Well, we just got in from our very long trip to West Palm Beach to see Dr. Paley. Our morning started off very early, too early. For the first time in over a week I was actually sleeping well. This darned cold has kept me miserable through the nights so naturally the one morning that I’m expected to wake up the earliest, I have the most restful sleep. Our morning started off at 6:05 am which is 5:05 Central so that counts, right? Well, a three-hour trip and several tolls later, we arrive at his office.
I somehow get stuck doing all of the paperwork. My legible writing has something to do with that. Drew played in the best waiting room we’ve ever waited in. They had a Wii, tons of toys, ride ons, and it was painted very well. As expected, Drew was instantly enamored. We were quickly called back for x-rays. As usual, Drew was not the list bit happy with this process. I have never understood why he hates x-rays so much. Maybe it’s the super large machine or the cold table, but you would think this boy was going to the shooting range. And, the entire time, Drew cried, “I don’t wanna fix my legs!” Ugh….so hard to hear! Am I being too selfish and narrow-minded in our search for walking? Is Drew really qualified to make this decision? Does Drew understand the implications?
Ever heard the Jerry Seinfeld routine about the 1st waiting room at a Doctor’s office and then the 2nd waiting room when they call you back to the exam room? Yeah, they call you back and you get that initial excitement that the day is going so fast and well. Well, if I ever thought that the waiting time in previous doctors’ exam rooms was ever long before, I will surely not think that future waiting times in future exam rooms will be long because we waited over THREE hours!!! This was a day that the doctor had new patient visits which are always pretty lengthy. Luckily, Drew had discovered a unique skateboard/surfboard type of ride-on toy so he entertained all of the waiting families a he raced up and down the halls.
Nathan and I were less thrilled with the wait time than Drew was as this waiting around was starting to take a toll on us. However, all exhaustion disappeared once Dr. Paley walked in.
Dr. Paley was all business in the examination portion of the ordeal. He twisted and turned Drew’s wrists, shoulders, joints and ankles, knees and hips in various directions murmuring measurements of flexion, angles and extension to his assistant. Drew did remarkably well as Dr. Paley twisted him like laffy taffy getting a feel for Drew’s condition. Drew didn’t seem to mind it at all as his legs and ankles were twisted in angels I’ve never seen before, but heaven forbid you take a friggin’ picture of his arm (a rather painless event.)
I’ve always known how rare TAR Syndrome is, but Dr. Paley described Drew as a one-in-a-million child due to the severity of his short arms and his lower extremity issues. It was pretty eye-opening,
Then Dr. Paley laid it all out on the table for us. With surgeries, Dr. Paley can make this boy walk. As nonchalantly as you would describe your ability to open a can of Pepsi, Dr. Paley would perform a variety of surgeries on Drew’s legs to fix the rotation and extension. It was all so mind-numbing that I am a little hazy on some details, but basically, there would be at least six surgeries within the next year or so. He would first fix the rotation in Drew’s legs, one at a time, to turn his femurs internally into the right position, and his lower extremities externally. This would get his legs facing the right way. Then, shortly afterwards he would repair his knees, again one at a time. Following that, he would provide the extension to each leg, one at a time, with a device that would gradually be straightened with a special bracing device involving pins and screws.
Drew would likely require a helmet because if he were elevated in a walking position and to fall, it would be quite an injury, understandably, with no way to brace his fall. But, limb lengthening would be an option for him, but not until at least eight years old. He seemed to think he could get a significant amount of lengthening in each arm. But, Dr. Paley’s biggest message was that he is very confident Drew would walk, almost as normal as you and me. He had no question, no doubt, no debate in his voice – it’s a fact.
My head is spinning and I was quite in shock. I still am. I am excited, skeptical, encouraged, anxious, sad, happy, confused all at the same time. The loudest question I have in my head, I think, is a surprising one to me: “Why do you want to change my baby?” To see Drew walk would be exciting, but a part of me is a little apprehensive about anybody changing him. I think Drew is perfect, gorgeous and I just love him for being him. He’s amazing and inspirational and his attitude, determination and uniqueness is endearing to everybody. Will he lose that?
He’s going to go through so much pain, daily therapy, medicine, poking and prodding and, he doesn’t even want to do it. Despite what he’s gone through in his life the last 3.5 years, he has remained the happiest and free spirit. What if he loses his smile and positive outlook? When we started seriously thinking about surgery, I didn’t think it was going to be this hard.
Multiple lengthy stays in West Palm Beach, at least three months at a time, would be required. And, we are looking at all of this taking place in about 1.5 years. He would also require the surgeries again between 12-16. Not to mention any surgeries he would require on his arms.
Dr. Paley is very confident and when I asked him about what makes him different from the FOUR other specialists I thought he had a pretty reasonable explanation: he sees kids with many different extremely rare congenital defects (including TAR) from all over the world and when you have a condition such as this, and being in the even rarer numbers of that condition, even the best and most qualified doctor see so few cases if any that the only knowledge the doctor has is from a book. Dr. Paley sees many people from all over the world so he’s had more first-hand experience with things like this (if you think about it, if Drew really is a 1 in a million, there are only 200-300 in the US and of those 200-300, how many of them are at the right age?) Dr. Paley has created numerous procedures himself.
So, its with excitement and a lot of anxiety that I say we’ll be scheduling surgery within the next few weeks. It’s been nearly four years and we are finally at the point of being on the verge of doing something. Wasn’t sure that we would get here, but here we are.