Tuesday, July 31, 2018

Finally Better

I spent hours Saturday and Sunday typing a post.

It is enormous. And an actual blog post. With thoughts and not just updates.

But it isn't done yet despite like seven hours of work and rereading and reworking and agonizing over for four days. It is coming though (and now that I've written about it here it has to be, right? Although probably somewhat anticlimactically, like, that's it? That's what you worked so hard on? Anyways...).

I have good news. My back doctor, just before completing her residency and moving on to bigger and better things, referred me to another doctor who she thought might be able to figure out what the heck was going on with me and why I'd been sick for the last eight months.

And she was right. After five days of taking the pills that he told me to order online the pain I've been in for eight months is almost gone.

I was so skeptical when I went to see him.

So, so skeptical you guys.

I'll put the spoilers down below for anyone who wants a basic outline and not the whole story in the video.

Basically after going over my health history (all the tests I'd had done just showed inflammation) with this particular osteopath he noticed I'd been on antibiotics for five months for my kidneys when I was pregnant with Tess.

He asked if I'd taken probiotics and I said I had and he asked what kind and I said just the kind from the super market (super market brand basically). And he nodded and noted that each time I had taken antibiotics when the kids and I had strep I'd felt better for a week and then got sick again.

And he said he thought that those five months two years ago had wiped out everything good and that that was why I was sick now and that I needed to be on some super super strong probiotics.

After five days on them the pain is almost gone completely. It is amazing. Because I had tried probiotics before I didn't think it would really make that big of a difference. 

It totally has. My stomach isn't totally back to normal but it also doesn't feel like I'm being punched in the back constantly and I can actually eat food without feeling like I'm dying.

So... that's amazing. 

I am so relieved. 

Thank you to everyone who prayed for us. I needed this. I need to be 100% to keep up with Maggie especially... and now I'm closer to being there.

Thursday, July 26, 2018

Peace of Mind

So I know this looks like a review and unboxing video.

But it's so much more.

Because in it I go into how we got from those first days when we saw Tessie not breathing to yesterday when this little box arrived in the mail and I sat down and opened it. And how we went from there to actually feeling peaceful with what might happen if she does someday lose her monitor.

And you guys I know you don't all have the time to watch this so here's a spoiler (skip the next paragraph if you don't want to know how it turns out).

I put on the Owlet with Tessie's medical monitor and the numbers were identical. They went up and down together at the same time. 

And I know that's how it should work but to me that feels like a tiny miracle.

I woke up and checked her numbers and felt so much more at peace than I had in a very long time.

Now if she loses her monitor (which she shouldn't, but still... there have been a lot of shouldn'ts and I just can't trust that she won't) we have this. 

Wednesday, July 25, 2018

Day with the Dinosaurs

I think this might be the boys all time favorite exhibit at Impression 5 Science Museum.

They have never been that "into" dinosaurs... but they loved the Amazing Dinosaur exhibit so much that I think we could have spent the entire day there. 

They definitely weren't ready when it was time to leave.

James wanted to be buddies with the model of the triceroptops. 

But I think dressing up was there favorite. Or at least it was up there with the T-Rex that roared.

Anyways this is our super fun time with the dinosaurs. We will definitely be back!

Tuesday, July 24, 2018

The Best Day of Patrick's Life: MSU's Great Dairy Adventure

One a much lighter note than anything else I've written lately, last week Patrick and James were watching PBS Kids at Nani and Bopa's house and they saw an advertisement for MSU's Great Dairy Adventure. 

The Dairy Adventure is basically a huge dairy event (meaning lots of cows and activities for kids) on campus at MSU, and Patch, especially became immediately obsessed. 

He wanted to go. He wanted to milk a cow.

It was pretty much all that he could talk about. And if you only know one thing about Patrick know this: he talks a lot. In fact it would not be inaccurate to say that during his waking hours, he talks non-stop.

So we went. And we stood in an enormous line. And it was totally worth it for this moment when Patrick got to milk a cow.

But there was way more to the day than just milking a cow and I threw some of the highlights together in a fun little video of our day.

And of course, milking the cow is there too.

I can't wait to show Patrick when he wakes up!

Monday, July 23, 2018

When You See a "Difficult" Child, Before You Judge

We had a rough weekend.

But it wasn't because of the girls.

They were great.

It was other people. Mostly other people with opinions about what Maggie needed.

And that inspired this video.

I really try, in general to avoid being ranty, because I really, really hate my old ranty posts and find them incredibly embarrassing. But... I also think there's a time to speak out.

And that feels like now.

Sunday, July 22, 2018

Sunday Updates: Week 10

I have a serious case of writer's block right now, mostly because I have nothing new to tell you.

Nothing new has happened.

I'm still waiting for news about those blood tests from the other kids.

I'm wishing I'd asked if they were testing the other kids to find out if they had the mutations that Tessie and I have for osteocondromas and I'm wishing I'd never googled that word then clicked over to images (don't do it). 

I'm guessing that he would have (is that why there were three vials of blood for each kid?) but I completely forgot to ask. 

Or maybe not. I really don't know. Maybe they are just looking at the one most important thing first before we think about anything else.

I also wish I'd asked "about how long." But of course I didn't. 

If you can't tell I basically have a one track mind right now.  It's almost impossible not to. 

So much has happened and yet it feels like everything is happening too slowly. 

I mean I know it's all going as a fast as it can. But still. Slowly. 

Anyways I will update when I know more, or at least know something (or when my brain finally works to write about something else!).

Friday, July 20, 2018

Travels and Updates

The last two weeks I planned on posting regularly over here, but between the news of Tessie's one in a billion genes (or whatever the odds are) and traveling cross country to visit Paul's family on the east coast and for Tessie to participate in the second year of the autism study at Boston Children's I was completely and utterly emotionally and physically exhausted at the end of each day.

I managed to make videos along the way through willpower and because when Paul and I are making videos we laugh a lot.  And because when we were on vacation, surprisingly, Paul kept asking if I was going to film.

And in the interest of safety I actually managed to film videos the week before at home that I posted while we were gone, and this week while we were home I posted the videos from our vacation (so that I wasn't posting videos of us being out of our house while we were out of our house if that makes sense).

Usually there's only a one day delay, but not this week.

We're sort of in a holding pattern here now, waiting for more news and more test results to come back. I think waiting has never been so hard.

But traveling and seeing Paul's wonderful family and the kids getting to play with their cousins was most definitely a wonderful way to spend last week after getting those results.

Sadie, Maggie, Patrick, and James were tested on Tuesday for the genetic mutation that Tessie has.

The geneticist said that it shouldn't take long for us to know if they have it, because we know what the gene is now, and they are specifically targeting that gene.

Getting the blood drawn for the four of them at the same time was... more than a challenge. I strongly wonder now how much Maggie can read because she didn't know where we were going and we had to go to a specific lab in a town she'd never been to before in a plain grey building. She walked up to the building and stopped and looked up and looked at the word "healthcare" on the side of the building and promptly burst into tears.

Which was really sad and also sort of amazing because it really seemed like she had just read a really sort of big word.

But it is done now and I hope we don't have to repeat it for a long time.

And now on to this weeks videos for anyone who has not seen them who wants to.

This is basically the highlights of our vacation in a not so tiny nutshell.

In the first video there were a few wrong turns that made our car ride a little bit longer that I may never live down. And secondly, if you saw a license plate that said TB12 Fan, would you know what TB stood for? Because I honestly also may never my answer to that question live that down with Paul!


This one went... well... probably nearly as expected with our history of family photos...

This one was a combination of our first two day in Plymouth, and actually came before the photo day.

Of course it did.

Because James fell down at the park and ended up with a scrape across his forehead just in time for pictures... and I know they can photoshop it out... it's just... it always happens around here!

Paul and I stole away for our second date in a calendar year, which is always exciting.

And one of the reasons that inspired all that driving for the second time in six months!

Tessie's participation in the study! She was such a rockstar baby and did such a good job.

And you guys. Paul made me laugh so hard both making fun of my selfie stick again towards the end of this video and trying to help out with the "outro" end of the video. When I showed him the edited version I'm pretty sure I've never seen him laugh so much... maybe ever. So there is that.

If this hadn't been a video about Tessie I would have bumped that clip up to the beginning... but since it was about Tessie... yeah.

Anyways now we have to go get Tessie so I have to run, but that is the latest around here.

I hope you're all having a fantastic summer and I'm not planning on disappearing again any time soon.

Please say a prayer we get some good news soon. Thanks you guys.

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.


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.