Picture Pages, Picture Pages!

Ever have a night where you feel...off?

Last night was one of those nights.  Instead of driving to the place in Belleville I've been staying, I went home.  Sat down in my own living room...drank one of my own adult beverages.  Wore my own house pants, and played a video game on my own TV.  I didn't blog, because I was in a poopy mood, and thought that anything I spewed out to the internet would not add anything to the world.

So today is a new day, I had some good moments at school reminding myself that my students are just human, and not doing terrible things because they're out to get me.  It's just that some of them are ill-trained puppies who need a bit more love and a bit more structure.  Ahhhhhh....

I kicked out Shelley tonight, and made her go home to sleep in her own bed.  I'm hoping by now she's snoozing away.  

Last night at the hospital was really nice.  We got official go-ahead to walk outside, and the warmer weather today, and the crisper weather last night was a real treat for Amelie.  We walked outside for about 45m around the hospital grounds.  Amie kept asking for more, but we knew that it was tiring her out, and didn't want an end of the day tantrum because she was overly tired.

Before we went outside, we checked out the 8th floor U-M Football themed playroom.  As I've mentioned, the U-M Football team has donated often and generously to the Children's Hospital, and this place was swanky.  It's about the size of a small restaurant inside, and had a ton of room to run around, climb on stuff, and have a blast. 

Amelie was worn out and wobbly today, so she was holding Momma's hand the entire time.  I tried, but she didn't want to hold my hand.  I'm chopped liver.  :)

This was as we were getting ready for bed.  I'm posting this just for y'all to see a bit more detail on her hair loss.  Most of the floofy curls on the sides are gone, and she's really, really thin in back and on top. I brought all of Shelley's knit hats to the hospital so she could see which Amie could use in the weeks/months ahead.  

Right now she really likes the "Lamb Hat" that Momma knit.

(This is a picture of her pre-surgery, for those interested)

There's a lot of really cool artwork around the hospital, but I'm not saying this is one of them.  

However, I am saying that this painting totally rocks.  I love medieval bloodletting!

This is one of the cooler artworks.  It's an origami Sheep!

Origami Hedgehog!

For those of you who don't know, Hedgehogs are good luck in Russian culture.  Shelley lived in Kazakhstan (not the fake one from Borat, but the real one) when she was in the Peace Corps.  We have a lot of Hedgehog things around the house, and tend to buy them as presents for Micah and Marina in Denver, and Wendy in DC when we see them.  I wanted to buy this, but it wasn't for sale.  Cool though!

Finally, there's this whole series of Mashup Superhero + knitting pictures by the elevators on our floor.

Not sure if any of you know that Shelley is a truly amazing knitter.  Usually when I say things like that, people are like...yeah.  

Washcloths are really cool. (rolling their eyes)

However...check these out.

Can you tell me that's not amazing?

or those?

So tomorrow will bring us several more medical adventures.  A detailed list of tomorrow's activities.

• Amelie has a surgical procedure tomorrow morning at 8:30a where she's getting a 2nd port put in her leg.  This is a much larger (two lumen) port that will be temporary.
• This port is to facilitate the stem cell harvest that they're going to be doing.  She'll receive her stem cells back in cycle 4 of her Chemo to help her deal with the intensity of the chemo.
• While her port is in, Amelie cannot walk, and might not be able to get out of bed.
• Amelie is 2 and does nothing but move.
• Tomorrow is going to be a hard day for everyone.
• I'm taking tomorrow off work to make sure that Shelley has all the help she needs.
• If they don't harvest enough tomorrow, they have to harvest again on Friday.
• They'll take the 2nd port out when she's done with the harvest.
• Tomorrow is Amelie's birthday.  She's 2.

One last thing, as this just happened as I was typing.  A former student, who also works here at U-M Mott, came to drop off some presents for the girls.  This particular student, Leia, was also a preemie like Anya, and was a student of mine when Anya was born.  (Preemie Power!)

She and I talked for a while (I'm starved for non-cancer conversations, btw), and as she was leaving, she showed me the T-Shirt she designed and purchased.

Shelley and I were just talking about how we need something like that, and there she shows up wearing it.  

Although Shelley would totally say that I needed a color other than white, because I ruin stuff so fast by being a messy, messy boy.  MESSY BOY.  :)

So, to sum up:

1. Lots of medical stuff tomorrow.
2. Leia is awesome.  
3. Amelie's birthday is tomorrow.  She's 2.
4. Shelley is at home sleeping.
5. I am at the hospital.
6. I need to sleep now.

Night!

Busy Day, lots to write about...

I worked today, so just getting to the blog quite late.  For those of you waiting with baited breath, I hope your desire for news and notes will be sated by my wordsmithery.  That's not a real word, by the way.  I just want it to be.

It was a Busy Day today, as my parents came up to the hospital.  They asked me what Shelley might want to eat, and I told them what might be a good choice to get.  When I said what to get, I was suggesting they get this as a means to share it, and eat together.  I told them to get the vegetarian maza from Palm Palace (it's easy to get to from the freeway, but not the best Middle Eastern, by any means).  They ate lunch at Palm Palace, and then brought the entire Maza tray to Shelley to eat by herself.  Shel was overwhelmed, to say the least.  We dined well tonight.

After I got to the hospital, Amelie woke up and we sat in the family lounge together, for a change of pace, and ate.  Amelie was really into eating bread tonight, but nothing else.  It's better than nothing else I figure.  She at 3 loaves (they're about the size of a bottom of a McDonald's drink) of pita, and had her chipmunk cheeks packed on this picture.

Today is also National Perinatal Loss Remembrance Day.  Many of you don't know that we have had three pregnancies, but only gave birth to 2 kids.  In 2009, we became pregnant with a boy, and Shelley miscarried at 20 weeks (mid-April).  We had thought that we had "lucked out" with having such a healthy Amelie after the 8 week early Anya and the miscarriage for Nathaniel, but....  welll....not so lucky, eh?  Still waiting to see if that luck holds out actually...

Anyway, we miscarried, and Shelley asked me to bring a candle and a lighter to the hospital today, as part of the day is about lighting a candle to bring light and remembrance to the losses that were felt, but not forgotten.  I brought them, but convinced her that it would be a TERRIBLE idea to light them in the hospital.  She agreed with me after some 2nd and 3rd thoughts.

But it was still a good day for some reflection on the journey that we've taken with our kids over the last 6 years.   I bought Shelley some foot rub lotion when I bought her the candles from Whole Foods, and hope to get to put that into use tomorrow after work.

I kinda want to build a sign like Wiley Coyote regarding Amelie.  Someone asked me today how I "manage to get to work" with all this going on.  The simple answer is I am a brilliant compartmentalizer when I need to be.  When I am working, and not talking about what's going on, I don't think about it.  It's on a shelf.  When I get off work, it immediately clicks back into place....the real reality.

So I've been having a tough time with incredibly well intentioned people who want to let me know that they're there for me and be concerned, but at the same time I'm totally breaking all that compartmentalizing and going to get all messy and emotional at work.  Not a good thing.

The good thing about teaching 8th graders in this scenario is that they are totally swirling in the vortex of adolescent egocentrism.  This is the basic idea that they are the center of the universe, and everyone else is watching them.  They very, very rarely ask about anything going on in my life, and just want to get stuff for themselves.  I don't begrudge them this...I applaud it.  It helps me get through my day, and focus on keeping my insurance.  :)

Ok, it's 9:40, and I know I'm going to pop awake at 4:30a again tomorrow morning.  That's fine when I'm sleeping in Howell, as I have an hour drive.  However, I'm sleeping in Haggerty Sub in Belleville, and I have a 4.5 minute drive tomorrow morning.  I think I might have scared Tom when I arrived at the middle school at 5:22am this morning, ready to go and all chipper.  So I'm headed off to sleep!

Night all.

Pictures! In the post! Not at the hospital....

Greetings All,

As I mentioned in the last post, I stayed there last night, and it was a hot, stinking mess.  They woke up Amelie every 90 minutes for something, whether it was antibiotics, vitals, drawing blood, or general tomfoolery.  Each time they woke her up, it took her (in general) 30 minutes to find sleep again.  

If you're doing math, that means she slept for an hour, they woke her up.  Fall asleep, wake up.  Repeat. Repeat.

The docs came by in the morning, and I was a little less than gentle with them about bundling the procedures overnight, and letting her sleep.  They totally concurred, and we'll see tonight if they can pull that together.

Amelie had a great morning, however.  She doesn't care about sleep.  Why would anyone care about sleep?

So here's the promised view out of our window.  Pretty shabby, eh?

This is out another window, facing south.

Anya came up to the hospital today with my sister, and was having a blast playing in the "cage".

The top of crib is a plastic bubble.  Anya liked the way this looked too....

So.  This looks like a strange picture.  I lacked a proper black blanket to showcase them, but figured that my sister's black pants would work.

The hair loss has started, and it's quite sad.  There's so much power and identity in hair...and so much of a forced acceptance that this is really happening, and its not slowing down.  Here's just a single poof of hair that was on Shelley's sweatshirt after they read stories. 

Lots of good, some bad.  Time for me to sleep, as I desperately need to go to sleep right now.  

Floating on a the fumes of a good day...

As you might imagine, things can get a bit loopy when you spend all day in the hospital.

You're in control of virtually nothing, you can't really plan anything, and you just have to go with the flow of things.  For people who like to control their reality tightly, I can imagine this experience would pose a real problem to their sanity.

For Shelley, who likes things a very specific way most of the time, she has coped extremely well.  She does it through keeping our hospital room really clean and neat.  I do my best not to screw that up, being the traditionally disorderly boy/man that I am.

I say this as a prologue to telling you how today was a really nice day, and surprising in many ways.

I slept at home, in my bed last night.  We both sleep sooooo much better in our bed, not only because it's the best bed that's ever been made by human beings and seems to be made of small gnomes whose job it is to gently massage your aching muscles while you sleep.  We pay them in homemade cookies, which they love, by the way.

I got to the hospital around 9am, and Amelie was as cheery and chipper as we've seen (we posted that video for proof, yo.)  Shelley left the hospital for a few hours, braving Ann Arbor game day traffic.

Amelie has been doing better with fluid intake, so they gave us the OK to get off her IV (which we call her tail) and move around.    We sat on the window sill (they're large enough to fit me and her and Anya) and looked out at Nichols Arboretum and the fall colors, which are simply stunning.  I'll take a pic tomorrow to share.  We watched the cars drive around the hospital and on Fuller...kids playing soccer as the rain moved in.  We made funny faces into my camera.

Her incisions are also healing well.  This is her tiny incision, but feel free to not click through if you don't want to see it.

She kept asking to go for a walk, so I pulled out the stroller and we loaded into it.  It was great.  We walked around the 7th floor for almost 2 hours, saying "HI" to everyone, making friends, and seeking adventure.  We found a set of soccer goals and a basketball hoop, which delighted Amie to no end.  The girl loves to run, to kick.  That alone is hilarious as she was running up and down this lonely hallway kicking a soccer ball (I was being present in the moment and not documenting, which should make Miss Yaros smile).  We kept doing loops and loops of the hospital, and Amelie was in her element.

Sarah (the woman who introduced Shelley and I) came up for a visit, and then I headed out to see a movie.

As I've said before a week or so again when I saw the movie Looper, I love to see movies.  It's the primary way I shake off all the creepers and vines that are growing on my brain.  I escape into a story (doesn't matter if it's happy or not), find solace in it, and feel renewed (unless it royally sucks...).

Anyway, tonight I went and saw Argo.  It was fantastic, perfect, amazing.  Best movie that I've seen in a long, long time.  Perfect 10 for me.  I do not give 10s much.  Almost never.  Inception was the only one I could really think of in the last 10 years. Netflix isn't allowing me to look at my ratings, but can't really think of anything else.

Came back to the hospital, Amelie is asleep.  Kicked Shelley out after we debriefed, and now I'm sitting here reflecting on the day.

A friend (who I've only ever talked to over the internet) said to me tonight that if he were in the same situation: "i feel like i'd be in between "crying all the time", and "roving the streets at night looking for a hobo to punch"

To that, I can only say that I agree...until I feel the amazing and humbling and overwhelming support for my little girl, and for us as we try to shepherd her through this nightmare.  The gifts, the cards, the food, the messages, the posters, and everything else I'm not mentioning is so heartwarming to feel and see and experience.

I worked as a counselor at a camp two years ago (just as Amelie was getting ready to arrive), and they worked on what they called "BE" goals...to be better everyday.  I worked with my junior counselor, who I name checked above, and came up with the idea that I needed to "BE Present" for my family more, and in my life more.  Think less about where I was going, and focus more on where I was.

It's crazy to think that it took everything that's happened in the last calendar year (October 11th 2011 to today) to make me fully and solidly present in my life.  For all you MASC people out there.  Thanks for planting that seed.  :)

Night all.

Whatchoo mean I can't post videos?

Hmm...  as of yesterday, there's a new restriction of what you can post with Blogger using the hospital's internet connection, and I can't embed pictures or videos into the blog due to that filter.  I think I might need to go learn to use those bypass programs that I used to hear the kids talking about at school.

So, if you want to see those things, I'll drop links to them.

For example, we shot a really sweet and nice video of Amelie this morning.  She's chattering away, much like a certain big sister.

So, if you want to see it, you'll have to click on that bit of text that is a different color above.  Same with pictures.

If you want to see this picture or that picture, you'll have to click on the word this and that from the beginning of the sentence.  Make sense?  Good.

(I can't help teaching.  I really can't.  There might be one person out there who doesn't know what a hyperlink is, and I must educate them.  I can't control myself)

As an official thing, we're here until mid-week at the very least.  We met with Dr. Yannick, the bone marrow doc who is overseeing the stem cell harvest, whenever Amelie is healthy enough to do the harvest.

Go watch the video.  She's a cute kid, and is at her cutest this morning.  We love seeing that, as its a signal for us that she's bouncing back a bit.

...or maybe she's just the cutest zombie that we've ever seen.  The Walking Dead does restart this weekend... ya never know.

Photo post? Testing

Seeing if I can back door around the filter w my phone.

Anticipation makes the heart grow fonder?

So that's a comment I've heard for a long time.

Well, my heart grows no fondness today, because the anticipated infection is HERE!  Woo!

Ok, that's not quite the right tone.  I don't think it's alright to cheer on an infection, but at least there's no waiting around for it to show up.

Amelie had a temp somewhere in the range of 101-102 when we woke up, so Shelley get the process going to get down to U-M, after dropping off Anya at Grammie's place.  I think Beth is going to go grab her from there and keep her with Yit Yit and Charlie for a few days.  She could even get in some Strzalkowski grandparent time too... :)

We're in the ER for now, and will most likely be admitted for a few days to nuke the infection.  We were scheduled to come down on Sunday anyway for the harvesting of stem cells, but who knows where we are with that.

Have I ever told you how awesome my co-workers are?  I got the call that Shel and Amie were coming over here and within 10 minutes had people to cover my 4th, 5th and 6th Hour classes.  I was out of the school within the half hour.

Not sure why, but the filter in the ER is now blocking pictures from being uploaded to blogger.  Hmmm...  I'll drop them in later.

Update.  We're being admitted now!  Woo!