And the Beat Goes On

Today!  Today is the day!  Or today was supposed to be the day.  But thank goodness it isn’t.  Today we were going to be released from the RIC and begin our integration back into society.  But Aleck isn’t ready to leave, and neither are his parents.  He’s just started to make some real progress here over the last 4 days.  He no longer cries when I pick him up, he can sit comfortably on my lap while we read books and he hasn’t thrown up since Monday and that was all snot (he’s had a cold for almost two weeks now).  Even his stinker face, the scowling look he was giving everyone on the floor, is slowly melting away, sort of. Right now a new splinting system, jacket & hand pieces, is being constructed just for Aleck, and with our new release date we’ll have time to get him adjusted to the system before we go home.

Over the weekend I was panicking, and Craig was right there with me.  How could we leave right now?  He hadn’t met any of his goals yet.  He wasn’t sitting up on his own at all yet.  And what about getting him on his feet?  Sit to stand, they promised me he’d be doing sit to stand!  And on top of it all we still were working out the best system for the feeding tube.  On Saturday Aleck puked up his entire breakfast, which was all regular food through his mouth along with his bottle.  Then on Saturday night Aleck puked up his entire dinner, mostly a tube feed, all over his jammies as Craig was here alone trying to put him to bed.  The idea of bringing home this pukey baby with a feeding tube we barely knew how to use who wasn’t even close to moving well physically felt like a huge RIC fail.  On Monday morning, the pediatrician poked his head in on me at 6:00am as my alarm went off, and after removing my night guard dripping in drool right in front of him, we decided that no one was ready for Aleck to leave yet.  Too many unresolved issues, too many balls in the air.  Whew.

Of course we are exhausted.  Of course we are ready to be home with our family.  Of course our bodies, especially mine, are begging for our own bed to play a starring role instead of the weekly guest appearances.  Of course I’m tired of immediately putting everything back where it goes, following my own movements on our side of the room, making sure everything is in it’s place because if it isn’t not only is it lost, but there’s no room to move or set down a cup of coffee. But Aleck has made the most progress ever in these last four days and we are all feeling like we need the extra time to cash in on this new momentum and get him excited about his own potential all over again.

Our new date to leave is November 18th, a Sunday, and this way Craig and I can move us all home together and spend that Sunday evening unwinding as a family.  A Norman Rockwell version of us sitting by the fireplace watching 60 minutes.  No more swallow studies (he had one on Thursday, all looks well), no more upper GI’s (he had one yesterday, all looks well), no more barium poops, no more PCTs barging in on us in the middle of the night, no more mad dashes to the common room fridge to relabel all our food so it doesn’t get thrown out, no more medical residents to claim that someone unbeknownst to me stuck a shunt inside my child to drain brain fluid for a brain problem that doesn’t exist (now just calm down, the manboy genius saw the extra feeding tube Aleck had stuck down the back of his onesie on an X-Ray and mistook it for this “shunt”, all hell broke loose ie; I screamed, cried, freaked, figured out he was totally wrong and scolded him in front of the entire staff during my weekly meeting), and most of all no more sleeping on a pull out lounge chair.

Today is the day that Aleck is going to see his pediatrician for his 12 month check-up and I’m bracing myself.  I’m not really sure what for, but I’m just going to guess I’ve done multiple things wrong and have once again screwed up my child.  At least I don’t have to worry about allowing an hour to get there and park in that insane Northwestern/Prentice/Lurie Children’s parking garage that should be isolated and studied as an example of the worst idea in the city of Chicago since the parking meeter fiasco.  And even better, I scheduled all of Aleck’s therapies for before his appointment so if the rest of the day is a total mess, we can just go for a walk since our little man is always happy when he’s moving around in his stroller, aaaahh.

But yesterday was amazing.  Yesterday, while Aleck was on his feet in pt, his pt started to encourage him to take steps.  And there he was, with her holding on, kicking one foot out, shifting his weight on it, then kicking out the other foot, I had tears.  No, he’s not going to walk out of here, but just seeing that he’s even aware of this concept was a beautiful thing since he’s shown absolutely no interest in getting on his feet, or using them to move yet.  They are ordering this stander for us that will help get Aleck used to being on his feet, and when they first put him in it my heart dropped.  It just seemed like this device was a glimpse into our future, a statement that Aleck wouldn’t be able to do it on his own.  I was crying.  Our pt reassured me that this was simply to get Aleck used to being on his feet.  With this device we can adjust each part as needed to give him more or less support, eventually removing entire pieces to allow for more dynamic movement.  They can even attach large wheelchair like wheels that Aleck could operate with his arms to wheel around our condo.  Craig’s reaction, “We are totally dressing him up as Hannibal Lecter for Halloween next year, fava beans anyone?”

All in all, we are finally making some real progress here and can see a glimmer of light at the end of this very long dark tunnel, and are so relieved that we aren’t getting kicked out into the darkness itself.  So 10 more days of frozen dinners, mediocre cafeteria food, and gorging myself on Aleck’s pureed vegetables.  You are welcome to come and visit, just text me at 773-343-8020.

oxo