Well, things have finally turned around and we are smooth sailing for now. Of course, that’s relative: smooth sailing. If I look at this from the outside, I see a chaotic, stressful mess but from my perspective, this has become our new normal. Sometimes I think about the removal of Drew’s left fixator and think how strange it will be to “back to normal” again. Don’t get me wrong, I’m looking forward to that day maybe more than even the day of his birth, but it will be strange to not have to think about adjustments, gauze, pin care, strut changes, pain medicine, awkward lifting, pain, etc. I can definitely say that I’m not going to miss these times. I will appreciate the end result and always value what this has done for us, but when this is over, it will be sayonara!
I’m so relieved to finally be looking forward as the past few weeks have been especially daunting with the fallout of Drew’s mal-rotation. Drew’s toes suffered the most. But, they have finally relaxed revealing terribly bruised toes and foot. His toes were so tight and untouchable that he went over a month without a thorough cleaning so – not to be gross – but dead skin is coming off by the layers. His toes were so tight together that it appears that they were permanently wet either from showers or sweating, or both, and the skin looks so…..moist. Drew finally moved his toes by himself for the first time since the surgery. I was beginning to worry that he had suffered nerve damage from either the surgery (which is possible. They always look for movement in the toes after surgery and it was a red flag when Drew couldn’t/wouldn’t) or the mal-rotation.
But, we’ve done a couple of weeks of adjustments to correct the mistake and his foot finally looks like it’s going the correct way. His foot is still discolored, but the best news is, Drew no longer experiences any pain in his toes, even during stretching during physical therapy! He has almost full range of motion now. Drew still has anxiety anytime you are close to his toes, but he soon relaxes when he remembers that things are better now.
Drew’s skin on his leg has started to get to that gross stage, which is normal. The body does weird things when foreign devices are introduced. He grew hair on his right leg and because he had so little contact with his actual skin, the skin cells weren’t removed as they are when we wear clothes, or lie in bed or on a couch, or the general friction we experience on our own skin that removes our dead skin as we go about our daily lives. The lower half of Drew’s leg is looking particularly desperate. His skin is shiny and extremely dry (we can’t put lotion all over because we can’t get it around his pins). The top layer of skin has begun to shrink and shrivel up leaving a very wrinkled and dry “shell” across his ankle. His ankle pin sites, though aren’t draining or bleeding, have developed dark black…..uuummm….they aren’t really scabs because they aren’t raised and can’t be removed….not sure how to describe it, his skin is just black surrounding the pins. And, Drew just LOVES to have these pins on his ankle “tickled” which I oblige him, but with the distorted face that I might display if I were placing my hand in a rancid bag of garbage. I just don’t see how the therapists can stand to touch dozens of kids’ crunchy, dry, flaky, puffy, scabbed skin all day. I wouldn’t be as disgusted if Drew vomited on me and of course, during diaper changes there have been some cross-contamination between the diaper and my fingers, which of course, I’m not excited about, but it’s Drew and it’s a hazard of changing diapers. However, if it were another kid that I didn’t create biologically, I may vomit myself. But, I can hardly stand to touch Drew’s skin on his leg. Blegh!!!
Speaking of therapy, Drew is doing very well. Especially with the absence of the toe pain. Drew is a lot more cooperative and enthusiastic. He still walks everyday, but it’s not his favorite. However, he’s made huge improvements. We had to up the speed of the treadmill because he was getting that good. Now, we don’t use the treadmill as much because he has started to rely too heavily on the harness and we want to make sure he can stand up straight. So, now, instead of using the treadmill and the harness, his therapist works with him standing in the middle of the floor and walking towards a mirror relying on his own leg strength to stand tall. He can’t quite stand unsupported yet, but he’s getting the idea of balance and you can see him adjust and try to work towards it. It’s still hard for him because the foot plate on his fixator leg makes that leg slightly longer than his right, but the important thing is that he builds his muscles up. We see him make improvements everyday.
Early last week, I was doing our daily routine of adjustments which has been a dreaded event each day as the pain has been unbearable. The lower portion of Drew’s fixator has pain-free and a breeze, but of course, we were relieving all of the pressure from turning his bones, muscles and tendons the wrong way so those were a blessing. But, his top ones have been a nightmare. Sometimes Drew would scream, and I mean, scream like you had touched him with a hot cattle prod. I absolutely dreaded adjustment time everyday. Anyway, early last week, I pulled out his schedule and started to do the adjustments when I noticed something kind of odd. Two of Drew’s struts were changing direction. If you watched our video of adjustments, you saw that we move the struts up and down according to a schedule and they’ve always just gone one direction – they get smaller or they get bigger. But, on this particular day, though I have been increasing the length of these two struts for so long, the schedule abruptly changed direction making them get smaller. This is extremely odd. This never happened on his right leg. And, Drew’s schedule has been wrong before so I was adamant I wasn’t going to adjust these struts until I could make sure they were correct. I was NOT doing anymore detriment to Drew’s leg.
Luckily, Drew was scheduled to see Dr. Paley at the end of the week so I made sure to ask about this new and unexpected development in his schedule. What he said made perfect sense. If you recall, Dr. Paley had mentioned that Drew’s knee bones were rubbing against each other so when we got the new schedule, they set it up so the struts would get longer thus pulling the bones away from each other and now that they were far enough apart, the schedule would have us decrease the length therefore replacing the bones in their proper place. This is to allow the extension to happen because if you think about it, if two bones are rubbing against each other and you are doing extension at the same time, you would be increasing the pressure and rubbing of the bones. Makes perfect sense! So, ever since, his adjustments have been a dream because they are relieving the pressure that was causing him so much pain. We’ll enjoy it until his bones get back to their proper spot at which point I assume the pain will resume.
I was relieved to have such a good appointment with the staff. I had been dreading this appointment since our last one, when it was discovered we were turning his foot the wrong way. My confidence was extremely shaken and I was fearful that we’d have another setback to discover at this appointment. I went through all of the scenarios and imagined all of my reactions to hearing that there had been another mistake. I couldn’t really come to a conclusion what my real reaction would be, but it wouldn’t have been pretty. But, luckily, I was being overly dramatic and things are going well and Drew’s leg is looking good.
Towards the end of the appointment, the physician assistant asked us when we were going to do the “ulnarization” of his arms (it’s a surgical procedure that does something with the tissue in each of the hands to correct the clubbed hands…Drew’s, along with most other kids with TAR, hands are “twisted” inwards due to the missing or shortened ulna which is called a club hand). You should have seen the look I had given this doctor. It was a “Are you $%^&ing kidding me? Are you INSANE?!?” kind of look. After we get Drew’s legs done, I’m going to need AT LEAST a year to even THINK about surgery (unless we are forced to when it comes to Drew’s heart.) Ugh!!! I just want to be normal again! No more pain, no more scars, no more anesthesia. I just want our family to go home to Kentucky and spend the next year – or two – decompressing. Besides, Drew is so functional with his hands: he can play video games just fine, he can feed himself, he can grasp objects easily. He does struggle with holding a writing utensil with enough force so he must use a marker when drawing so it will make a mark. But, I’m going to have to be really sure that any surgery on his arms will have tremendous benefit. I’m not going to do it for minor or even average improvements. It will have to be a vast difference.
As our schedule stands now, we have one more month of adjustments. By this time, on his right leg, I think his adjustment schedule had been extended at least once. It was extended twice, though I can’t remember how close we were to the end of the schedule when that happened. But, it hasn’t happened with his left leg yet. His leg isn’t even close to being straight or corrected yet, though there is some improvement. We see Dr. Paley every two weeks so we only have two more appointments before the end of Drew’s schedule. Once we are done with adjustments, we can come home for a bit. But, I don’t expect to be done at the end of January. I think it might be longer. We’ll see if they make any changes to his adjustment schedule. I kind of expected his leg to be a little straighter and his foot a little farther up by now, but perhaps I’m just anxious to get this over with. We’ll see.
Do you want to see a video of Drew’s therapy? I collected several clips of the various exercises that Drew does at therapy. He has an hour of therapy everyday, but I managed to consolidate short clips of the experience in a 19 minute video. Click here to watch.