weeks ago they called to schedule another sleep study.  Already?  I said.  When? I asked. February.  The voice replied.  I thought it was six months. I said.  But I'd realized how this works.  The doctor says "repeat sleep study in four to six months" and they call and it's always four months to the day.  Which really adds up.  

It's the difference between three studies a year instead of two.

Especially when you're just trying to keep the monitor for as long as possible because you've seen your kid stop breathing more times than you can count, sometimes in a single night and you've asked the people who do the downloads "hey can we just buy this thing, how much would it cost?" and they got you a quote and it was well over ten thousand dollars.  

"February doesn't work for us." I said, finally learning.  "Six months out does.  Let's schedule that."  

It only took me an entire year to learn to ask.

2017 was the year when we had the very scary sleep study that became the study that had to be wrong because she had no apneas in the PICU on a good night, that was repeated and ended up being right three months later.  It was the year when she had another good night in October and almost lost her monitor again, followed by another very scary night and going back on oxygen on November.

And it was probably the year I got a reputation for pushing and pushing and pushing and believing what I was seeing with my own two eyes even when I was told that it was not possible (after someone wrote on her chart "does not have central apnea," which I found out was why no one would give her a monitor after her first trip to the hospital).

I am ready to leave 2017 behind.

2018 is stretching out before us.

In a few days we leave and take Tessie back to Boston, not for anything apnea related but for the second part of the autism study that she started when she was one.

As the child who has carefully avoided looking at us since she was a month old, and who preferred not being held from the day she was born (literally) I will not be surprised by spectrum-y results, but we shall see.

She is most definitely her big sister's apprentice:


Sometimes I think that we might not have enough mermaids around for Maggie to play with.  

Then Maggie decides to dump out about a quarter of her collection in the bathtub so that they can go for a swim and I realize how crazy that is.

There's hardly any room left for her to join them.  But somehow she always squeezes in.

Friday, December 29, 2017

The Anti Update I Wish I Wasn't Writing

Today's news is a little less happy.

When I thought about writing this post I thought that I'd jokingly start it by saying that I should have been more specific with my prayers.

I prayed that I would be better for Christmas and I got my wish.

Maybe you can see where this is going.

Does anyone remember "Sadie frowns?"  They actually
predated Grumpy James.  I'm breaking one out
for this post.
By the third day after the antibiotics ended I had a feeling that things were going in a negative direction for me.

I told myself that it was just psychosomatic, and that I was only feeling tired because I was worried that it was coming back.

By the next day it was a little bit clearer that it was more than that.

And yesterday I woke up feeling like I'd been hit by a truck.

I called the doctor's office and asked to make an appointment with my doctor.  I was informed that my doctor didn't have any appointments until February.  I asked to make one in February, and thought to myself that it was likely that I'd still be feeling like this, then. Actually February was out too because... he was retiring.  I actually cried then, tears, because I felt like he was the only person at the office who actually believed me.

The receptionist, bless her heart, went above and beyond in convincing me to make an appointment, since I was more of less ready to  give up and curl up in a corner somewhere and wait for whatever was going to happen next.

A Maggie Frown too?
I don't think Maggie Frowns were ever a thing around here.
Paul, tired of listening to my lamentations about whether this doctor (his doctor) would believe me, came with me to the appointment (assuring me every ten seconds that yes, he would), after I asked him if maybe he could fit it into his schedule a half dozen times (a big deal since he hasn't taken off time to even come to an OB appointment in about five pregnancies).

When the doctor arrived he went over the chart briefly, and asked a few questions and pointed out that I'd come in for a fever and here I was without a fever, because of course when I got to the office it was one of those moments when the generally low fever ended up measuring 98.5.

I lasted a solid ten seconds before I broke down in tears, managing to explain that I was crying because at this point I I'd been sick for so long and after the last appointment I really felt like no one believed me and everyone thought I was just crazy coming back over and over for a cold.

It took me so long to find a picture of Patch not smiling that I began to wonder
if one actually existed.
And I calmed down and told him about the filling and the 105.2 fever, and the thirty days of fever before my smart thermometer stopped working, and showed him that data in my phone from the smart thermometer, and told him that before this I was running seventy minutes a day and felt great and now I can barely stay on my feet a few hours a day and then I have to lay down and curl up in a ball to recover from the little that I've managed to do.  And while everyone else might be toasty warm I'll be in layers of socks and pants and two sweaters and five blankets and I'll still be shaking and shivering... which isn't that unusual but I am more cold than I used to be.  Much more.

"And when the other doctor ordered the Z-Pack, I know it was just to humor me, and she said not to take it," I half gasped the words, since I was talking so fast, "but of course I did, because I was desperate, so desperate, for anything, and it made me better, so much better and I was up and running around and I felt like myself all day long.  And then I finished them.  And now I'm sick again.  And everything hurts."

I'm not as tired as I was before, but it gets worse every single day.

I knew James wouldn't let me down with a frown (or a hundred)
to lighten the mood.
He said that he suspects an infection, and while he can't be certain, he does specifically suspect a blood infection, because this all started the day after that four hour filling that was below the gum line with lots of bleeding.  Besides that there are little things, my spleen's enlarged, some elevated liver counts, but almost everything else has been normal.

So now we're waiting on the blood culture they took tonight, along with a lot of other blood work, and a referral to infectious disease to try to work out if this is some sort of bacteria in my blood from that filling back in November.

Tess also doesn't really frown because she has her thumb.
So after looking through hundreds of Tessie pictures... this is as close as it gets.
I think that's a good thing.
He did stress he does believe me (probably remembering that I started the appointment bursting into tears very much fearing not being believed after the previous appointment), and that this most definitely isn't normal, something is wrong, now that we're going on two months since whatever it was happened that took me from running around feeling healthy, training for races, halfway through a 5k to 10k program, working on increasing my speed to... how things are now.

And that is the latest.  I guess that was a long way of saying I am sick again and would love and appreciate your prayers.

The last weeks break was lovely... and I wish I was not writing this.

Thursday, December 28, 2017

Maggie and the Holiday Break that She Wished Wasn't

Maggie's internal clock is fantastic.  She knows which day of the week it is every day. And she knows which activity she has on any given day of the week.  

If it's Saturday she knows, without being told, that it's Saturday and that she's going to ride horses.  When she wakes up in the morning she tells me "riding lessons.  Horse back riding lessons?" And than looks at me expectantly until I confirm. 

If it's Monday she knows that it's Monday and not only that it's Monday, she also knows if it's one of the two Monday's a month that her class takes a field trip to go to swim lessons at another school.  

She knows which therapist she has on Monday and Wednesday and which she has on Friday, which is rather impressive considering she has at least sixteen amazing people who work with her regularly.  

Every single Sunday when she wakes up she asks "Mass, Jesus, doughnuts?" 

So I should not have been surprised, despite my explanations of "holidays" and "no school" and "Christmas break" when she walked up to me seconds after the presents were opened on Christmas morning.

She wouldn't have been going to school as it was.  She was sick, and we had six inches of fresh snow and it was coming down hard, and it wasn't expected to stop, except for a brief break some hours later in the day.  We were snowed in with our two wheel drive van.

"Bus?" She asked expectantly.  "School bus, please? Lunch, please? Backpack, please? Jacket, please?"

I began my explanation of the holiday again and as you can see, it was convincing.

She wore her jacket, for the next ten hours.  At six, when she was certain she wasn't going anywhere, she took it off.  

The next morning we had the same conversation (along with a conversation about her locker, and class).  She wore her backpack and jacket all day.

And again yesterday.  Which is when I texted one of her amazing therapists.  

She texted back.  Maggie does still have a couple nights a week of therapy during break. 

And last night was one of those nights.  

And so it was that she came home with this social story, which we will be reading this morning.  

I love it.  And I love Miss K, who quickly came up with it and put it together for her.

Maggie is so smart.  I'm really hoping it helps.

And I love that she loves school this much.

Tuesday, December 26, 2017

Christmas Tessie

When I was writing this post I had the song "Christmas Monkey" from the Curious George Christmas special of a few years ago going through my head, except my brain kept replacing monkey with Tessie.  And that is basically the sound track for this post (I'm sorry if you have a preschooler who watches PBS or Netflix and you now also have that song stuck in your head).

All of the kids had a fun day yesterday but watching everyone, even her siblings, loved watching Tessie enjoy her second Christmas.  It's been a busy couple of days and tomorrow I'll have lots to get caught up on, but I wanted to share a little glimpse of yesterday's Tessie highlights before I go to sleep:

Monday, December 25, 2017

Merry Christmas

Merry Christmas!  I hope that if you find yourself reading this tonight, that you had a wonderful day.  

I was going to do Christmas cards this year.  I really was.  Sometime this summer I came across my address book and I promised myself that I would make a habit of it again.

Back in the days before children I would have them addressed and mail them the day after Thanksgiving.  Then Sadie arrived and it got a little later.

After we moved to Michigan my card mailing fell off altogether.  Last year I designed and ordered cards and I still have them.

This year I was less ambitious when I ordered.  I designed the cards.  They look like this:

And I was planning on sending them out to family and a few friends.  

Then time began to get away from me and one day I realized it was rather late.  More or less too late.  So I made a fair dent in the cards sending them out with the little gifts to Maggie's small army of helpers, laughing at the look on James' face in the top photo every time I slipped it into an envelope.  

And then it happened.  On Christmas Eve, as we were leaving for Mass and walking to the car, my mom offered to attempt to snap a photo and for once no one was thrashing around or sobbing.  Maggie wasn't thrilled with the cold, but all in all it was a very good photo for our family.  

So here is the imaginary photo card that I wish I'd mailed out this year.  

As you can probably imagine I'm pretty excited about those five little pairs of eyes looking out at the camera.

I hope you had a Merry Christmas!  

Sunday, December 24, 2017

A Happy Update. Finally.

I think I may have gotten my Christmas wish for the year and for that reason I have an update, and it is finally happy.

I went back to see my doctor last week because I was still sick.  I'd been sick for nearly fifty days, including low fevers, and almost non-stop headaches, neck pain, and pain that felt suspiciously like my kidney infections of old since I had a fever of 105.2 on November 4th.  My doctor's office was now about to go on holiday for Christmas, and so, after three weeks without an appointment I gave it one last try.

I knew that if I saw my doctor he would concerned and probably a little bit upset that I hadn't come back sooner.  He had not liked that I'd had a fever for thirty days.  He wasn't going to like that we were now past forty five.

But he was booked solid and so I saw an office partner, who I'd never met before and she said that I was perfectly fine, and had "the common cold" with the air of someone who's time had just been wasted.

I mean, I'm sure it looked like I was big whiny baby who had come in with a cold.  She could see that I had a fever.  According to her records, since my neurology appointment for migraines three days earlier I'd lost eleven pounds (my first neuro appointment in three years since I can finally take migraine meds now that I'm neither pregnant nor nursing).  And I couldn't keep much food down.

It didn't feel like a cold.  I mean yes, I was coughing and I did feel like I had a sinus infection too.

Honestly I felt like I was falling apart.

Tess demonstrates what I felt like.

"Fine, I'll give you a Z-Pack, but don't take it. It won't help. What you have isn't bacterial. It won't do anything. I'm sending it in now.  Do not take this before Thursday.  At the earliest.  If you get much worse.  It's not going to help you at all."

"What do I do if I still have a fever?  I mean I have had a fever for over forty five days now.  I just want to not be sick anymore.  When do I come back?  If this doesn't go away. When do I come back?"


"I've had a fever, non-stop, for more than forty five days now.  At what point do I worry?"

"You don't.  You won't.  This is a common cold.  Have a Happy Holidays!"

She shuffled me out the door and I managed to check out before bursting into tears in the parking lot, while making a mental note that I would be more careful to make sure I saw my own doctor even if it meant waiting a few days.

I filled the Z-Pack because there was really nothing else to do.  And I took the first two pills that night because I hoped that maybe she was wrong and that it would help and I had been sick for what felt like a long time and was desperate.

I kept coming back to this picture because this was the day before the race.
It was literally the last time I felt okay.
And probably because I remembered the days when patients with mitral valve prolapse (which I have) took antibiotics before dental procedures... and while I know studies say it's not necessary... after you've been sick a long time... you start to wonder and look for answers everywhere, even if you logically know that if you had managed to pick up something bacterial things already would have likely taken a very bad turn.

Now to go back, so that that previous paragraph makes a bit more sense. The night before I got sick I had a cavity filled.  It took over three hours to do the one cavity because while it was small, it was in an awkward position.  It went below the gum line and there was so much bleeding they had to do something to stop it. It was pretty miserable.

When I had a slight fever the next day, I went to my race and slogged along, because I figured that the fever was my bodies response to what had happened with the filling. Later, when the fever went up six degrees, I assumed it was a virus, that it had nothing to do with that, because my kids had been sick the previous week and had some pretty high fevers.

Two days into the antibiotics I was up cleaning the house.  After four days I was outside cleaning out the mess that had accumulated in my car after not being cleaned out for two months (usually that's a weekly chore).  And yesterday I was on my feet all day, running errands and having fun with the family, and while I get tired more easily now and have to sit down more, I felt fine.

Yesterday was the first day since I finished the course of antibiotics.  I'm a little nervous that whatever it is, is going to come back.

Paul saw this one and called it my "getting into trouble" look, or something like that.
Really it was my "trying to get a picture of my hair color that didn't look ridiculous" face.
And I'm thankful it's gone.  I don't know if it had anything to do with the filling, or if it was all purely coincidental.  I mean I guess I don't even know for sure if it was the result of taking the antibiotic or if I just finally got better at exactly the same time, although I do tend to credit it, since I felt pretty significantly better within twenty four hours and improved more and more with each dose.

I just know that, right on time, I got my Christmas wish.

Thank you to everyone who prayed and reached out to offer well wishes.  It has been one roller coaster of a fall and winter so far, and I am looking forward to going to Mass today and tomorrow.


Have a Merry Christmas!  I'm so happy to share this news!

Saturday, December 23, 2017

Her Favorite Things: Equine Therapy

A couple of months ago I shared a picture of Maggie during her hippotherapy class.  At that time she was riding in front of her therapist.  

After a few months she began riding on her own.  

It very quickly became on her favorite things.  

She no longer needs to ride with someone behind her.

She's looking so grown up:

And she adores Jack, the horse that she rides.

She was also very excited when Tess got to join her.  Can you believe that tiny person is Tess at her first therapy session:

Friday, December 22, 2017

7 Quick Take Friday

Before I realized that there are no Quick Takes this month I wrote my seven this week, so.... here we go.


Last week I had a sponsored post on Facebook.

Which is both entirely my doing and also slightly embarrassing.  You see, if you have a non-personal Facebook page for long enough and ignore the regular Facebook "sponsored posts" (basically "this could be your ad") for long enough they will (or may? I'm not really sure how it's decided) give you a $10 coupon code so that you can see how super cool it is to have a boosted post.  

It usually comes in the form of "Hey we're giving you $10 to boost this post" and I'm like "Nope.  No way.  Why one earth would I want to boost that? I am not boosting an update on being sick. You literally cannot pay (for) me to boost it. I barely wrote it and posted it on Facebook."  

But they asked again on the "Finding Me" post and I thought "why not?"  

So I clicked to accept the coupon and set the limit at the amount of the coupon (half expecting the advertisement to somehow try to sneak beyond the limit, although it worked exactly as it was intended last time) and submitted it.  Almost immediately it came back as accepted and gradually began to tell me I was getting "paid views."

And almost immediately I was uncomfortable.  I mean, I knew what was going to happen.  I know what a sponsored post is.  Facebook had given me a coupon once before, but it hadn't really bothered me when I had my Etsy shops up and going.  Sponsoring the shop was no big deal.

But sponsoring my writing feels... kind of strange.  

I mean, don't get me wrong.  Facebook's algorithms can make it pretty hard to get posts out to readers, even when they do follow pages, so if I am lucky enough to get another one of those coupons I won't hesitate to use it.  

And I'll probably feel awkward about it every time Facebook gives me a cheerful little update about views until it expires in that imaginary future, too.


The first sign that the last child in the house to get sick, was getting sick (with this round of this virus), was when she lay down like this in the doctor's office, instead of continuing to fight her way past me as she tried to ransack the unsecured drawers full of supplies (and let me tell you the pulmonologist has some neat to a 17 month old supplies).    

The second sign was when the pulmonology PA said she has a very red throat.

The third was when she tried to fall asleep in the shopping cart at Target where we stopped to pick up a few quick last minute supplies after sleeping all the way from Lansing to Grand Rapids.  

I think the last of the kids has officially succumbed to whatever the virus (fourth virus) of the season is.  

On the (barely) sunny side, I'm hoping this means that she'll be feeling better by Christmas because this bug only seems to last for a couple days.

When I snapped this I thought she was just tired of doctors...

M is for Mermaid.  Or Merman.

I still haven't figured out who this superhero is, but I did speak with Maggie's teacher today and determined that none of the boys in her class are missing a dearly cherished toy, so at least there's that.

I'm guessing she loves it because of the M.  M is always for Mermaid around here.  Even on a superhero.

Do you know his identity? 


"Mom!" Patrick called to me, yesterday, from the living room.  "I caught a Pikachu!  I'm not keeping him in his ball."  

I turned to see the Pikachu, lingering near the staircase.

I just had to hope that it wasn't going to electrocute anyone.

I did dance around after catching a Delibird last night.  I know, I know I might be the last person on the planet playing Pokemon Go (okay, my Facebook Pokemon Go group tells me that isn't true... I think I just got a little bit geekier with that admission).

Anyway, here is  the Pikachu that Patrick caught:


As with the scissors it took her longer than I expected to overcome this gate.  


And now it's really, really easy for her to get past it in about three seconds.


Yesterday was Patrick's last day of school before Christmas break.  

I was worried he might have been feeling a little shy, switching schools midway through the year and starting at a new school, and having to make new friends.  It was a relief to see our little social butterfly bouncing around, including being the first one to race across the room when a special guest arrived:


The other night we were scrolling through our various Netflix and Amazon options for the movie portion of family fun night when I came upon it.  The obsession of my Kindergarten/First Grade years.  

She-Ra Princess of Power.  

I may have squealed.  There was definitely giggling.  

By the time it was on I had Patch and James convinced that it had to be The Best Thing that they had ever seen because of my descriptions.  Or that it might be nearly as cool as Wonder Pets.  

James volunteered that he was Battle Cat, because Battle Cat is Green like Gecko.  

And unlike many shows it was just about as good as I remembered it being.  

If I don't blog before then, have a very Merry Christmas!

Wednesday, December 20, 2017

Mermaid Hair

Dying my hair "mermaid" colors is not the first, nor will it be the last, unusual thing that I do, in my quest to make Maggie smile.  It worked.

I started with blue and when she saw it she said "Gil hair?" and was moderately impressed by the lengths I had gone to to obtain "mermaid hair."  

I tried pink next and then purple and finally green.

The rainbow of colors grew steadily less novel.  

Maggie loves to play Toca Boca on iPad and her favorite thing to do in Toca Boca is dying everyones hair pink.  She plays the hairstyling games, but she also dyes all the characters hair in the other games as well.

But after a few (of twelve) months the novelty faded.

Although it was fun while it lasted.

Sadie, forever sensible, was too polite to voice her thoughts, but did say:  "When I am thirty five I will not dye my hair an 'unnatural color.'"

Finally I decided it was time.  I drove to Meijer after an IEP meeting and trudged through the slush to find a $2.50 box of brown/black hair dye that couldn't have been any more boring if it tried.  I suspect that the marketing team was not trying particularly hard.

But the price was right and the little chart on the back of the box suggested that the bleached barely-green hair might resemble the rest of my hair, if it worked the way that it was supposed to.

On Saturday I put on gloves and mixed Part A of the hair dye with Part B.  I will admit to a certain level of skepticism as I put the top half of my hair in a pony tail, the skin along the edges of my scalp coated with Vaseline, and began to apply the mixture.

To begin with, the thick dye was yellow as it began to go on.  I'm so used to the bright hair dyes that come out of the bottle looking exactly like the color looks on your hair, that I was pretty certain that the almost off white dye was not going to turn my hair "brown/black."

But anything had to be better than "faded green" (I'm a fan of the bolder colors) so I kept coating it and sure enough, by the time I slipped the plastic cap over it, it had transformed into a dark shade.

And the estimate on the box didn't do the results justice.

I went downstairs once it had dried and showed Sadie.

"How does it look?"  I asked, pleased with the results.  I hadn't accidentally dyed my hands or forehead this time, so I was calling it a win.

"Hmmmm."  She said.

"Is it the right color?"  I asked.

"The right color for Maggie!"  Patrick said.

"It's like Maggie's hair Mommy!'  James echoed.

"It looks okay.  From far away."  Sadie finally allowed.

"Just far away?"  I asked, stiffling a laugh.

"Up close the bottom half is way darker than your regular hair."

So there you have it.

I really like the new color, but I have yet to impress the nine, five, or three year olds.

I'm going to say that Tessie is impressed because she's too little to tell me what she thinks.