In the Trenches

We’ve finished our first week here at the RIC and just like everything that happens in our life, never a dull moment.  Just as we were getting into the groove, adjusting to the schedule, figuring out the best way to clean the french press (fill it with water and pour the coffee grounds down the toilet…sweet), the fit hit the shan.  Friday night was going to be my first night to sleep at home and to sleep in for the first time in, well, over a year.  I was so excited.  I mean, one day a weekend I “get” to sleep in at home but that means waking up when Craig wakes up to take care of Aleck, and then having Craig barge in on me sleeping like five times because you know he just wants me out of bed, and very often he does it with Aleck in hand saying something extra nasty when I shoo him out of the room like, “Mommy doesn’t really love you”, very nasty stuff.  But not this time.  This time I wouldn’t have to rush back to the hospital, no doctors to meet, no urgent news to hear, I could actually enjoy having the house to myself.  Sweet.

After sleeping for 11 hours (super sweet) I went back to the RIC and found that all I wanted to do was lie down again.  Ruh Roh.  Maybe I relaxed too well, maybe I slept too much, or maybe I was coming down with a 102.4 fever and some crazy virus that would just knock me on my ass.  Yeah, it was the third.  For the first time in over two years I got really sick.  So now what?  Craig covered for me on Sunday while guilt dragged me back to the RIC where I simply napped on the chair while the boys went shopping.  But what about Monday, and Tuesday?  I mean, I was still sweating a way high fever Sunday night, how was I going to get better and make sure Aleck was taken care of at the RIC.

Don’t get me wrong, it’s lovely here, it really is.  The staff is sweet and fairly attentive, but they don’t have baby monitors in the room, they don’t know how to make his bottle or how to coax food down this very finicky eater of mine.  I haven’t taught them how to put on his splints or his braces, or turn on his mobile, or put on his soothing sounds giraffe.  But most importantly, who was going to keep him from cracking up during PT by singing “Wheels on the Bus” until they turned blue in the face? Enter Heidi.  Yeah Heidi!!!

She sent me home, helped Craig put Aleck to sleep on Sunday night and came back bright and early on Monday to get Aleck rolling on his day.  Though I had to run back for a meeting with his surgeon, I then went to the doctor, confirmed it wasn’t flu or strep, bought gallons of chicken soup from the Bagel and went home.  Sweet relief.  Everything hurt and all I wanted to do was sleep.  I was even more relaxed knowing my mom was on her way down for the afternoon shift and I was able to secure her for Tuesday as well.  So now I had until Wednesday morning to feel better, and with the proper combination of Tylenol, Alleve, and 2:30am showers to try and bring my entire body to the same temperature, I made it.  I’m back at the RIC and boy was I missed.  Not quite sure who missed me the most, the PT’s or Aleck.

What we found out was that the two days I was gone ended up being a bit of a wash as far as PT was concerned, our little man just wasn’t having it.  However, on Saturday we met a PT who spoke fluent baby Aleck, and she’s now our lead PT for the duration of our stay.  Our OT, who is pictured here, has been amazing with him from day one so she will stay our lead OT.  Team Aleck has been solidified and I’m feeling pretty good about it all.

This morning we had our team meeting where we sat down, reviewed what he was doing, what he wasn’t, what we want to work on, and it was announced that our current exit date for this program is November 8th.  Make no mistake, I let everyone here know that we would and wanted to stay longer than than the two weeks if possible so that Aleck could get the most out of this opportunity.  It’s been one week and he’s not even close to where he was pre-surgery.  He still can’t sit up on his own (being put in a sitting position alone and staying there), he can’t roll over, he is barely tolerating weight baring on his feet, and that right leg isn’t making much movement, we’ve got a ways to go.  We set some good goals and I hope our exit date will revolve around these goals, which I think are both developmentally appropriate and fair to Aleck’s capabilities.

1.  He needs to be able to get to a sitting position on his own

2.  He needs to be able to bring himself from a sit to a stand.

3.  He needs to be able to bring food to his mouth.

4.  He needs to be babbling/talking on a more regular basis.

Speech thinks he can talk more than he’s letting on, we honestly thought he’d be talking at about 8 or 9 months when he had already been babbling, dadada, babababa, then mamamamama.  The last one he used to do all the time.  The general consensus is he definitely understands more than he speaks and he might be holding back.  Hmmm…is that because Mama talks all the time?!?  Oh boy.  We’ve certainly got our work cut out for us.

So since we are stuck here eating frozen dinners and Campbell Soup, please come and visit us.  If you are so inclined, you can bring us a home cooked meal.  Those Lean Cuisines are pretty yum but certainly not made with love.  Just text me what day you are interested and we get our schedules the night before, though we are usually free after 3pm everyday.  Craig comes here after work every night, and of course we are here Friday and Saturday nights as well.  What can we say, we know how to party.  Plus, if it’s nice out, we can go out and about and we are in an awesome location.  Between Michigan Ave and the lake, not too shabby.

Oh, and FYI, when I found out that we’d be here an additional two weeks I definitely was excited at first for Aleck, and then stopped and thought, oh, an additional two weeks of sleeping on the pull out lounge chair, of not being together at home, of Craig and I not sleeping in the same bed (maybe the last one isn’t so bad, everyone needs a break, right…just kidding baby, you know I miss your snoring dearly).  At least we’ve got a comfy foam mattress pad to make us feel a little more comfortable.  Whatever doesn’t kill us…