Sunday, October 7, 2012

Sweet Home......Howell. Where the skies are so blue.

Home Sweet Home.

I didn't post yesterday because we wanted to take a day where we just ignored the rest of the world and lazed about the house.  It was needed, it was nice. Sorry to have made my legions of fans weep for the lack of posting.  :)

However, more than anything else, yesterday was about laundry.  We did laundry for most of the day in 35 minute intervals.  For most of you, laundry is a thing that is a start and forget about kind of thing. It's an easy thing that y'all do that is part of your day...or weekend or whatever.  For us? We... live in a quirky place.

Shelley bought this condo when we were just starting to date, and she bought a unit in the first building in the development.  In subsequent years, we learned the the developer was a crook, had a history of ripping people off, promising things, etc. etc.  He pretty much abandoned the development at some point, and there were buckets of lawsuits that were filed, all solved long ago.

The reason I'm telling you all this is things are just not up to spec in our building, and one such thing is the dryer vent.  Our dryer vent, the ductwork that leads from the back of the dryer in our pantry to the outside world, venting the heat and moisture, does not work.  There is a duct opening there.  However, nothing leaves that room.  We've hired people to snake it, the association has done the same.  They've basically told us the next step is to rip out all the walls where the ductwork travels in order to figure out where the blockage is at...or rebuild the whole darn thing.  We'd incur the cost for that, and always opted out of that.

So what do we do, now that we can't dry our clothes?  We hang them.


Lots of hanging things.  This is just two pictures.  I could have taken another 10.


We have two dryer racks for the things that can't be hung very easily.  We then use hangers to hang things off of every surface that we can.  Door frames?  Check.  Shower curtain?  Check.  Chairs? Elliptical machine? Check. Check.

Yesterday we harnessed all our extra hangers and had about 60 things hanging, and both dryer racks maxed out.  We are well humidified, let me tell you.  That's a lot of laundry.  I think we did 8 loads.



If you didn't look too closely (at the massive head scar and the port beneath her shirt), you'd never know that anything has happened with Amelie.  She's just running all over the place, and saying all these new words.  It's really cool to hear her vocabulary fleshing itself out so well.  She stopped saying "Gah Gah" and now says kitty or cat.  She now is saying the specific thing she wants to eat (when she does) and not "MMMMMMMM" like she was a month ago.

This morning she looked at me (I was bleary eyed, as it was 6:05a) and said "Daddy.  Bread.  Jelly.  Amie eat."  That's about the longest string of words she's put together...and in the middle of this chaos, I think it's about the best I could ask for.  We've seen no cognitive delays or changes of any kinds yet.

Actually, that's not completely true.  She perseverates on things way, way more.  What I mean by that is that she wants to do the same things over and over, and is WAY more stubborn when we try to redirect her.  Sometimes to the point of utter meltdown and its just not worth the fight.  This was not there a month ago, but if that's the worst thing that's going on, we're winning.

More than anything else, Amelie wants to play with Play-Doh.  Some days she asks to get it out 10-15x....  She'll play with it each time for between 10 and 60 minutes...we're talking hours of playing with Play-Doh.  ...and the girl has really specific rules about what  you can and can't do! I keep getting her really mad by doing things I'm 'not supposed to do'.  She likes to roll out the Play-Doh and press a cookie cutter into it. However you're NOT ALLOWED TO TAKE THE CUT PART OUT.  I didn't know that.  Now I know.  I've heard that's half the battle.





We had two sets of visitors to the house after we got out of the hospital.  My sister was first.  She came into the house, cleaned up, and stocked our fridge.  She bought a ton of stuff that will help with Amelie once she starts to eat more.  More on that later.   The balloons tend to sit at the peak of our ceiling in the living room, which is quite high as you can see.  My sister came out and really made the place look great. Balloons, tons of food, a juicer, a "ninja" and fun cards all around.  Didn't take pictures because I was just plain worn out.  But trust me when I say that she put a ton of effort into having a great homecoming.

In regards to Amie's eating, she's pretty wary right now.  She's eaten about a days worth of food over the last three days, but that's within the boundaries of what they said could happen.  She had a few pieces of toast this morning (with magic sprinkles of course), and some orange juice.  Some mac and cheese for lunch, some pasta (with broccoli hidden in the sauce) for dinner last night.  Some cookie this morning.   We're totally aware that she's not rocking the protein yet, but we need to get her eating something before it needs to be the correct somethings.  

We also had the Jim and Linda Heraty out for a bit, as they were attending a wedding in our neck of the woods.  I'd have taken pictures of the cookies and arrangement that they brought, but the girls destroyed them with their greedy fingers and mouths before I had a chance.  SUGAR!

I'd mentioned this before, but Anya has been really enraptured by the medical play that U-M introduced to her while Amelie was recovering from the brain surgery.


We took a video of this scene, but both decided that it was WAY too graphic to show, not to mention creepy.  Kitty (this is one that Sarah got Amelie) needed surgery, so she's on her back, arm prepped with an IV and having her belly sawed open with an IKEA butter knife.  Not exactly precise medical instruments, but I'm sure Kitty was in no position to complain.

So far this morning Anya has broken a leg (and hopped around the house while retrieving medical supplies), used about $5 in gauze/tape/bandaids from the dollar store, and all sorts of other medical mayhem.  The kitties, dolls, uglies and all other friends look like a tornado (and a mean one at that) came through and really roughed everyone up.

Schedule wise:
  • We are back to U-M on Wednesday (10/10) for PT, blood work with pediatric oncology and a few other things.  
  • We're back the following Sunday (10/14, a week from today) to start the stem cell harvesting.  That could be anything from an 8 hour stay to a 6 day stay at the hospital, depending on how the harvesting goes and how strong she is.  It also looks like it'll be the first in our predicted long string of blood transfusions.  Feel free to go give some blood somewhere if ya want to help.   :)


Have a good Sunday out there y'all.