Monday, September 25, 2017

Tessie, Cuteness, and a Waffle

While we were rushing out the door to go to Mass yesterday morning I glanced over and saw Tessie excitedly grab a waffle and I just had to capture the cuteness:

Who knew that eating a waffle could be so cute?

Sunday, September 24, 2017

Fours Years Ago Today: A Diagnosis

Facebook tells me that four years ago today Maggie was diagnosed with autism.

I didn't go into the doctor's appointment, a few weeks prior to that day expecting anything of the sort.  We were there for tummy problems that just wouldn't go away.

The resident came in and spent forty five minutes with us while Maggie bounced off the walls and played with her stethoscope.  She said it was unbreakable until Maggie snapped part of it off and handed it to her.  She was awesome with Maggie.  And then she looked at me and said "I am one hundred percent certain that she is on the autism spectrum." and somehow I didn't fall out of my chair.

I didn't know anything about autism aside from stereotypes.  But the stereotypes told me that it was one of the scariest things that I could have imagined coming out of that doctor's mouth.

She gave me some papers and some numbers to call.

I went home and called the line to have her evaluated and went to the library the next day and checked out a stack of books and made a list of behaviors that the books told me were red flags.

When the woman doing the initial interview asked why I was concerned I opened my notebook and had an entire page of teeny tiny words printed in neat lines of things that she did that the books told me were not "normal" for a three year old.

I didn't give myself much time to be scared though.  Not really.    As with Tessie's central apnea, my response to stress seems to be throwing myself into learning everything I could, and reaching out to anyone who might be able to teach me how to help her.

A lot of people told me that everything was really the same and that nothing had changed in the days following the diagnosis, because she was the same happy, beautiful little girl.

And that she was the same little girl was true.

But our lives were also about to change drastically in ways that would have been scary to me then.  The neat little homeschool family picture that I'd had in my mind since before Sadie was born was about to disappear.

In the two years that followed I would sit in thousands of hours of therapy sessions and our carefree schedule would become much more structured.

I didn't know that what was coming next was going to better, because it was the best thing for us, the future that worked and benefited my children and family, instead of being some bright pretty photogenically blog-worthy dream that I had imagined.

On this anniversary of sorts I've been sitting her and looking back over my fears back then, and the reality that is our lives today and how different they are from one another.  This, what we have now, is better than anything I imagined.

And the question "what would I tell a family standing where we were four years ago, afraid and uncertain and wondering what would come next?" keeps popping up in my mind.  What would I have told myself if I could go back and write a letter to the me of 2013?

I would say that knowing is better than not knowing because once you know you can get her the help that she needs that will give her the tools to communicate and learn and grow.  Once you know you can learn how to communicate with her and it will be the best thing ever.

I would also tell myself that now is not tomorrow and is definitely not a year from now.  I have had so many parents tell me "I have a two year old who has non-verbal autism."

Having a two year old who doesn't speak, with or without autism, doesn't mean you're going to have a child who can't speak in a year, or three years, or five years.  Having a four year old who doesn't have any meaningful language doesn't really mean that either.

And that is probably one of the most important things that having this amazing kid has taught me.

Especially when our kid is little, we only know what our kid is like right now.  We don't know what next week is going to be like or next year.  And we definitely don't know what three years from now holds.  You don't know if you're kid is going to require care for life, or if they'll be a professor at MIT or if they fall somewhere in between.  At least not when they're still tiny.

Even now, as a mom to an amazing seven year old, I have no idea what comes next.  Will she end up testing security systems for the government or some corporation (because let's face it, she has major natural talent in that area)?  Or will we still be watching Bubble Guppies on TV and eating popcorn on Family Movie Night in twenty years?  Either way, what matters the most is that I get to be the mom of this amazing, and often times surprising kid.

My favorite advice though, isn't really my own.  It was passed on to me by a mom who had a teenager on the spectrum.  She said that the best thing that I could do is go out and read the blogs and books and articles that were written by people on the spectrum.  There's a lot of scary stuff out there, she told me.  But the people who really know what it's like for your kid are other people who've been there.

And to this day I am grateful that I didn't get sucked into the vortex of pseudoscience and imagined causes and cures (at least I didn't get sucked too far in).  I'm glad I found voices that asked me to think about how I would feel if my mom talked about me the way some parents talk about their children on the spectrum.

Because a two year old who isn't verbal may someday be able to read the gallons of ink their parents have spilled talking about their neurology as if it's a fate worse than terminal cancer.

So here we are.  Four years out from those first tests when we began to learn more about our little mermaid and truly began to understand her.  Last week I got to sit with her while she did her work for the first time in two years.

There was a section of work called "irregular plural nouns" and I watched as she said "cactus, cacti, goose, geese, and child, children."  Then she glanced over at me and grinned hugely.  She is apparently far more articulate at school than at home and I had no idea how far her language had come, because at home we talk about... mermaids.  All day, every day.   I know that she has a very expansive vocabulary about all things ocean related.

I told the person working with her that I heard more words in the hour I was there than I had in the previous year and she was shocked because Maggie talks so much at school, but Maggie, Maggie was smiling.  As we walked to the car I said "I think you've been holding out on me." and there was more smiling.  And in the following days I've heard far more words and sentences than I had before.  She is so smart.

Where will we be next year?  I have no idea.

But I can't wait to find out.

Friday, September 22, 2017

The Calendar

This spring I ran across a chalkboard calendar at Hobby Lobby.

It was pretty much love at first sight.  

I'm an INTJ and planning is sort of my thing.  I used to have mountains of notebooks.  

Now I have my chalkboard (and a small mountain of notebooks, after all my plans aren't limited to meal planning and old habits die hard).  

When I lugged it home Paul laughed and predicted that May 2017 would still be scrawled across the top two years from now.  

I was immediately determined to prove him wrong.

And so far I have.

It helps me to have a calendar of this size right there taking up large part of one wall in the kitchen.  

When I make my shopping list each week I look at it and base the list on what I see.  And if I don't have time to complete the meal I have planned for the night I can glance over the rest of the week and know that we have groceries for everything else scheduled that week and make a quick switch.

Now the calendar isn't binding (the number two question I've been asked after "where did you find it?").  

When leftovers start adding up, I make changes, blot out entire nights and use food before it spoils, or grab something because I already have it  made that will be quicker and easier.  

But on those days when I'm exhausted and have absolutely no ideas bouncing around in my head, the calendar is a lifesaver.  

And I enjoy taking one evening a month to decorate it while I brainstorm meal ideas and search for "chalkboard art" on Pinterest.  

Last month, during another trip to Hobby Lobby I came across a second chalkboard and realized that apparently chalkboard calendar's are a major weakness of mine.  Luckily I had a coupon.  

Now it's become our weekly event planner, which was especially important the first couple weeks of school when we were easing into a new schedule.

Now I'm a little impatient for the changing of the month into October when I have even more fall chalkboard decorating ideas in mind!

7QT: 11 Year Anniversary Edition


You may have noticed that the blog recently underwent a makeover.  

I was bored one night after everyone was tucked in bed and I started out simply updating the photos on the old banner, then I decided it looked too busy and suddenly I was scrapping the entire look of the page and starting over.  

I started off making a banner that looks like this:

But then I decided that the neat, calm children just weren't a realistic reflection of my life.

So I started over.  The new banner is a bit more real.  And I like it that way:


School picture day arrived and I love the pictures that arrived a couple of weeks later:

In hopes of avoiding a repeat of last year, in which Patrick glowered at me, I didn't go to help with the preschool class.  And that worked out well for us:

Here's last years photo.  Which really could have been worse.  I'm sure that this was the least glaring of the many photos the photographer captured in an attempt to get a photo where he wasn't staring daggers at me:


Maggie was given an iPad for her birthday.  She gets to play for it a half hour before school, when we're between dropping off Patch and Sadie and walking out to meet her teacher.  

Watching her play on it is so much fun.  She loves the Toca Boca apps.  And watching her play is sometimes an amazing glimpse into her mind.  

My mom and Sadie and I had all played with the app a bit and had a really hard time figuring out how to do anything.  Maggie is an expert.  I watched her select a person in the hospital version of the game, grab a robe, slap it on the character, put them in the shower, take them out, and bandage their head.  

Other days she brings everyone out to the beach.  

And on my favorite days she styles everyones hair and dyes it pink.


7 years ago she took her first ballet class and while we weren't quite ready for the cut throat world of 3 year old ballet classes in Florida and didn't end up going the whole year, she has been in ballet every year since.  

And she still loves it:


James, who just this week has demanded to be called "Gekko" and "Linny" is currently only answering to "Baby Jaguar."  And now a photo dump of the cuteness: 


One of the things that I really appreciate about Maggie's school are the communication papers that  go back and forth telling me about her day.  Every day I send a form in about the previous night and that morning and every afternoon I get a form back from the teacher with notes about her day.  

But my favorite part are the pages that she fills out herself.  

And how she always tries to write that she went swimming:

This was one of her earlier pages the first week of the school.  She definitely lets me know how she feels:


Twelve years ago today Paul and I went on our first date.  Eleven years ago today we were married!  

Time flies!

For more Quick Takes head on over to This Ain't the Lyceum!  

Thursday, September 21, 2017

Tessie Alert: An Update of Sorts

Every time I think about writing a Tessie update, Maggie's sweet voice singing "Tessie alert!" from just behind me in the backseat of the car goes through my mind.

It's from the driving app that I use, and it asked me at some point if I wanted to add a baby reminder when I arrived at each location.  At the time I thought "why not?" and when it asked what I wanted it to say I quickly typed in "Tessie alert!"  

So now, when the app and alerts are turned on and I arrive at wherever I'm going, it says "Tessie alert!" which Maggie decided to turn into a script.  

She says it now and then when we've stopped the car, but also while we're eating dinner, or when she's walking by Tessie in the living room.  

It probably doesn't quite fit the rest of the post, but it seemed as good a place as any to start before launching into the knowns and unknowns of which there are more of the later than the former.

I needed to ease into this post.

Tessie is growing and learning.  A week from tomorrow she'll be fifteen months old.  She is a great walker, and actually ran across the room today to dart onto the front porch when her therapist was leaving so that she could play in the sandbox.  

99% of the time she looks and seems and as far as I can tell is perfectly healthy.  

There's just the tiny sliver of a percentage of the time when what's going on with her still scares me.  

Her central apneas are almost completely gone.  This summer I thought that they were finally gone.  

We were past it.  

It had been almost two months since the alarm had gone off for anything other than a detached cord.  

Then one night in July, the alarm started to go off.  I was getting the boys to bed.  I got up and walked into the room, but I wasn't hurrying.  I fully expected her to be standing there, at the edge of the playpen, looking at me, having pulled a wire off of her chest strap.  This happened several times a week and it hadn't been a real episode in so long.  

She'd become such an expert at removing her oxygen sensor I'd stopped putting it on.  What was the point when she'd have it off in five second flat?  So the respirations per minute and heart rate monitors were all that was left.  

Tessie during a study in Boston.  This cap is pretty much one of the best things ever
and I really hope it's approved for clinical use because it would make EEGs for kids like Maggie
so much easier.
But she was asleep.  Well, I thought, she still sometimes pulls wires out when she's asleep.  I glanced at the monitor.  It wasn't reading as unplugged.  I looked at her and realized that this was real, she wasn't breathing, and hadn't been breathing for twenty second when the alarm first started sounding.  

I rubbed her back hard and she took a breath.  Two breaths while I ran by hand back and forth across her back.  I stopped and stood and stared at the numbers on the monitor.  The respirations per minute went up for a moment then started to plummet again.  

I looked back at her and her back was perfectly still.  As the monitor read zero I turned her over and rubbed her chest and she took a big breath and then another and another. She had started to breath on her own.

The alarm went off a few more times in the following hour, but I stayed close by, and directed a fan towards her and finally whatever episode had begun ended and for another month everything was fine until, just as I started to relax and think maybe she'd outgrown it, it happened again.  

Now once, not that long ago, this would have sent us running to the ER.  But when you have a baby that was stopping breathing 45 plus times a night, with the alarm going off all night long, it was a big deal that she needed so much stimulation to start breathing again, but not so out of the ordinary that I thought we should go in.  

This was not all that long after being sent home after Maggie's seizures, and I'd been asked plenty of times by doctors if she ever didn't start breathing again on her own, and I'd said yes, and they'd nod and make a note, and that was that.  No one acted like it was that abnormal considering her diagnosis.

At Tessie's last doctor's appointment though, I mentioned what had happened and she paused and asked if I had called the pulmonologist.  I explained that I hadn't, because she hadn't seemed to think it was a big deal when I'd mentioned it before, but her primary care doctor did think it was sort of a big deal, and she had me call and the new plan of action was to go straight to the ER if it ever happened again.  Thankfully it hasn't.  

It's been a month.  

But lest I relax too much we had the scare of two and a half weeks ago.  

We'd had a long day.  It was the first week of school for Maggie, and her first full day.  We'd been picking up and dropping off the big kids, playing at parks, and running Maggie to therapy and Sadie and Patch to gymnastics and by the time all of that was through Tessie was exhausted.

She fell asleep in the back of the car.  

When we got home I was about to unload Tessie when I saw that she was asleep.  So instead I grabbed a bag and started pushing the pieces of school uniforms that had been discarded in the car between school and gymnastics into it so I could take them in and wash them.  When I straightened up and reached for Tessie I froze.  

Her head was moving back and forth rapidly, almost like a very fast, very intense tremor, and her eyes were moving back and forth in her head.  Before I could get her out of her car seat it was over.  By the time I got her to the house she was babbling.  

I called the neurologist in the morning and the doctor who sent us home from the hospital last time called back.  After listening to my description she said that it sounded very much like a type of seizure that occurs upon waking and that I needed to get it on video.  Which has led to some very cute videos of Tessie waking up, as I pull out my phone before I try to wake her, but thankfully no more seizures.  

If I never have a chance to get that on video I will be perfectly happy if it means it never, ever happens again.

Unfortunately the last little scare was just last week.  It seemed small enough.  But it almost landed her back in the hospital.  

Tessie had to work really, really hard to figure out how to drink out of a cup.  And we bought just about every kind of cup on the market before we found one, a sippie cup, that she finally figured out how to drink out of.  

Okay I actually do need to back up.  Earlier this year, shortly after Tessie's birthday, she narrowly avoided having to go back to the hospital because she couldn't figure out how to drink out of a cup and nursing was no longer enough to keep her hydrated.  

But she finally figured it out and within an hour of a doctor who knew her from past appointments telling me to bring her in, after I mentioned her unusual heart rate to him during Maggie's EEG (and that while her pediatrician wasn't worried it just seemed odd because it was staying well over 150 beats per minute while she was asleep, and had been for a week) and he pretty quickly asked about fluids and said we need to bring her in ASAP (she'd had less wet diapers but was still having 2-3 a day).  

Thankfully since I was out of the house for half a day at the EEG she was super motivated to figure out the cup and finally did and drank so much that her pediatrician said to watch her but that she should be fine without going in.  And by the next day her heart rate was back to normal.  

And that was great until last week when she promptly forgot how to drink out of the cup and would desperately try to drink only to have the water spill out of her open mouth.  

By the second day of this I was freaking out.  

 I left messages with both her neurologist and pediatrician and made an appointment with her pediatrician for the next morning.  

She finally began to refigure out the cup that night and got a few sips. The next morning she got a little more water down and finally had a wet diaper, while we were in the doctor's office, which the doctor told me kept her from being admitted then and there.  

And she's back to guzzling water like a champ.  

And that's more of less where we are now.  

I keep thinking we're past whatever is going on and then something happens and I'm panicking wondering whether this is just a normal toddler thing or if it's something that should send us to the ER, because if the last year has taught me anything it's that it can be really hard to tell the difference.  

Is she being normal toddler clumsy or having seizure?  How can these two things be so hard to tell apart?

I have a letter in my car that would admit Tessie, without stopping to register, to the PICU at our local hospital if she starts to become incredibly clumsy again, but do I use it if she's having an actual seizure, because I've been told not to bother coming to the hospital if a seizure is less than five minutes long, just to call the neurologist.  

Honestly it can be so confusing sometimes and the line between "am I being paranoid because so much has happened" and actual panic because this can be really frightening is so fine.

But I'm clinging to the fact that she is totally and completely healthy the vast majority of the time.  And cute.  Let's not forget cute.  Although I may be more than a little biased.

The boys think she's pretty cute too though.

Monday, September 18, 2017

First Days of School

I couldn't let the beginning of the school year go by without a somewhat belated back to school post.  

Sadie and Patrick kicked off the beginning of their school year at the end of August. 

Patrick is now in the four year old preschool class and Sadie is now a third grader.  

The first day went smoothly for everyone except James.

For a bit of perspective, when Patrick went to his ballet class last week (which we could watch through window and which lasted less than an hour) James walked around sobbing "I just love Patrick so much.  I just love him so much." because they're pretty much inseparable.

So James struggled a bit when he realized that we were leaving and that he wouldn't be staying with "his friends" in the preschool class.

He was very, very excited at pick up though, and by the end of the first week he was shouting goodbye to Patrick and Sadie at drop off.

He has a much, much easier time saying good bye to me when he goes to what our kids call "baby school" at the gym while I run (and walk) on the treadmill for an hour.  But then again, I'm not Patrick:

The second first day of school of the year was much harder.

I was so nervous that I was shaking.

She wasn't nervous at all.

But she went and after a few days of being exhausted she'd gotten used to her new schedule and now excitedly begs to go in to school long before class starts.

She has her own locker:

And her very own desk.

At the end of the day I get notes that look like this (along with a page filled with information from her teacher) so I know what she's up to:

And with the help of an amazing teams she's gotten off to a great start.

How much room do they need?

"Momma, sometimes at night magic picks me up and carries me out of my room and into your room and puts me into your bed!"

Really?  That's why when I got out of the shower the other morning I found this scene stretched out across my side of the bed?

And why are they incapable of sleeping vertically with their heads on the pillow?  Is there something on the Y chromosome that requires they stretch out and take up as much of the bed as physically possible?

Because that's kind of how it feels to me.