In the Home Stretch

On one hand I can’t believe we only have one more week.  On the other hand, we have another full week of our little man stuck in this crazy cast.  It’s added at least 10 pounds to his tiny frame and believe it or not but those 10 lbs, combined with the extreme awkwardness of the cast, have reeked absolute havoc on my body.  Everything is starting to hurt.  My back muscles on both sides are sore, my joints in my legs and pelvis are aching, and the pain is radiating down all of my extremities.  That’s the bad news.  The good news is that somewhere between week 3 and 4, we settled into the cast and all of its limitation.  Aleck hasn’t been on Valium for over a week.  No more crying when we get to Goodnight Moon, and he goes down for all of his naps without a peep.  We’ve even had 2, count them, 2 full nights of sleep in these past 5 weeks.  He’s figured out how to move himself in his crib to grab at his pacifier or his favorite stuffed animal, Hop-a-long (a giraffe…don’t ask).  When he wakes up in the morning he’s no longer crying hysterically, this relief has only come in the last few days, and everyday we are finding more activities to do while stuck on his back.  I even brought back his play gym, a great toy that became obsolete once he started rolling over, but now I can stick him in there for 15 minutes or so and make his lunch or change the laundry.  I think he likes it better now that he ever did since he can actually reach for most of his toys.  Yup, life around here hasn’t been too bad.

In fact, it’s finally gotten much closer to what I envisioned this period to be like.  Without the heavy stress of doing multiple forms of therapy every day, we can spend time laughing, getting buried in clean laundry, and going for long walks.  Right now we are doing 30 minutes of his new splints, a session of tummy time on a pillow, and we read books everyday, but this sense of urgency and this list that felt so overwhelming for so long has dissipated and I find I’m just enjoying his company minus all the pressure to do, do, do.  The part that’s been so different from what I pictured, is that we’ve never gotten him fully into the TV.  For the first four weeks he just didn’t pay attention, and now that he’s starting to pay attention to our morning stretches of Good Morning America, or Starting Point, I find myself turning off the TV and putting on music instead.  With only one week to go, why start now?  Especially with all of the fun apps I’ve found to download on both the Ipad and on my phone.  For my phone(a Google platform) “Baby Rattle” has to be my favorite game and he’s enjoying it a lot.  On the IPad we love “Music Sparkles” where he gets to play the drums and the Xylophone.  That game is so good he has to wrestle it from his Aunt Michelle on a regular basis.

Even changing diapers has become much less of a chore.  Right before a nap, after a particularly messy experience, I found myself quickly changing out the panty liners so he would sleep perfectly clean, the task I originally found to be the most daunting of all.  Just like everything else we’ve been through during this past year, we adjust.   We get used to the new and the different, even the waking up 7 times a night, we get through it, and it never ceases to amaze me just how adaptable we can be.

And now, with his first birthday around the corner we are preparing ourselves for another adaptive moment.  We will be going into an inpatient program at the RIC downtown for about two weeks.  And just like a hospital we will be staying there for the duration of the program and I’m trying to line up all our ducks.  Got my list of questions and if I could just get someone from admitting to call me back I’d feel a lot better.  I’m very nervous about the program, more about keeping Aleck and myself comfortable and sleeping decently through the night.  We’ve already discussed with his surgeon how much pain he’ll be for the first two days, and he’ll be pretty uncomfortable, so they are prepared to write us some new scripts for narcotics to keep him happy.  But on top of it all, it’s his first birthday.

So what are we doing to mark the occasion you ask?  Probably not a whole lotta.  Just like with the surgery, I’m having problems seeing past this big hurdle and making future plans.  Maybe it’s just my way of coping, but everything feels better to me in baby steps, less overwhelming.  Originally we thought a huge party to celebrate what we’ve been through this year and how much we’ve accomplished with Aleck’s care in one year of his life, but now I’m thinking small.  Like a small brunch with family, one where Craig and I actually make the food instead of it all being brought in, one with some light libations, one where we can look at those closest to us and just say “Thank You, now let’s eat.”  Even though a part of me is sad we aren’t going to do something large and memorable most of me is just relieved not to have to plan, think, prepare, and just focus on what I need to focus on, our little man.

On the whole I’m really excited about going into this inpatient program, and we can have visitors so just text me to set something up so it won’t interfere with his schedule of therapies.  The RIC is just down the street from the Northwestern Hospital Campus and we can take Aleck for walks right along LSD.  I’m definitely nervous about establishing his routine once we are there, getting him down and sleeping at night, hoping that he won’t wake up too many times.  The big issue is that if he doesn’t sleep well he may not work as well, and this is the time to work.  The biggest issue is how long I can go on almost no sleep.  I believe I get a lounge chair as a bed and there may not be any room to set up an inflatable mattress so lounge chair it is.  Yikes.  Maybe I’ll have to sneak in a flask of something to help me unwind in the oh so comfy conditions.  But like anything else that has gone on in the past 11 plus months, this is not about me, and once again I’ll find the energy somewhere and get through it like we always do.