Finally Starting to Breathe

It’s not that I thought coming home was going to be confetti filled parades up and down my street, and I certainly didn’t think that now we were out of the RIC it was smooth sailing from here on out. In fact, I knew before we came home, that being home was going to be almost more chaotic than being at the hospital.  With three sessions of occupational therapy a week, three sessions of physical therapy a week, speech/feeding specialist once a week, nutritionist and social worker every other week, just balancing everyone’s schedule has taken me almost a month.  Funny, with all of these people I’m keeping track of, keeping on top of, I feel like the CEO of some totally insane company that costs me money instead of making me money.  I swear, when Aleck is a little older, I’m going to re-do my resume and figure out how all of this work we’ve done over the last 14 months can translate to some sexy high power position at some Fortune 500, I’m certainly now qualified to run one of those.

With our current OT getting ready to head to maternity bliss we have a new OT who has started with us and another OT that we see at RIC, so three OT’s in total.  And with our new schedule at RIC, my regular PT at home can’t do both sessions so now we have two PT’s at home, and we’ve already worked with two PT’s at the RIC, making that 4 physical therapists for one 14 month old.  Add in the rest and I’m officially keeping track of 10 different people dealing with Aleck every two weeks.  This makes some of the photo shoots I’ve produced, keeping track of 150+ people traveling through the city shooting all over major locations (Buddy Guy’s, Chicago Theater, renting an EL train) , like a cake walk.  Maybe there’s a reason I used to be a producer, the skill set is virtually the same.  The big difference, is that with my current job it is a matter of life or death (ok, we are mainly out of the death stuff), and working as a producer I never got close to life and death situations, even though most of my clients would beg to differ.

Frankly being back at home has been overwhelming.  I haven’t been feeling well, I’ve been really stressed out with Aleck’s eating and regurgitating habits, and since we are still doing sleep feeds I only get a full nights sleep twice a week and that’s only if I’m lucky as the little man spit up in his sleep Saturday night, knocking me down to one full nights sleep a week.  And on top of it all I’ve been horribly lonely missing the constant adult interaction and support we had at the hospital.  When Aleck pukes all over his crib I only have Craig to call for, and that’s only when he’s home.  Otherwise I’m alone trying to give him an emergency bath before naptime so he can be well rested for his next round of therapy.  What’s funny is that since we are home now I keep acting like I’m supposed to be right back in my normal routine, as if there is something wrong with me since I’m not just instinctually jumping back into some perfectly choreographed schedule.   But what the hell is my normal routine?  I don’t even know what’s our normal anymore.  When the new OT asked me about our stretching and acitvity routine my mind went blank.  I had nothing to say.  The voice in the back of my head was telling me to say something, and I know for the last year we’ve been hard at work, but it was like I was a clean slate, starting from the beginning.  And finally it dawned on me, we don’t have a normal routine.  Nothing has been anywhere near a state of normalcy or routine in over three months.  The surgery was at the end of August, followed by 6 weeks in the cast, followed by almost 6 weeks at RIC, there hasn’t been a routine at home in over 3 months.  No wonder I’ve been feeling so off kilter.  No wonder when we tried to have my PT from the RIC over for dinner I undercooked everything and then fell asleep during dessert.  No wonder there is almost 3 months of unsorted paperwork stacked up in my office.  And it’s no wonder that I haven’t felt like myself.

Finally a lot of the unsettled feelings are starting to fade away.  The office is almost clean, the staff has their schedules, and I feel myself starting to get a little bit of a rythmn taking Aleck through his excersizes, wearing his splints, even meals and naps are feeling less stressful.  He’s not eating any better, but he’s gained a pound in the month he’s been home so that’s a huge win. Granted he doesn’t eat anywhere near what a boy his age should be consuming, and since his nose is still bothering him (6 weeks and counting), getting him to take his bottle is a huge struggle even though this wasn’t a problem at the RIC (after the feeding tube was put in).  So what should I be doing?  As I mentioned we are still sleep feeding him, 10:45PM & 2:45AM, and I’m grabbing him before he wakes up at 6:45AM to start his morning bottle while he’s still asleep.  But when can I say enough is enough?  When can I either decide there is an urgent problem to solve despite our best efforts to solve it, or that this is just who Aleck is and it’s time to stop stressing about it.  Recently I sat down with his pediatrician, looked him in the eye, and asked if I should be dragging Aleck to a new GI, a new specialist, to solve this food “problem” or can I start to say that this is just Aleck and allow myself to breathe knowing that we are doing everything we can to keep him healthy and well fed.  Believe it or not, he gave me permission to take that deep breath and it feels so good.  Letting go of the stress of his eating issues has made a big difference in my demanor and we’re starting to have a lot more fun around here.

Even Aleck is starting to have a better time.  He can sit up for long periods of time, he’s enjoying tummy time learning that he can operate some of his toys, albeit one handed, while in this position.  Supported standing is less of a chore as Chanukah brought him a flood of books and puzzles that he enjoy while up on his feet, and his upper body has loosened up overall as we’ve returned to a regular therapy schedule with Aleck’s number one physical and occupational therapist, mom.  While enjoying my one nap a week on Saturday Craig burst in with Aleck, all aflutter with excitement.  He wanted to show me Aleck’s new trick.  Craig put Aleck’s pacifier in his left hand and then Craig brought that left hand up to his mouth and Aleck took his paci.  Then they did it again with his right hand.  In the past Aleck has been very resistant to us bringing his hand to his mouth even though we’ve been doing some form of that activity since he was born, but now he seems eager to let us show him just how capable his body is of participating in some very basic but necessary activities   Even bath time has become a whole new production where Aleck used to just barely sit there, watching the water pour out of the faucet and enjoying us sprinkling the warm water all over his little bottle, bath toys sitting all around untouched.  Now he kicks his legs with glee, he’s reaching for his toys in the tub, and overall acting like a normal baby boy.  For us this is always a huge relief, getting glimpses of the regular baby inside of him that wants to get into stuff, stick his fingers in his food, pick up his stuffed animals, suck on his plastic toys, kiss the characters in his books, and play with his baby penis until the cows come home.  Let’s hear it for this little boy.