this is Drew’s perfect leg:
Monday. What a day. Mondays for the typical American include a series of clumsy missteps and annoying co-workers, but for me it was a long and exhausting day at Dr. Paley’s office. Drew has to see Dr. Paley, the surgeon twice a month to monitor and evaluate the progress of the correction and while I look forward to hearing Dr. Paley’s input, I don’t look forward to the day as a whole because by “whole” I mean it takes the WHOLE day and Monday was no exception.
I had been looking forward to this appointment for two weeks, since Drew’s last appointment with Dr. Paley (which I did not attend as I had work obligations) when Drew’s newest schedule of adjustments was slated to end this Monday and it was said that there was a small possibility of being able to return home to Kentucky. I tried to avoid thinking about it too much but it was inevitable. I was counting down the days since day 12. Will I get to come home? Who will I go visit first? Is it going to feel like I’ve moved to a new city again? My excitement grew more and more everyday. I was excited to finally hear my alarm go off on Monday morning and even though I had a strenuous work obligation for the first half of the day, I was ready to start the day and get it over with! Fortunately, my work obligation kept me distracted from thinking about the appointment so much and made time seem to go by faster. And I was giddy to be getting into the truck, backing off and leaving the apartment complex heading north.
I had spent a lot of energy trying to keep certain folks (you know who you are!) down on Earth and not get too excited about me coming home but I have to admit, I was very anxious. I was fearing my reaction if we didn’t get the release to go home. I would be crushed!
Upon pulling into the parking lot, I was astonished how abnormally packed the parking lot was. Having no parking spaces in the usual lot on the side of the Paley Institute, cars had lined up down the curb clear down the entire hospital complex. Drew’s physical therapy is always scheduled first thing in the morning when the Institute is first opening so I figured this was normal for a hospital this size in the middle of the afternoon. Little did I know that this was the first sign to the day laying ahead of me. I walked in and rounded the corner and was flabbergasted to see a crowd of people – not just a group, I’m talking a CROWD – sitting on the floor against the walls. It looked like the entrance to a Justin Bieber concert (I’ve never been to a Justin Bieber concert, I just assume that the lines going in are pretty phenomenal.) I sign in at the desk, bewildered by the noise level and the dozens and dozens and dozens of people hanging out and the receptionist asks, “Have you had lunch?” Me: “uuuhhhh….no.” Receptionist: “OK, after x-ray. You’ll want to go. You’re going to be here for a while.” Naturally, on the most anticipated appointment, the day seems like it’s going to be longer than usual. It was 2:30 when we arrived as well as the scheduled time of our appointment.
3:20 (waiting 50 minutes in waiting room): Receive consent forms for x-ray.
3:45 (waiting 1 hour 15 minutes in waiting room): X-ray completed
4:00 (waiting 1.5 hours in waiting room): ate a nasty salad at the cafeteria (seriously, how do you mess up a salad?) and ordered Drew a cheese pizza.
4:20 (waiting 1 hour 50 minutes in waiting room): ate the last slice of Drew’s pizza. It was very good. Naturally.
5:54 (waiting 3.5 hours in waiting room): Drew falls asleep as I tickle his foot.
7:10 (waiting 4.5 hours in waiting room): I wake Drew up. He’s screaming. Nobody is happy.
8:07 (waiting 5 hours 40 minutes in waiting room): Drew gets called back to Dr. Paley’s exam room.
8:51 (waiting 6 hours 21 minutes for this moment): Dr. Paley examines Drew.
9:40 (7 hours and 10 minutes total time spent at Paley’s office): Re-enter truck and return to the apartment
This day was only longer by about 2 hours more than our previous record spent at Dr. Paley’s office. Because Drew took such a long nap so late in the day, I let him step up for a little bit to watch TV and then it was off to bed. Normally, I lay there until he’s asleep then get up and watch my trashy TV shows, but this time, I just fell asleep right there next to him.
So, what are the results of Dr. Paley’s examination? Does Drew have anymore adjustments? Do we get to come home? Well, Drew’s leg is perfectly corrected and extended according to Dr. Paley’s expert eye. Yay!! No more adjustments are needed. Double yay!! Dr. Paley wants to have a standing plate installed on Drew’s fixator so he can stand. Say whuh? Now that Drew’s leg is extended and properly aligned, Drew may now commence with weight-bearing on his leg. And, physical therapy will work with him to get him to stand up. Dreams come crashing down. But, lo and behold, Drew only needs a few days of therapy to demonstrate to us what is needed and we can go home. So, I don’t get to come home this week, but I’m headin’ back to my old Kentucky home on Monday evening!! I expect a lot of hugs and two words for my girls: dancing and alcohol.
Just when I think I know what to expect, I get thrown another curveball. During the same appointment with Dr. Paley, I learned for the first time that after Drew’s fixators are taken off and a cast is placed for two weeks and then removed, Drew will have to wear braces on his legs. Whoa, wait a minute! Braces?!? When did this happen? How long must Drew wear braces? For YEARS according to Dr. Paley, for as long as growth takes place. Confused and shocked. I don’t know if I’m not asking the right questions, or if Drew’s progress isn’t going as well as expected, or if I somehow lost a brochure, but I just never seem to have a complete understanding of Drew’s surgeries and outcome. When Drew had his tubes put in or even during his open heart surgery, the doctors explained to me in painstaking detail – even though I didn’t understand what 80% of it meant – what was being done. How could I not know that Drew would require braces for years – YEARS – after the fixator?
My first gut reaction was, “Oh god, we have made a major mistake here. We have done this surgery, it’s too late to go back now, and Drew’s legs will no longer help him with his hands and he’ll be wearing restrictive braces.” Dr. Paley said he’ll be walking with braces, but this just adds to my questions about what “walking” means. Forgive me for sounding like Bill Clinton and questioning the “definition of sex” here, but I’ve asked multiple times and in multiple ways about Drew’s ability to walk. With a cane? With a limp? Short distances only? Playing sports? I just haven’t gotten a clear answer. I didn’t want to think that Dr. Paley was being evasive because he is a leader and one of, if not the most, sought-after specialists in limb lengthening and deformity correction in the world. It’s difficult to question or doubt someone with his resume. He’s helped thousands of people to walk for the first time. And, sometimes you just have to have faith in something and he is someone to have faith in. But dammit, do our definitions of walking match? I guess we’ll have to wait and see. Even though I deserve to know, I would feel like a jackass holding Dr. Paley hostage and interrogating him while other patients are going on waiting hour 8 and 9. And, anyway, the braces will come off when growth stops supposedly. We’ll just wait and see what surprises us next.
Anyway. The next morning Drew’s foot plate, a ring with the sole of shoe bolted into it which is then bolted to a ring on Drew’s fixator, is installed. Drew wasn’t thrilled at first but quickly got excited about the idea and cheered the doctor on: “Let’s do this! Is it done yet?” The second the doctor turned the last bolt its last turn, Drew said, “I want to stand now!” Unsure if I should do this without the proper experts, I cautiously stood him up. How much weight is too much weight on his foot? Will it hurt him? He stood, he looked down at his foot and smiled. I was so excited! Other patients started to come in for their own strut changes, so we quickly escaped. As I was walking down the hall towards the exit, we crossed paths with a mother whose daughter always undergoes therapy right next to us each day and Drew recognized her and had me stand him up so he could show her. Big cheesing smile and everything. He asked me to stand him up as we got to the truck and enjoying his enthusiasm and obviously enjoying this huge accomplishment after a rough 10 weeks, I stood him up. And have each time he’s asked me to. Even during my work day, if I leave my office to get a drink, he has on occasion asked me to stand him up and he told his babysitter, “I can’t wait until mama gets off of work so she can stand me up!”
He is so excited about standing up for the first time. He says, about his standing plate, “Mama, I love this thing!” Even that night, he said, “mama, I want to walk with this thing.” So, he used his left foot, which his leg is not able to support his weight because it’s bent a such an angle that he can’t place both feet on the floor simultaneously, to push against my shin to bring his fixator leg forward making for a semi-walk. Of course, I have to hold him up straight and maintain his balance for him, but he’s able to tolerate weight on his foot well. We are going to have to really work on his stretches because he doesn’t have a lot of flexibility so his fixator leg goes behind him in the standard walking formation. But, just to see him stand up and be so excited has made me immensely proud and made the 10 weeks worth it. If merely standing on one fixator leg is worth all of this drama, I can’t even comprehend how I’m going to react to him walking for real.
So, we’ll be coming home next week. Drew is so excited to see all of his friends. I’m excited to see everybody. I know everybody is excited to see Drew (and me too.) Look forward to seeing everybody!