Sympathy Pain

Tony is going to get a new AFO fitted Wednesday. Sarah took him to the ortho last week. They took x-rays and examined him.

“Can he run?” the doctor asked as Tony was climbing and running all over the place. I guess that’s a good sign.

His x-rays showed some straightening of the bone, but with his recent growth spurts, we are seeing more length difference now. He’s also figured out that he can walk on his tip toe on the good leg and not bend his knee on the lucky leg to walk. Makes him look like Peter Boyle from Young Frankenstein.

“Your biggest job,” he told Sarah, “is convincing everyone else you are doing the right thing. Everyone wants immediate action…surgery, casting, etc…but we are on the right path for him. The new AFO will be smaller than the first, just to keep him from rolling over on his ankle. We will have to get shoes with lifts for that leg. It will soon have to be an external lift once the discrepancy gets more pronounced. But we are on the right path.”

The “External Lift” does make me nervous. The doc says the new ones are really well made and help disguise the fact that they are lifts. I just have the image of…Peter Boyle again…and his big clodhoppers.

But, Tony is otherwise healthy and very happy (now that his molars have come in). So we are very blessed. I feel like I have to put that caveat on every post I write about his leg. I just don’t look forward to everything he is going to have to go through and put up with in order to wait until the right time to fix it…then who knows what long lasting issues he might have after the surgery…but he otherwise healthy.

The boys and I had an all guy night. Jack was dropped of at work, and I picked Tony up about 5:30. We went to Target then on to Chik-fil-a. Why chik-fil-a? Well, other than their delicious chicken sandwiches, they have a play fort. One of Jack’s favorite things in the world.

Jack finished his dinner, and tried to pretend that he didn’t want to hit the playfort. He’s 9 now, you know. but the primal instict was to great.
After seeing his brother getting crazy on the play for, Tony had to try…Can you tell he has bowing of the tibia? He can’t.

I realized I haven’t posted much about Tony’s leg. Posteromedial bowing of the tibia. Broke leg. It’s because we don’t think of it much. It’s just not a thing right now. He isn’t slowed down by it. There is very little we can do right now. He runs everywhere. He climbs everything. He has 2 speeds…fast and “crap, where’d he go?.” Sometimes it looks like his forehead is a relief map of the Alps from all the beatings falls.

He’s outgrown his first AFO. He has an orthopedic doctor’s appointment in June, so we are waiting until that to decide if he needs another AFO or if we will just have high top shoes. His doctor was actually a little hesitant to use the brace in the first place, so why get him fitted for another until the doctor gives his next opinion.

I’ve met many parents with children having the same or similar leg issue. It seems doctors deal with this is slightly different ways. Ours…”Let him grow…maybe no brace…lifts in shoe…operate when older.” Another…”Brace, brace, brace!…operate when older.” Yet another…”Operate now…brace…operate later.” What do you do? I’ve hit a point where I have read enough to realize the outcome is always always the same. Operate when older, and little or no issue after that. The path there seems to differ, but the destination is the same.

I guess for now, we trust his doctor…and chase that baby all the time…and make up new excuses for all the bruises on his forehead.

I received this email from Lisa Hooks. Her daughter is 10 and has Posteromedial Bowing of the Tibia. I ask her if I could share this, so here it is.

My daughter is now ten, from ages 1 to 3 she went through three different braces. The first one she could take off faster than I could put on but when she was standing, it served its purpose. The next brace worked pretty well. She was starting to get around really good and it did not seem to bother her. The third brace, never really worked. Because of the bend and the different design, the brace seemed to cut into her leg. She hated it. After that we went through a series of lifts. They just made her clumsy. She had learned to adjust better on her own. I found if I had her in high top shoes it gave that ankle some support and kept her from rolling over onto the side of her leg.

One thing is for sure is that there has been nothing certain. It went from, “it does no good to brace this condition” to, “oh my she is standing on the side of her leg she needs a brace”, to “surgery by the time she is two because the bend did not straighten enough” to, “well as long as she is doing ok let’s wait”. And now she is 10. She has always adjusted well on her own and I have never stopped her from doing anything. She took dance when she was little and has been in gymnastics for the past 5 years. Yes, she has some difficulties and, recently, we took her from full gymnastics to just tumbling because the balance beam was not working out. She was just too uneven. But even now, she can’t run as fast as she use to and that is making flips and cartwheels very difficult, but she refuses to stop, so I let her go.

I don’t know where you live or if it said I don’t remember, but she has been going to UNC Hospitals in Chapel Hill, NC since birth and two times I have taken her for a second opinion at Duke University. They have different opinions on when the surgery should take place, UNC says still wait two more years at least and Duke said 5cm was a large discrepancy and they would do something now, even if it meant having to do it twice. I only recently learned of the Shiners’ Hospital for Children and that they may actually be able to help her and in an environment that would hopefully be more calming for her. I am still kind of spinning around but I just want to do the best thing and not have missed the boat and have other problems begin to occur.

I hope your journey goes smooth, it is a life long journey, we were told that early on. And I know we are lucky to not have had anything more serious to deal with but that doesn’t make me any less dedicated to doing the very best for her, whatever that may turn out to be. Again, my best advice would be to let him do whatever he wants. My daughter has always been the best judge of her limitations. Just because the Dr. may have said to do it, if it didn’t work for her, we told him because, apparently, there is no rule on how to treat this condition. Great to have made contact with you.

I took Tony to the orthopedic doctor yesterday. It’s always strange to walk into an office with folks who are there for mostly broken bones…with a baby. They look at you and you can see it on some of the faces…

“I bet he beats that child. Why else would he be here.” So I smack him around a little just to make them feel like they are intuitive. I kid…really.

He walked all over the waiting room. He’d pick up books and magazines and redistribute them to whoever he felt needed a book. It was very cute…for the first 15 minutes. We waited for about 30 minutes to see the doctor. Then it was a few more minutes of Tony examining the examining room. He really likes to crawl under the table and hide his shoes.

The doctor came in and looked at his leg. He watched him walk around a bit. Said it looks good…straighter…and to come back in 6 months for an x-ray. He said that the bones will grow in the same proportion they are in now, so looking at the difference in the two legs now, he expects about a 3 inch difference when Tony hits puberty years. That’s when, unless something drastic changes, we will look at the options of operating to lengthen the leg. Ugh.

He then went to the pediatric doctor with Sarah…and discovered mom’s nipples all over again…in the waiting room. He tried to play “Tune in Tokyo” right there in front of the other patients. I think my waiting room visit was more pleasant…but maybe not.

With the new orthotic doing well…I guess…I’ve been reading more on bowing of the tibia. I have gotten a few responses from parents around the country reflecting our experience. It seems the course of action we are on is kinda the standard. I did receive one from a mom, Katie, who’s little one is older than Tony:

Yes, the doctors here in Sioux Falls told us that his leg would straighten itself out on its own. What happened was that his foot did come down on its own. It came down a lot from when he was born. At first his foot was pushed all the way up and indented his leg. However the angle of the bow never changed.. My theory is, he used his legs a lot to kick and push plus he had physical therapy once a week so the muscles and tendons strengthened but the bones never moved.

He had a brace on his leg from day three. Imagine walking out of the hospital with a new born that already has a cast. Thank God the people in the Walmart here know me or I’m sure they would have thought I abused him. Every time we went out in public someone stopped us to ask what happened.

At about nine months there was a new specialist in town and he stated that Tanner’s leg would never be straight, and the bracing was a waste of time and money. I of course had a major panic attack (which is what i seem to do best in stressful situations. no one likes a calm mother anyways right?), then went home to do some research of my own.

My father is a Shriner and I knew that they had specialty hospitals for burns and amputees but I was not quite sure if Tanner would be right for them. When you go to a Shrine hospital you need to have a sponsor so that was the first step in getting our now third opinion. My father sponsored us and we were on our way up there a month later.

They took x-rays and looked at it almost as though it was not as big of a deal as what it felt, which was sort of calming. It helped that there were a lot of kids that had disabilities roaming about the hospital and the play area. It was almost like home. We felt as though we belonged the moment we walked in. Tanner played exceptionally well with the other kids and everyone was so accepting.. They sent us on our way with another brace and told us they wanted to wait a year (until he had walked on it for some time) to decide what the next step was.

The next year, we went back and they took more x-rays. This time the look on their faces were not the same. They told us that he was for sure going to need surgery when he is big enough.(Between 6 and 8 years old) Fortunately that is in the beginning of his school career so when he is in high school he can play sports if he wants. I cried at this appt too. Imagine that right? Oh and I forgot to tell you my Doctor has a little bit of a stutter so when I cry she stutters more. Its sort of a funny little mess.

Last year, our concerns were that his leg was starting to be A LOT shorter than his other leg and he was starting to limp harder on it. We thought maybe it would affect his hips and his spine, we were also worried that his leg was getting longer and with the bow the way it was that it might snap in half if he jumps on it wrong. They assured us that he was going to be ok and that was not something we had to worry about just yet. Well we made it through another year without problems.

This year, Tanner grew a lot.

We went up two weeks ago and they took x-rays. Everything seems to be the same except his attitude and how smart he is getting. He knows now that he is different from the other kids at daycare, and that his bones are bent. He also knows that they can be fixed. When we were walking out of our appt this time he saw a child that didn’t have leg and asked me if the doctors were going to have to cut his leg off. That was a long four hour drive with a lot of explaining. When we finally got home he knew every detail of what happened, and on Monday when he got back to daycare he could explain it in his own terms.

While we were up there this time they confiscated his new Jordans to put a lift in. When he wears the lift he stands an inch and a half taller because he isn’t leaning anymore. His hips are even so he doesn’t complain about his back hurting, and today we go up there again to pick up his new brace.

Oh I forgot to tell you the physical therapists theory on going without the brace: He compared Tanner’s leg to a tree root. Once the root hits the side of the house (When Tanner started walking), it was not going to grow anymore straighter than what it is, it will turn and start growing in another direction where it has room to move. Basically, with Tanner putting pressure on his foot everyday without something to hold it straight, it wouldn’t make any improvements but to continue to grow to the side.

http://www.shrinershq.org/

That is the link to the Shriner’s home page if you want another opinion from them. All you need is a sponsor which isn’t that hard if you know a Shriner already, but if you don’t, I do. And they are more than happy to help any child in need. It is free all the way around. If you have to travel they will provide a ride or if you want to drive (which is what we like to do) they reimburse for the gas. If you need to stay in a hotel room they pay for that too. Everything is free. Aside from the food you eat and any shopping you may do on the way..

I’m glad we went ahead and pushed for the brace. He seems to walk a lot better with it on…though it is really loud when he is crawling with it. Clomp!…slide…Clomp! It’s hard to be a stealthy Binja Pirate when that’s happening…

“He’ll be fine” I said, “and if not, we are young, we can make another.”

I have this gift for saying just the right thing to ease my wife’s fears. Tony started his new Day Care yesterday. Admittedly, I was worried just as much as Sarah. Mostly ungrounded, but anxious none the less. I worried if he would be confused or afraid. I worried that they wouldn’t click with him the way some of the teachers had at the previous school. I worried he would be ignored of forgotten because he’s such a laid back baby…like what happened at the previous school.

I took him, as I normally do. At the same time…right after “Curious George” goes off. I had tons of baby stuff…diapers, wipes, clothes, bibs, food…and the Binja. We arrived, and I introduced myself and Tony…and his AFO. The girl, Tiffany, seemed a little apprehensive about the brace. But after I demonstrated how to put it on him, and he demonstrated how cool his is about the whole thing, she was fine. A few more pleasantries…and a trip back to the house to get something I left there…and he was on his own.

I worried all day (don’t tell Sarah). I wanted to call, but as a former teacher, I knew I had to trust them…and be ready to knock heads if they screwed up.

I got home, and the first thing I heard was that little happy shrill. All the worry went away. He had had a great day, and the teachers were already in love with him. That’s my boy.

Tony got his AFO (Ankle Foot Orthotic) yesterday for his Posteromedial Bowing of the Tibia. It seemed to fit pretty well, and, in his usual Tony way, he seemed to take it in stride…no pun intended. We have to go back in 3 weeks to get it looked at, make sure it is fitting properly, see if it’s rubbing, etc. Then every three months. There is a lift in it to help even up leg length.

The nurse called it his magic leg. We like the term “Bionic”. We are trying to give this a positive as possible spin, in front of him. Honestly, it broke my heart yesterday. I’ve always been sensitive to the “different”, being four eyes and all. I know this is for the better, but I just hate it for him. So Sarah is right when she says “We will be nothing but positive about it around him.” It still just kicked me in the heart.

He seems to be doing fine. I gave the daycare instructions this morning, but had to tell them we didn’t know how he would act today. He only wore in about an hour yesterday, so who knows what they will get from him today. It’s really his first day wearing shoes, much less an AFO. Before today, because of his leg/ankle, he couldn’t wear shoes, and sock would fare well at all. So he was shoeless Tony.

I know we are blessed. I have 2 amazing sons, both who are healthy and good natured. I just hate for them to go through things like this…glasses/AFO…It just tugs on my heart. What doesn’t kill you makes you stronger…or a target.

Yesterday was hard. We had been anticipating Tony’s return visit to the pediatric orthopedists. He has begun pulling up and scoots around pretty fast. This was a milestone of sorts for the next step regarding his leg/foot.

So Sarah and I took him to the doctor. The x-ray of his leg looks better. The bones have straightened out noticeably. We voiced our concern with him having a dominate side and it hindering his development…the doctor said not to worry. We also delved into the fact that he can’t wear a sock, must less a shoe, and that’s a milestone for moving up in day care. His heel isn’t in the normal position, so shoe and socks don’t stay on. So it was decided to fit him for an AFO…ankle foot orthotic. This will help immobilize the foot in the correct angel and allow him to wear a show over it.

But, Bryan, how do they fit a 9 moth old with such a custom device?

They cast him. The use material used to cast a broken bone, wrap his leg and foot with it, let it dry, and then cut it off. It was hard…mostly for Sarah and me…to go through that. He was great…but it really is hard to see your son begin a process that will affect him for years. Knowing he will have a brace, or at least a lift in his shoe, until he’s old enough for surgery…when they even out the length of the legs…it makes my stomach sink.

The doctor even mentioned that stigma of being “the kid with a lift” while we were there. The AFO will have a ¼ inch lift in it. I’m guessing, eventually, as he grows, he will have a pretty significant and noticeable difference in leg length. Then we have to decide when the best time to do the operation will be. The longer we wait the better chance for only having to put him through it once. However, the longer we wait, the longer he lives with this “difference”.

Now, I know we are blessed. Aside from this we have an extremely healthy and happy little boy. It was brought home while we were leaving the fitting office. A young boy, in a paraplegic motorized wheel chair, was in the waiting room with his mother. Sarah and I both noticed this. We both, at that moment, counted our blessing.

But it’s still hard.

Tony is a scooting fool. He is not really crawling on his knees yet, but man he can make tracks in the military crawl. He especially likes the dogs water dish. It’s been dumped a couple times.

He’s standing pretty well if helped and has pulled up a few times. It’s kinda cool to see him climbing up his brother or one of the dogs.

Which brings us back to the lucky foot. He has an appointment with the pediatric orthopedist in September. We’ll see then what straightening his bones have done. It’s kind of scary…ok, it’s really scary. We have this light hearted approach around the house about it, but it really does worry us for him. I had glasses, and was about the only kid in my class who wore them. I thought that was bad. But Tony will have, at the very best, a limp. I really don’t know what he’s in for…but I don’t think it’s going to be as easy as I would like it to be…or have been trying to reassure Sarah that it will be. I guess I don’t want us to stress about the what ifs, until we know what those are.

So I leave you with an example of the lightheartedness. Sarah was with friends discussing the Olympics and what Tony could compete in to make us famous. Swimming was the conclusion.

“I mean, his foot is kinda flipper like already.”

“But he’d have to do synchronized, because with that foot, he’d swim in circles.”

I took Tony and his bent up foot self to the Doctor today. We got there around 8:45…appointment at 9:00 saw the doctor at 9:20. Tony was none too happy about the wait…but then fell asleep about 3 minutes before the doc rolled in. He was smiley happy baby then. The doctor said his foot was looking fine, gave me the same info he gave me the first visit, said come back in 6 month, and charged me.

He did say if Tony wasn’t standing or walking on that foot correctly, we may have to put it in a brace to keep it in the correct orientation.

Now Tony has his own idea of what is fun, so when the doctor was manipulating his foot and stretching it out, Tony was guffawing. It was awesome. The doctor thought he was pretty darn cute. I like it that my baby made the doctor want to spend a little time playing with him, instead of running off to the next bent up body part. I laugh in doctors offices and hospitals myself. He comes by it naturally.

I know I kid a lot about his foot. I am worried that he’ll go through some issues, both physical and mental, because of this. But, I have seen what others are going through with their little one, rather it be behavioral or health issues, and we are truly blessed. Tony is an amazing little guy. I hope that his parents attitude about his foot goes along way in the healing…either that or it will damage him for life and our flesh will burn in the lowest level of hell, while we scream for a moment’s reprive, for all eternity. Well…as long as their are naps, that’s ok.

Tony went to the pediatrician last week. 2 month check up. I use the same group and had to go in for a injury. Fell and sprained my wrist. Thanks for asking. Tony’s doctor said he seemed to be doing great…and his foot looked much better…

I really don’t think about it much. It use to really bother me. I use to worry about how he Now it’s just part of him. We stretch his foot regularly. I do it anytime I feed him or bath him. Just simple stretching. He seems to be holding the foot more normally now. I told Sarah some of it because he had chunky baby legs now, and it can’t flip back like it used too…I think it offended her mommy senses. Belly time also seems to be straightening it. He is pushing off on it more than he use to. It seems to be letting him manage it more.

We take him back to the orthopedic doctor on the 14th. It does look better, but the bone is still severely bowed. If nothing changed with it, there would be no way he could walk on it. I’m curious to hear what the doc has to say.

Until then, we will just keep playing with that lucky foot and looking forward to the day he plays Tiny Tim…What? not PC? well, he’s my son…so there. Actually, it is easier for me to laugh about it than to worry. We trust his doctor, and that really all we can do.

Not a cowgirl name. It’s a description of our day…

We went to the pediatric orthopedist. He was very optimistic about Tony’s leg. He diagnosed it as “Posteromedial Bowing of the Tibia”…um yeah. It is believed to be caused by the crossing of one leg over the other, cause one to actually form around the other, deforming the bones in one leg. He believes that with stretching exercises, the bones will straighten themselves. If their is not significant straightening before he begins to try to walk, the doctor will begin more aggressive treatment. However, because he will continue growing over the next 2 decades of his life, there is really no reason to get too aggressive until his teen years. He believes the worse case will be that leg being shorter by a few inches than the other. This would need a lengthening in his teens. He might need nothing more than time.

So there’s the straight leg part, on to the McBad Boob. Sarah has an infected milk duct. Doesn’t that seem like a crappy trick of nature? Sure, you can feed your child, and that’s the best method for him, but it’s going to hurt like passing a stone through your nipple and make you freakin sick. She woke up from a nap with a 101 degree temperature, shivering uncontrollably. So we called the OB/GYN and they called in some antibiotic. She’s taken a couple really hot showers and tried the hot compress. She can’t feed Tony though. The pain almost makes her pass out. So she’s been pumping to try to clear the duct up and provide him some milk. I know she feels bad about not being able to feed him directly, but passing out on him would suck.

So, that was a glimpse at a portion of our day. We won’t go into the broken radiator hose on my car, tires being low on the good car, getting new glasses, Jack asking if Santa Claus is real, or my oldest cat beginning to look like she needs medical assistance. Good night America.

Posteromedial Bowing of the Tibia, infected milk duct

So I am an evil person. I have a tendency to find humor in the misfortune of others. Schadenfreude. It will always come back.

When I first started working at my current place of employment, we were at a different location. We could look out our loading dock door and see the parking lot of the establishment next door. We’d have those times in the day were we would stand at the counter and watch the world outside.

Now, my partner and I had a tendency to have the humor of a prepubescent boy. We would tell fart jokes and such. Man, a good sexual innuendo would cause hours of amusement. Not that I’m always proud of this, but it’s how we are wired. And again, this was years ago, and maybe I’ve matured slightly…maybe.

To the point, next door, there was a woman who had a bone deformity in her arm. It actually curved about halfway between the elbo and the wrist. We…uh, by we I mean I…came up with a not to attractive nick name for her…”Ol reach around”.

So, please enjoy the karmatic smack down that is the x-ray of my son’s leg. We call it his lucky foot. You can see a pic if you follow the link to my Flickr page. We go to a specialist tomorrow to see what we need to do to start the straightening process. Lesson learned, great Karma…you bitch.

baby, foot deformity