Sunday, September 30, 2012

Birthday Party! Birthday party? Birthday party.

To start off today's post, I want to post a comic from an awesome webcomic called xkcd.  It's not for everyone, but I read it daily and it often stays with me for quite a while.  It's my kind of thing.

About a year ago, he posted this comic, and it's stayed with me since then:

When it first got posted, I sent it to my friend Matt, as he has massive heart issues and I thought he could relate.  When everything struck, I once again appreciated how perfect this is.

Anyway, today was a birthday party, and Shel and I decided that we ought not take Amelie, lest she get sick.  We made this decision yesterday.  We woke up today and found her completely snotted over...which might change the way that the week is going to go.  Ugh.

Back to the story.  Today was the party, and Anya and I went.  It was for Tristan, who was turning 1, and is supposed to be a joyous occasion.  But for about 123123413 reasons that I don't feel like disaggregating on this here blog, it was such a roller coaster.  I'm sure most of you can break apart why seeing just Anya running around at a birthday party, without Amelie, might be sad for me.  Moving along.

At the party, Anya was using the bathroom, and looked at our friends' laundry hamper.  She really enjoyed it.  She said it looked like a 'monkey cage'.  I loved that idea, and asked her if she wanted to get into it.  She did.

She was acting like an angry monkey who wanted to get out when we shot this.  

We had a really good morning, and I shot a quick video of Amelie running.

The video quality was crap due to most of the lights being off in the morning, and no real sunlight yet (they get up early, yo).  But I got the camera app up in time to get this captured.  To see her running this fast and smooth (comparatively to 10 days ago...) is great to see.  
Thought it would encourage many of you.

Off to do more planning for tomorrow's lesson in 7th grade.  I have totally gotten into the vibe of teaching 8th grade US History, but am so struggling with the 7th grade curriculum.  
I'm about to go digging into the boxes in the back of Mr. Lindsey's office.  :)

Night all...

Saturday, September 29, 2012

Normalcy, Normalcy...oh how we adore you.

Not much to write about today, but sharing pics and video.

We celebrated our last weekend of normalcy by being boring. Boring is good.

We received a gift card from a long-lost former roommate of mine (Thanks Tif!) and the girls were treated to yummy donuts.  Amelie obviously enjoyed hers.  Anya ate hers so fast that we wondered if she had dropped it. Anya does not savor.

We were in East Lansing to go to some of our favorite places, but purposely avoided everyone we knew, because we really can't get Amelie sick before the chemo starts.  It's bad enough I'm sick, but I'm doing everything I can to avoid passing it to her.  
The kids loved playing on the structures at Patriarche Park in E.L.

I mentioned the bracelets a few posts ago, and wanted y'all to see what they look like.  Cool eh?

Finally, I mentioned the idea that Anya has been doing a lot of medical play, working out what is going on with Amelie in her own way.

The picture above is one she drew this morning of Amelie. 

I love that the pic on the right shows the surgery scar on the back of her head in a completely horrid way, with the Spinal Tap on the lower back....

...but when you look at the pic on the right, Amelie is totally smiling.

That's pretty much the way things are right now, and the way they ought to be.

Going to go to sleep like a normal person tonight, and not stay up until 1am being a numbskull.  Hope the weekend treats all of you well.

Anya and I are going to a birthday party tomorrow (Go Tristan!), while Shel and Amie have some alone time together. 

Friday, September 28, 2012

Ladies and Gentlemen.... Start Your Engines!

This is the last normal weekend of the next year(ish).

We got a call from the nurse practitioner who works with Dr. Robertson tonight, and she and Shelley talked for over an hour.  Here are Shelley's notes from the conversation:

A short version of the notes:
  • We're most likely going to start chemotherapy on Tuesday.
  • They told us to expect to be admitted for 4 days for the first round of chemo.  They'll deliver the 4 drugs during the first three days, and then keep her on IV for the last day as the last drug is quite dehydrating.
  • For those who are in the biz, the chemo regimen will be: Vincristine, Etoposide, Cytoxan, and Cisplatin.
  • During the chemo, at least for the first few rounds, we'll be giving Amelie daily shots of GCSF, which will help her develop a healthier colony of stem cells to be harvested for the later series of chemo.
  • We need to get used to being in the hospital.  :)

So yeah, that's roughly what we have coming at us...and quick.

Tonight, during that phone call, I played with the girls.  When I (normally) play with the girls, it's usually revolving around the basic idea that I'm an attacking monster who wants to eat some random body part....usually in the lower extremities. 

We've been shepherding Amie around the house all week, and she's been getting more and more steady (as they predicted) as her brain re-wires itself.  Today, she just shot away from me towards the bedroom, and it was so steady I just let her go.  She ran....not walked, or sauntered, or moseyed....  She ran towards the master bedroom and stopped dead and turned around and laughed at me.  No hesitance, no wobbliness.  Just speed and joy and screeching happiness that her Daddy was chasing her across the room going "nom nom nom" looking to eat her toes.

We did this for the next 30 minutes, as she ran across the room over and over, and then down the hallway and into her room.  We dodged around the glider, up into the crib (where they hid under blankets).  They shrieked with joy as we played.  There was no time spent towards worry and hesitation and fear..and that was amazing. 

So this is the last weekend for that type of thing.  We're going to be heading somewhere tomorrow as a family, to celebrate....nothing and everything.

As a final picture, Shel and I sat outside tonight:

(Pardon for those young readers and overly restrictive people, but sometimes it must be done)

We sat outside, enjoyed each other, and prepared to wage war.

To be overly grandiose, I feel as though we're at the gates of Thermopylae, or maybe riding the seething waves towards a very unfriendly greeting at Omaha Beach.  

In the week ahead, we're going to do our best not to soil ourselves as we head towards the gunfire.

Thursday, September 27, 2012

Piles of news for today...

Sat down and watched an hour of utterly mindless television tonight.

With my wife.

We talked about nothing of consequence.

That was amazing.  

So we had two more appointments today, and heard back from the doc's about the Spinal Tap.  All of the information to follow is completely anecdotal and subject to any sorts of grandiose embellishment, due to the fact that I was busy educating the youth of tomorrow whilest Shelley was slaving away doting upon dearest Amelie.

First up we had an audiologist's appointment to test any possible hearing loss with Amie, as well as to create a baseline in case there's any hearing loss during the chemo treatments.  All that's well and good, but Shelley had tested Amie's hearing the day before.   She did this by kneeling behind her while she was in her high chair and whispering quieter and quieter while giving her basic instructions like "Pick up your foot" and "Rub your tummy" and "Touch your head".  Not sure why we even went to the appointment, because she can hear better than any of your dogs can.  Nonetheless.

We then had an appointment with Dr. Maher, the neurosurgeon who took out the tumor.  They were very happy with her recovery thus far, and other than a little fluid build up in the back of her head (you really don't want to hear about that do you?) she's looking good.  

Shelley asked about the size of the tumor, just for the gratification of those of you who like weights and measures, and about the rate of growth.  He said it was roughly the size of a golf ball when he went in. He said that it would have been undetectable in size only 6 months ago, and was growing aggressively fast.  Hmmm...  

We also heard back about the Spinal Tap.  The test came back clear of any sign that the cancer has spread, which is awesomely good news.  

In case you haven't noticed, I'm having a hard time not making Spinal Tap references every time I write that.  It's much like Monty Python... you either think it's brilliant, or you are utterly confused why anyone would find it funny in the least.  I think you can all imagine where I fall on this one.

So now, a final anecdote that I have to share, and hope that I don't offend anyone for the myriad reasons this might offend someone.

We got a note recently from a good friend who said that a Mass was being said at a Catholic elementary school where the person works.  She noted that 130 kids would be praying for Amelie.  I showed Shelley the card, and it dislodged a memory from her time in elementary Catholic school.  (I did 12 years, she did 8).

A Nun at her school (St. Mike's in Southfield) had told her as a child that it was important that the children pray, because God listens to the children's prayers first.

So of course my off-kilter mind comes up with this image where there's this long, long line of people waiting to deliver prayers to God.  God's up on this dais, spotlight shining down, long white gown flowing...white beard...  He's sitting on a throne, and there's all these stanchions (those velvety rope things that used to be in old banks) that are guiding the line back and forth all over the place as people wait to deliver the prayers.

All of a sudden this pack of 130 Kindergarteners pours into this scene.  Anya's a Kindergartener, so I am acutely aware of their energy and their.....disregard for rules?  Anyway.  They flow through the doors and just start tearing through the lines, all pushing and smashing into the patiently waiting people.  They're all yelling "God...hey God...I just need to tell you something...God...GOD...Listen, GOD!" and they're all yelling on top of each other in this completely solemn place. (white marble columns are present of course)

So God is forced to stop what he's doing to attend to the needs of the Kindergarteners which are now swarming all over the dais, climbing up the throne, peeking under the gown, playing with his beard, hugging his legs, poking his belly...just swarming all over like some scene from March of the Penguins.

God of course is patient, because they're just doing what Kindergarteners are supposed to...and after all he made them like that, right?  So he's patient and kind and listens to them and then shoos them all back out the door with promises of candy if they go back to what they are supposed to be doing, whatever that is.

So yeah.  Hopefully you found that as amusing as I do, and weren't offended by the slightly less than sacred tone.

Night all.

Wednesday, September 26, 2012

What a Day, What a Day.

So today was supposed to be a quick and easy day.

Did you ever wish, at the end of the day of this sort, that someone wouldn't have told you that it was going to be an easy day?

Today was not easy.

Everything was great until Amelie came out of the anesthesia.  I'm not sure if it was a different type of anesthesia, but everything was different.

In all previous times she's been put under, (doesn't it sound like we're seasoned veterans after 2 weeks?) when we've been called back to recovery she's been crying bloody murder.  As soon as we show up, she calms down.  We get her in a good space, and she's back to being ship-shape in 10 minutes or so.  She's smiling at people, saying hi, and asking when she can eat.

Today?  We go back and she was stoned.  Looking off towards the wall, not focusing on much.  We both were trying to interact, but she wasn't herself.  She asked for food, a good sign, and we gave her some juice and then a popsicle.  They moved us out of the critical area of recovery and into a more private area.

Once we got down there, she lost it.  Lost everything she had.  She screamed for 60 minutes straight.   Nothing consoled her.  We tried everything in the book...but nothing stopped her from arching her back, pushing us, trying to climb off Shel (she was trying to rock her) and throwing anything she could get her hands on. It was like someone had swapped out our happy little girl with a robot version of herself, hell bent on punishing everyone around her for what was going on.

They eventually gave her morphine, and she fell asleep.  2 hours straight laying on Shel's front.

She woke up, and BOOM...Amelie was back.  She asked for a cracker. She smiled, she cuddled.  Then we left.

This was her when she "came back".  Can you see how sweatsoaked her hair is?  Sheesh.

But that hour completely drained us.

My sister said, when I was talking to her afterwards on the drive home, that her son Charlie had a similar experience...I'm going to need to talk to Anesthesiology if she goes under again.

I think it was Shelley who introduced me to the idea of the bucket, as far as energy and spirit goes.  Imagine that we all have a bucket, and it's being emptied and refilled at various speeds.  When we do things that we enjoy, we're filling our bucket.  When we're doing things that are a struggle for us, the bucket is emptied.

This experience today really drained our buckets...and it's my job to get Shelley's refilled, and quick.  This whole experience falls so much heavier on her than I, for so many reasons.

Back to the bucket filling stuff.  Several things happened today, after all of this, that I wanted to chat about for a second, or 300.

1.  Indian Food:  I know many of you are not adventurous eaters like we are.  Some of you have been yanked into our eating excursions and regretted it.  Shelley loves Indian food....above all else.  She loves loves loves it.  She got a double burst of it today.  We had heard reviews of a new Indian restaurant in north Ann Arbor called CurryUp, and went there after the hospital.  It was really good, and we totally enjoyed.  We got home, and had a FB message from our friend Iman who just returned from several months in India, offering to make us meals.  Shelley's bucket is totally getting refilled.

2.  Music: I've been sitting up after I put the girls in bed and playing new music like mad lately.  I'm currently listening to the new album by Mumford and Sons.  They were on SNL over the weekend.  The passion and energy that these guys channel is just....bucket filling, to overuse the analogy.

3.  The bracelets:  A former student of mine asked for permission to sell bracelets as a fundraiser to pay for all the future costs of this whole thing, which we haven't even researched/considered.  (I'm totally not saying this to solicit anything)  I was in the middle of the maelstrom of this whole thing, and I said "yeah, sure"...not really knowing what would happen to the whole thing.  The response to it has been beyond anything Shel and I could have ever imagined.  Really and truly.  We don't even know what to say.  All of it being organized by an 18 year old girl in her first semester at the University of Michigan.  If you want to feel some inspiration, some hope for the future...  just look at that.

So there ya go.  I started off depressing the heck out of you, and hopefully ended up filling your bucket a bit.

ps.  For all the uber-geeks out there, doesn't the picture of Amelie above remind you of Tony Stark?  i keep expecting a light blue glow to begin emitting from her bandage.  Where's Pepper Potts when we need her?

Ripping something from a friend...

Sitting in the surgical waiting room at U-M Mott.   Amelie's surgery started about an hour late, so if things stay on schedule, we should be out of here around 2pm.

A friend of ours is also having some unexpected medical adventures with her family, and posted the following to her blog.  We really liked it, and we wanted to share it for y'all to read as well.  Thanks, Kate.  :)


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

So, we read that and really identified with it.  As we got pregnant with Anya, we booked an amazing trip to Italy.  We did not get to Italy.  We were definitely rerouted to Holland.  Not Amsterdam either.  We enjoyed Holland, after the acculturation process.  It took a while.

Shel and I have been making more and more elaborate analogies about where exactly we are now, and where we've been over all the various adventures we've had in the last 6 years.

I'll make a bad Airplane joke and say that we're in a Turkish Prison.

Shel doesn't want to make morbid humor on the blog, so I'll respect that.

More later, after we get home.

I saw my 12th and 13th former student as we went down to grab lunch.  There's something profoundly cool about being surrounded by people that I helped in one way or another....or profoundly creepy.  I'm going to go with profoundly cool though.  :)

Tuesday, September 25, 2012

Cupcakes? Yes.

I took another night off last night, if only because I was grading for hours and hours and hours to get progress reports done on time.  For those of you out there that are teachers, you know what I'm talking about.  Sometimes, going to work is easier than grading the subwork that you have to generate to make sure the kids don't go haywire.  Whee.

Heads up, I'm a tad bit melancholy tonight...

Yesterday, my sister came up to our place, and took some pictures.  It was awesome, yet bittersweet.  It's always great to have pics taken of all of us... I take plenty of the girls, but there's very few that I'm in...for good reason because I ruin them.  :)

On the way up, she asked if the girls might like some cupcakes.  Here was their response.

They had a great day, and many more of the pics are up on FB if anyone wants to see all of them.

This is the one I like the most, personally.  Amie was just loving her little dandelion.  I managed something close to a smile, if only a smirk.

Amelie's curls have been such a huge surprise to us, and we've pretty much written them off as we approach Chemo. If Amie loses her hair, I'm going to shave my head clean to be with her... granted, I don't have far to go...

Some of Shel's relatives up at the top of the thumb crocheted these hats for the girls.  Shelley, being a prolific knitter herself is already planning out all the hats she'll knit for Amie.  We have one she found that we're not sure if its the best hat ever, or the poorest taste.   We'll see when it's done.

We're headed into surgery tomorrow for two things.  Amie will get her port installed, for the chemo, and they're going to do a spinal tap (You see, it goes up to 11) to see if the cancer has spread yet.  The MRI said no, but they're all about making sure.

We've also got a post-op follow up with Dr. Cormac (Blood Meridian) Maher on Thursday.

We don't have any idea when she's going to formally start Chemo, but know that it's going to be soon.

Amelie has been so..... interesting this week.  She's been perseverating on a small number of things (Play Doh, Eating, Drawing) all at the table.  Way....WAY more than she did pre-surgery.  But at the same time, she's shooting out new words 1-5 a day.  Stuff she'd never said she said 'bike', so there's a weird mix of developmental milestones being met mixed with strange regressions.  What a strange thing that the brain is.

I'm taking the day off tomorrow for the surgeries, as it's Professional Development.  I think I'm developing professionally quite a bit for the time being.  

...and just to restate this.  Everyone who has supported us in all the ways that you are (monetarily, logistically, emotionally, dietarily, and all other ways) amazing.  We can't even process the generosity that has poured in.  Thank you.

Sunday, September 23, 2012

The head stink is gone!

Greetings Everyone!

It's a lazy Sunday morning over here, and we're enjoying the really slow pace.  We're expecting things to pick back up here this week with the expected surgery, a post-op checkup with Dr. Maher, and the scheduling of the medieval torture/chemotherapy treatments that are about to begin.  Lazy sunday morning playing with Play-Doh is more than fine with me.

Amelie got the OK to take baths, so we rushed her into the tub.  The only restriction is that she can't submerge herself for a month. scuba.  I was really looking forward to giving her the bends...

But she no longer has her head stink, and is almost completely clean.  Woo!

In case you wanted to see what it looks like when a totally recovering 2 year old has a blast in the bathtub.

So U-M Children's Hospital has a department that works with kids who are undergoing medical stuff, and their siblings as well.  They gave her a doll (top right) that they attached EKG leads to, as well as bandaged her head.  This idea has blown full up with Anya, who already had a doctors kit (Fisher Price).

They were diagnosing, removing and treating the puppy for brain tumors all morning.  The red plastic thing on the right of the table is the "tumor table" where they scan it for harmfulness.

Shelley plundered the dollar store last night for cheap gauze, bandaids and tape.  It's been a great investment.

Jim and Linda Heraty sent the girls sister cats, and both of them have had quite a few medical emergencies this weekend.  This was the result of a surprise surgery.

Baby had to have emergency surgery as well.

For those of you who are slightly horrified at all this...we know that it is helping Anya come to terms with what's going on, and taking all of the scare out of the event for her.  

Amelie has no real clue, but knows that she loves playing with her big sister.

We get to breathe as the girls are playing with each other, and being totally safe.


Saturday, September 22, 2012

Took a day off..

Sheesh!  Take a day off blogging and the fans revolt!  :)

I headed up to Lansing to hang out with the old (emphasizing old) college crew last night, with the wife's blessing of course.  So I didn't have time to send off the limited news that we had.

Got a call from Dr. Robertson after the Tumor Review Board that was held at U-M Mott Hospital yesterday, and it was exactly as they believed they'd found.

The official diagnosis is a Medulloblastoma, and they will now officially begin scheduling the rest of the treatments.

The first thing on the list of things we're going to start battling is the surgery to install the port.

Not sure if I discussed this previously (so, so tired...), but they will surgically install a port in her chest, just below her skin, that will be used to pipe in the Chemo once we get there.  It will stay there for the entirety of her treatment, and be removed after we're given the "All Clear"...whenever that is.

I keep imagining the scene from The Matrix where Neo (Keanu) gets that information jack in the back of his head to learn all the martial arts.  I wish it were that cool.  I'd sign up for that in under 2 seconds, no matter how much pain it caused me.  Alas.

They said they'll call us on Monday(ish) and schedule the surgery and the spinal tap they'll do at the same time to ensure that the cancer hasn't jumped on the neurological highway.


ps.  Shelley is starting to feel really guilty that she hasn't started mailing out thank you cards for all the gifts that we've been receiving.  She has way, way enough to worry about, so I'm doing a blanket (we've gotten several of those too) thank you for everyone out there.

Thank you so much for all the love, support and kindness that's been shown to us.  I don't know how people without a community of some sort survive this, let alone get their kid across the finish line in one piece.

Have a good day!

Thursday, September 20, 2012

This is a nitty-gritty post...

Hey All, a later post than I'd wanted, but it's a post nonetheless.

We picked up Anya today, and worked her back into the mix.  Amelie was just bursting with happiness to have big sister to play with.  Amelie is crawling/walking/cruising around the living room...but needs some serious guidance because she's no where near steady yet.

Shel said her steadiness was visually improving as the day went on.  It's so crazy (as I keep saying) to watch her brain literally relearning basic skills before your eyes.

Anya is acting up quite a bit, as you can imagine, as she tries to work through her brain how to handle the sickness and the attention that Amelie is getting.  I can't quite imagine what it must be like to feel so second fiddle...even though we're doing everything we can to keep her from feeling like that.  But in the end, the sheer safety stuff we're doing is bound to make Anya feel slightly different.

We've been recieving tons of gifts, cards, letters, banners, and pictures.  I haven't had the chance to round them up and take pics of them.  I spent all my time after the girls went to bed grading sub work.  It's awesome to not have to work and be able to spend time providing support for everyone...but grading subwork sucks.  But even with the offers from all the other teachers, I still feel totally awkward letting anyone else help me with it.  It's my kingdom and all that other claptrap.

Ok, back to details.  We met with Dr. Patricia Robertson, the pediatric oncology specialist who is going to be designing our Chemo regimen.  She gave us a TON of information, as well as several books, so we can get up to speed on what the next 6-12 months are going to look like.

First up is that tomorrow (Friday 9.21), they are convening a "Tumor Board", where a bunch of different doctors will get together and examine the evidence on a few cases, and then discuss their views.  The pathologist's report on the tumor will come before them, and they'll discuss that report and their opinions of treatment.  Assuming nothing earthshaking comes out of that meeting, they're going to move forward with scheduling chemo quite quickly.

We're looking at at least 6 cycles of Chemo, each lasting a month long.  She's going to get a "port" implanted surgically to handle the chemo drugs entrance into her body.  She's moving into Matt's cyborg territory.

For cycles 1-3, Amelie will be in the hospital for a few days for them to deliver the chemo, and then again later in the month for a few days to harvest stem cells at a certain point in the cycle. They will save these for the later cycles.

For cycles 4-6, they will give her what would be fatal doses of the same Chemo drugs...but also infuse her with her own stem cells.  They explained that this is basically a bone marrow transplant, with your own bone marrow.  During these times, Amelie will have to spend at least 2 of every 4 weeks in the hospital...and most likely more time.  So we're looking at January through April having Shelley and Amelie basically living at Mott in Ann Arbor.

For all the people who have offered to help us, this is going to be the period that is going to be the most hairy for us, and the time where we're going to need the most help. (that's why we're not asking you to help now.  See how we do that?  See....we're tricky like that).  More than anything else, what we will need is help keeping Anya connected, loved, stable and part of a community.

Anya will be staying at Grammie and Papa's place during this time (New Hudson/South Lyon area), and we would love Anya to have playdates/dinner dates/Skype Dates/phone dates coming out of the wazoo at this time.  We'll talk more details as we get closer to that.

After cycle 6, they'll reassess what's up with the tumor, and decide on things at that point.

So....from October 1st(ish) until April 1st... we're looking at the Chemo freight train.  It's going to be brutal. It's going to consume our lives.  But we know we can make it through.

Ok, I haven't taken a pause in nearly 17 hours.  I'm about to fall over.

Nighty night!

Wednesday, September 19, 2012

Took forever to post...want to know why?


Well, not all of us.  Anya is still at Grammies for tonight, as we wanted to get Amelie home, and in bed....and then sleep the sleep of the comatose for the night without the girls playing.

We'll work Anya into the mix tomorrow.

But I'm getting ahead of myself.  Today is a day of pictures and celebration.

I've never been someone who had any disdain for science, but I've never also been very interested in it. I've always been a story kind of guy...and the stories always popped up in Social Studies.  However, after this week I'd love to go take about 341342134 science classes.  Watching Amelie's brain rewire itself....literally video to video, has been amazing.  Go back and watch the video of her eating the first day.

Now watch this video.

There's only 3 days between these two videos.  Her fluidity of movement is amazing....and its only been 3 days!  I know I'm probably a little partial to my Amie, but that girl is in recovery mode!

Mema (my mother) had surgery on her foot the very same day that Amelie had hers.  So they haven't had the opportunity to come and visit.  But they made the trip from Looney Pier today to make sure they could see Ms. Amie.

With no cords to restrict her, Amelie got to go for lots of rides today.
Scrunchy Face!

...and then it was time for us to load up and head to the car!

Me and Amelie....on the way to the car
Scrunchy Face!

Group picture on the way to the car.

Amelie...all strapped in!

When we arrived home, the wife of one of my college friends (Go Michaelle!) busted into our place and cleaned up.  We hadn't expected to be gone for 8 days, and there was stink and rotten food and all sorts of nastiness going on.  She cleaned the place up, delivered a dinner and bottle of wine for us to enjoy tonight, and made us this amazing banner.

Just a close up of the left side.  Might even make this my profile pic at some point.

She also left us some organic veggies, and a present for each of the girls.

Amy Watkins, and her brood of boys, busted out their coloring skills and made us this totally awesome banner.  We had no idea we'd be getting out of there so fast, so we're going to hang it up at home.

Amie wanted to wave to everyone while she was eating her Chee-ohs.

Janell Couperthwaite (a former student) gave us 2 pints of honey that her family makes.  Bzzzz.  Bzzz.

Stefanie Halliday (my former Media Center colleague) had sent a package of books to Amie. 

There's a bunch of other things I could showcase, but I'm tired and need to schleep.

I really wanted to tell everyone how completely and overwhelmingly humbled we are by all the support we've been shown.  Between the bracelet drive, the cat pictures that are pouring in (we're going to take pictures and make a book), the letters from former students (Jesse, you made me cry at school), and everything else...  you inspire us and give us strength where we were most lacking.

We cannot possibly explain our gratitude.

With that, I bid you adieu...auf wiedersehen,  buenos noches and for Kaisa and Emma... hyvää yötä.

Tuesday, September 18, 2012

Moving on up...

This is not going to be a long, nor elegant post.  For that I apologize.

I sent Shelley off to sleep at 6:15p, since she'd been awake since she took over at 1:30am.  Since then, I've basically been grading subwork and older assignments, and designing two map tests for tomorrow. I'm almost caught up (I'll finish during prep and lunch everything else).  That's 4 hours more work than I wanted to be doing today, but c'est la vie.

Anyway, back to today.

Since Amie no longer has the ICP valve in her skull, and she was off the PICU floor, she got majorly downgraded as far as danger risk.  They let her wander free in the room, completely without any wires....for most of the day.

A good part of that time was spent on the floor in Shelley's lap, or in the high chair that we scored from somewhere.  Can you see how overwhelmingly happy she is to not be in bed?

Additionally, Shelley decided to play Physical Therapist for a while, and was making Amelie start using her legs and get moving around again.  A little terrifying to watch on some level.

Shel held most of her weight and wouldn't let her fall...but Amelie walked.  
It wasn't steady, but it wasn't a disaster either.

Finally, I promised a medical picture.  This is the suture site.
I'm moving it down for those who don't want to see it.

I made it as small as I could for those who didn't want to see it.  
Click to make bigger.

I'm off to sleep, as I have to work in the morning!

New Girl, New Do!

Woo!  It's a crazy good morning over here.  I stayed up until near 2am, and then Shel took the rest of the night.  We both got over 4 hours sleep...straight!

When I returned from sleeping and showering (amazing how much that helps), I hear this totally aggravated wail.  I walk into the room and see.....AMELIE'S HAIR!

She lost her ICP valve this morning (they had clamped it last night), and then took off her gauze cap.

I'm not sure I can properly explain how filthy her head is.

  • She has had her head wrapped in gauze for 4 straight days. She is a sweaty, sweaty child.
  • She had her head washed in red anti-bacterial, anti-microbial, anti-fungal soap before the surgery, which has died most of her hair a strawberry blonde.  It's like a bad dye job with Manic Panic
  • She has dried blood in her hair.
  • She has dried cranial-spinal fluid in her hair. 
It has a level of funk that is quite potent.
My feet while hiking do not come anywhere near as bad as this.
We cannot get the sutures wet for a week.
I have lived with dead rotting things in my refrigerator for months on end when I lived with 12 other guys in a house, so this is no problem for me.
Shel, however, is a clean person.  She likes things to be orderly and clean.  It's kind of fun watching her wrinkle her nose at the stinky funk coming off Amie's head.

Amelie enjoys eating.  I would too if I'd been getting my food from a tube for days.

They've left the IV in her hand for the time being, but she doesn't have any fluids going in.  I think we can all agree that she looks about as close to normal as possible.  

The healing ability of the human body is amazing.  3 days ago she had brain surgery.  5 minutes ago she patted me on the back and said "Night Night", as she closed her eyes to sleep.

Scrunchy Face.  'Nuff Said.

Oh yeah, they moved us off the PICU floor, and we're now on a normal Children's floor.  WAY lfewer status checks.  She's sleeping without her Pulse Ox and blood pressure cuff.  She still has her IV lead in, but no tubes connected to it.  The only wires are the heart and respiratory leads that are still there.  

They have mentioned that we might be going home tomorrow to heal up, because she apparently has some Wolverine blood in her.  We might need to start calling her Logan.  For those of you who don't get my geeky references, I apologize.  I'm a geek.  Proud.  Forever.

The next post I'm going to put up (in a few hours) is going to have pictures of her sutures.  I am fascinated by them, but they're going to be a bit much for I'm warning you now.  Heads up!

Monday, September 17, 2012

and crossing the line on the marathon day is...

Today was a really long day for everyone around here.

I started back to work, which is just plain insane considering how little sleep we've been getting. To attempt to have patience, kindness, and consideration while inspiring kids is just something that I had to try to achieve.  Not sure if I was that successful, but at least I tried...right?

But with some caffeine (which I'm not supposed to drink, really) and some loud/good music (the new Amanda Palmer album, which you can download and pay whatever you want for real) I can STAY UP ALL NIGHT.  YEAH!

Ok, maybe that was a bit too much.

But Shelley is now sleeping, and has been for 2 hours.  I told her she is not allowed to set an alarm, and that she must sleep until her body wakes her up.  She desperately needs it.

First up, a review of the day through pictures and video:

Returning to work.  I had set up my classroom door with these 4 pictures the day that everything happened.  I honestly had forgotten about taping them up before I returned this morning at 6am.  It was a WONDERFUL way to start the day, and gave me a great smile for the first hour, as I walked past them several times.

I love this picture.  She's STILL got the bow on her head that I put there yesterday from a present that Beth brought to us from her friends the Mexico family.  She is feeding herself.  Feeding herself.  3 days after freaking brain surgery.  I love it.  The sock on her hand is "hiding" her IV stuff.

Action shot!  She's eating so fast that it's a blur. No one can eat as fast as Amelie.  
Get out of the way before she eats you too!

This is the scrunchy face I was referring to in last night's post!  I love seeing this.  Love it.  

...and the live video version!

I picked Anya up from school today (in Hartland, MI) and we grabbed some pizza from Pizza House on Church Street.  I remember liking their pizza and its been about 13 years (when I lived in Ann Arbor) since I had it.  We had a blast playing outside for a while.  Anya said that the rock was strange because "it did not belong there".  I asked her to pose as a big frightening bear for me.

... it was such a ferocious bear that we needed a second picture of it.

Here is her kind and snuggly kitty cat.

After we grabbed the pizza, we met up at the hospital with Mom and Chanda, Shel's best friend since Kindergarten who had helped out all day (and took Anya back to Grammies for me). 
 Amelie was beside herself with how happy she was to see Anya.

They played for quite a while together, and then Amelie just lost her strength...but that doesn't mean that they couldn't snuggle though...

Amelie and Anya....busting out huge buckets of cute.

More later, as I want to respond to some of the emails I have sitting...