Tuesday, July 10, 2018

The Genetic Test Results are In

Yesterday was extremely hectic. I got the call from my doctor that the 14 genetic tests that they ran on me, including the cancer screening tests, had come back completely normal.

And I was really happy.

And then I got the call from Tessie's geneticist not an hour later that, after four months of waiting, her test results were back early (it can take up to six months for the tests she was having done to come back).

It quickly became clear that this conversation was going to be different than any of the other conversations that I'd ever had with any of Tessie and Maggie's other geneticists and that this time they had found something. Several somethings.

He told me about the two biggest somethings on the phone call.


And then I hung up and called Paul and resolved the debate that we have joked about for the past two years of who has the odd gene causing all this chaos.

Both of us. We both have the same autosomal recessive gene, on a gene called MYO1H that effects myosin production, which happens to effect... ventilation, among other things. My mutation exists in .04% of the population and his exists in .2% of the population and I guess the chance that we would meet and get married and have kids that stop breathing in there sleep is nearly outside the realm of the possible.

And yet here we are. But really there's a lot more to it than that.

I still had about fifty things to do and so I got through the rest of the day and then sat down and turned on my camera and started talking.

I didn't put on even lip gloss, or even really think about what I was going to say beforehand (I figured it would come).

So this explains everything that I know at this point in time.

Monday, July 9, 2018

Caroline's Cart and a Mini Monday Morning Rant

I still have a belated Sunday blog post in the works (we're packing for a big trip and I did five loads of laundry last night and collapsed unable to basically even type last night, but there will be a blog post as soon as things settle down, I promise) but I made this on Friday to auto post this morning and it is possibly my favorite video ever.

Pretty much because I feel like it has an important message tucked into a mini rant in it.

I've seen people use these cart to carry there purses and because they're easier to push than the kid carts with kids literally jumping off them to play tag and run in circles around the cart.

I know that there are invisible disabilities.

But if you have a group of kids who aren't using the harness running in circles around the cart while mom is five feet away talking on the phone... I'm taking a deep breath as I type this... possibly leave the cart for someone who desperately needs it to survive shopping (and yes I literally have seen both the purse scenario for a college girl and the tag scenario as reasons why I have not gotten to use the cart).  That harness is important. People need it and the seat.

And now I'll jump off my soap box to share this video with you:

Friday, July 6, 2018

In Which I Am Ridiculously Proud of Myself

You guys I did a thing.

A couple of months ago our garbage disposal stopped working.


And nothing that we did would make it work again.  

The solution at first was to put one of those little net sink stoppers in and go without a garbage disposal. But one morning after apparently enough got through without anyone noticing to back up the dishwasher I decided to take matters into my own hands.

I watched three Youtube videos on garbage disposal repair and I took the boys to Home Depot and picked up a new one. 

And then I set to work. 



I set up my camera to catch it just in case anything went horribly wrong. And I definitely had more than one point where I was pretty certain I was not going to be able to figure out how to finish fixing it.

But when I went to the kids dance performance that night I was able to announce to Paul that not only had I gone to Home Depot and bought a new garbage disposal, I'd also installed it myself! 

I'm not sure I've ever been more proud of a DIY project at home:


Thursday, July 5, 2018

Maggie's Day

The last of our girls' summer birthday's is our yearly Mermaid 4th of July birthday. 

Maggie had made it clear that she wanted to go to the water park to go swimming and it was amazing. And I borrowed Sadie's water proof camera and was able to capture some of the under water fun. 

Tessie, for her part, is determined to follow in her big sister's mermaid footsteps. 

Her pool strategy was to walk straight out into the water while I hovered around her, trying to hold her hand (nope) until she got up to her neck in the water and then she would start to blow bubbles.

And topple over, because of course she did.

So I would haul her back to waist level and she would scream in protest and head straight back out, trying to go deeper and deeper and protesting if anyone interfered with her progress.

It was like having a tiny Maggie all over again. 

However it was a lot of fun. Just a little extra exhausting keeping Tessie from trying to drown herself every .2 seconds.

When we went out to do fireworks I completely surrendered to the idea that Tessie was going to throw herself straight into the pool with her clothes on (Maggie was delighted and kept saying "baby bath!"), but was mostly just relieved that it kept her out of the way of trying to seek out the fireworks down below.

Tessie isn't bothered by loud noises and if she weren't in the water I'm pretty sure she would have been trying to investigate what was going on.





The only road bump in the day was that none of us expected a certain mermaid to try to touch her candles.  After having candles for four years and not touching them... well... this year's move to touch the flame was unexpected.  Thankfully Sadie, who was sitting right next to her sister, is quick.

Now for the day of water slides, presents, burrito bowls, and fire works.

Tuesday, July 3, 2018

This, That, and an Almost Birthday

It's been a busy couple of days and while I only missed posting I apparently have some catching up to do here.

First off, tomorrow is Maggie's birthday, which meant today we did our little "say goodbye to 7" celebration (a Sadie made tradition).

It was also the first day of the summer horse term.

Maggie was very happy to see the horse that she rides, Jack.


The first thirty seconds of this video may be some of my all time favorite moments in any video because in it I tell Maggie that we're going to do what she asked for her birthday (she had told me she wanted to go to water slides and I wasn't sure if they were open) and I was able to catch her reaction on camera. While subtle the expression on her face in unmistakably joyful:



It took me a long time to put this into words, but after six months of thinking about what I was going to say and how to express the thoughts bouncing around in my head I finally made this on minute and forty second video.

And then I watched it eighty times while editing it trying to make it perfect. It isn't perfect but I am happy with it.



And lastly here is a video from a very hot, very imperfect Sunday.

Don't worry, that isn't what I wore to Mass (I was sweltering in a sweater that you never see because I took it off the moment I lugged the three rule breakers out to the car).

It was a tough day. On the upside Paul decided to take some time off lawyering to moonlight as a comedian.

Sunday, July 1, 2018

Sunday Updates: Week 9

Today Tessie went into the kitchen at Nani and Bopa's house and popped open the dishwasher.

This was impressive because the dishwasher is not particularly easy to open, even for a grown up. It was installed at an awkward (to me) angle, and is not quite flat, although it looks like it is, so that when you open it, the bottom wrack immediately pops out. I think this is intentional and is supposed to be convenient, but it makes me a little bit nervous every time I put a plate away.

Tessie, however, appears to have decided to use this feature to her full advantage.

She opened the dishwasher and returned with two wooden spoons and then sprinted across the room towards the front blinds and yelled a new phrase.


If she's going to add a new word to the lexicon, she's going to make it memorable.


As she attacked the blinds (and as Paul and I realized what she was doing an moved in slow motion from across the room to stop her) she said the word in a clear, loud little voice.

"Don't!"


Which made us laugh later when we talked about it and which I stored away in my mind to share with her therapists.

She may not have many words, many may be bits of echolalia, but she certainly can use those bits appropriately.


So now we can add "don't" to "get down," "go," "yeah," and "ma" in the list of Tessie words.

When Maggie was her age her favorite words were "boots on" and "come on."


"Come on" was basically her catch all phrase that she used for everything for a great many years.

Any time she wanted me to do anything she could indicate it not verbally and then say "come on, come on, come on" to hurry me along and let me know that I wasn't doing whatever she wanted me to do fast enough.


As I've been writing this blog post, Sadie has been sitting next to me doing math problems on the Khan Academy app on her iPad. Khan Academy is the main math program she'll be using this summer.


And after math she moved on the science (mainly because the math section of the app temporarily stopped working and told her to try back later after she'd been doing it for a long while).


Now it's time to sleep. Here's hoping that in the morning the heat wave of the last few days really will have loosened it's grip on the weather... a least a little bit.


Saturday, June 30, 2018

Tessie is Two

Can you believe that Tessie is two?

I feel like so much has happened in the past two years so in some ways they have flown by, but that I also find myself surprised now and then that the baby of the family looks less and less like a tiny baby every day.

And of course I have to start this post by looking back.









The past two years have no been easy. 

Tessie has given me more scares than all the other kids put together by stopping breathing a few thousand times in her twenty four months of life. 

But she's here and she's amazing and we are so fortunate to have her.

At two she has just surprised us all by learning to say "get down."

Her occupational therapist asked if this is, perhaps, something that she here's frequently (making it echolalia) and while it is, she is using it quite appropriately. She always wants to be "down" on her own two feet so that she can be where the action is.

The day before her birthday when she said "get down" I asked her if she wanted down so she could get into trouble and she replied with a perfectly timed "yes." 

Her other favorite word is "go."

"Get down," "yes," and "go" aren't a huge vocabulary but she uses them pretty effectively to make what she wants known.





And I love being able to share these two videos of these two very special days with you guys.

And I'm pretty excited to have them to look back on too!



Thursday, June 28, 2018

Ready, Set, Swim

Earlier this week I overheard Patrick and Sadie arguing about whether or not Michigan had crocodiles in the rivers.

Patrick insisted that of course we did.

Sadie said that we don't.

And I smiled because I don't think that Sadie remembers that she was the one who started the alligator stories when she was all of four years old and she decided to tell her two year old sister that there were alligators in the rivers here to make them less appealing to a two year old mermaid.

It didn't work. 

Mermaids love water. She was always on the lookout for an opportunity to dart towards it and she would glare at anyone who suggested it was "alligator" or "shark" water.



But apparently someone believed Sadie's stories.

Patrick.



And in some of my favorite therapy news ever, apparently Maggie set up an obstacle/gymnastic course at  therapy, on her own, and then requested that her therapist say "ready, set, swim" and then would go through it while smiling hugely.

That basically made everyone's day yesterday.

I don't think anyone can say she doesn't have a fantastic imagination. 

Wednesday, June 27, 2018

The Day I Handed Paul a Camera

This day, and as a result this video, has so much information in it that I almost don't even know where to begin.

First off, I spill the beans and talk about how the school bus crashed into our parked car the one night that Paul got home before me and parked on the street outside our house, because he knew he would have to leave before me in the morning (but not apparently before the bus picked up Maggie on that particular day, which is rather shocking).

Did I mention I have some school bus angst? First because they let Maggie run all over the bus when that one (different driver decided not to put her in five point harness or stop the bus to rectify the situation), and then because the bus was so very late so many times (we're talking more than 10 minutes and up to 40 minutes... picking up 2-3 children), and then... this.

However I was thrilled when I saw her summer bus driver pull up and it was one of our all time favorite bus drivers who I had prayed that she would have this school year, so maybe just maybe this summer will go smoothly. I'm really hoping.


And I talk about how after seven months of waiting (okay not really waiting because I wasn't really impatient for this appointment at all) I went down to Ann Arbor for a doctor's appointment for a fourteen gene panel of testing that will look at certain genes for both cancer and autism.

That all started because I kept getting ads for the those commercial cancer tests in my Facebook feed, and I asked my doctor if they were worth it, and after going over some family history he said he didn't think commercial testing was ever a good idea but he did think genetic testing for me was worth looking into.

And that is basically how we got to yesterday, where I met with a genetic counselor and then a doctor and then sat down in a lab and they took a tablespoon of blood after answering about a hundred questions about whether or not I would be too anxious to handle life if they did find out that I had some inherited sort of faulty tumor suppressing gene.


But the fun part of the day, and I feel like this is one of the funnest videos I've made (at least part of it is) was when my camera got into Paul's hands and he got pretty silly on camera, while four out of five kids all tried to pile on him at the same time.

And now my time for writing is up because he has to be at three different court houses tomorrow and it's time to turn out the lights so I can be up before the kids tomorrow to hopefully have time to proof read and add a few photos here!



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Tuesday, June 26, 2018

About that Week Off of School

I have a rule around here and that is that I will never ever show a meltdown.

Today I do mention that we had more than a few this past week, and I can't help but sigh because the problems that I worry and stress about are nearly never the ones that actually end up being the actual problem.

In the weeks leading up to the last week of school I spent a lot of time stressing about how Maggie would react to nine days without the bus coming to our house.

On weeks when she had Mondays off, and on Christmas and Easter break we had a really tough time.

I pictured daily meltdowns.

But you guys, she got summer. Totally and completely. She understood. She didn't even ask about the bus.

It was amazing.

It felt miraculous that first day when she understood.

There was one thing, however, that she did not understand.

And it had to do with a certain younger sister getting to get up and get dressed and go to therapy bright and early every morning.



You see, Maggie has therapy in the evenings and that cannot be changed because those spots are in very high demand (I tried and was told once you have that spot if you give it up it's gone and obviously I can't do that for the school year...).

And that became a whole new problem.

We had to drop off Tessie every morning and then leave the therapy center with Maggie still in the car.

And that was one transition that became very hard every single day at drop off and pick up.

It wasn't the bus not coming. It was dropping off and picking up Tessie that got us.


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Monday, June 25, 2018

Sunday Updates: Week 8 and a Little Late

Today school starts again for a certain little mermaid who is going to be extremely excited when the bus arrives at our house and life goes somewhat back to school-year-normal.

And I'm thankful that she's going to have her afternoons off before going to school in the evenings so that she has the schedule that she loves with more of a summer than she usually has.


Yesterday I was sitting outside watching her play in the backyard when she spotted me.

She ran up to where I was sitting on the porch and grabbed my hand and said "Mommy up please!" and led me down to the grass and had me sit on the swing next to he with an occasional "Mommy push please" (although she seemed to be getting higher on the glider without me) and then lay with me on the grass and watched the birds while she told me "Birds say tweet tweet" and she pointed out the fact that we could see the moon and the sun at the same time.


Books and videos and anything involving the planets aren't quite mermaid level here, but they come in a close second.

And then the clouds rolled in rather quickly, because not long before she started saying "cheese" we had blue sky with some light fluffy clouds.

We managed to read a few more Bubble Guppy stories on the Kindle app on my phone before the skies opened up and we ran inside before the first rain drops hit the ground.


Maggie is a huge fan of the Bubble Guppy books on the kindle fire app. She is hard on books but she can't accidentally, or not accidentally (stimming) hurt those books. 

And she can swipe back and forth and they're still totally fine.  Which is great.



Sadie is enjoying being ten, a lot.

And last night she announced that we've really waited too long to start some sort of math summer program, so if I could get on that ASAP, it would really be a good thing. 

Apparently when she got to her new school she was ahead at math and she wants to make sure she stays ahead.

She's a teensy bit competitive. Especially about math.

The night before her birthday we always take a walk and a couple of years ago we snapped this picture:


Last year when we had a beautiful sky the night before her birthday we decided to try to make it a yearly thing and we did it again:


This year the sky absolutely was not cooperating and did not have a hit of any color other than gray and when I snapped the picture you couldn't really see Sadie against the backdrop. So I threw in some of her favorite purples and she loved the photo although it wasn't quite as natural.


 Also, as the development we live in has grown there are now two new houses in the empty field where we took that first photo which was kind of fun to walk by and see on our way to the spot where we took this one.

And now we are only a few days a way from a certain still-one-year old's birthday.


And she is definitely ready for it to be here turn.

Don't worry. She was eating cake a very short while after this photo was snapped and because of sensory issues she is not every very successful with ice cream. But that doesn't mean she doesn't love the idea of ice cream.

And that is my belated Sunday Update!


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