Off with the cast!

After six long weeks, Owen got his spica cast taken off today! I don't know who was more thrilled, him or me. He was glad to be able to scratch some very itchy skin and the first thing he wanted to do was take a bath. I am so happy to see him without the cast. Also, he is about 12 ponds lighter.

His X-rays looked great. He has done a lot of healing in the past 6 weeks. The flex nails in his femur should be enough reinforcement to prevent another break. However, since we haven't been able to count on what *should* happen, he is back in his abduction brace and non-weight baring for another three weeks. The great thing about this brace is that it helps to support his leg but can be taken off for bathing or swimming. The boy will get to enjoy the rest of his summer!

Just after the cast came off.

Another break

On May 15 Owen had the plate removed from his femur. He was in a brace and using his walker. On May 20 he took a misstep at school and broke his femur again. I got a call from the school and rushed to get there. He was laying on a bench crying with his leg at an angle such that I had little doubt that it was broken. I took him to urgent care for an X-ray to confirm my fear. Sure enough, his femur had broken right at one of the screw holes from the plate. I called the orthopedist and we headed to meet her at her office. That night he had emergency surgery to place two flexible nails inside of his femur. He is also in a half spica cast, which will be removed on Friday. We are really counting on those nails! He will also be going back into his brace. 

As always, he has been such a trooper. He never complains. He can't walk, play, swim etc. It is hot here in NC and surely even hotter in a spica cast. Still, he is taking it all so well. I am so in awe of his bravery and am so proud of him.

Orthopedic Check-up

This morning Owen had a check up with Dr. Casey after four weeks. He has been getting around very well with his walker so I was very confident. Still, because of the number of times that I have been no-so-pleasantly surprised during an appointment, I couldn't help but be a touch nervous. Luckily everything looked wonderful and the doctor was thrilled with his progress. There was a great deal of increased healing. The bone that was already looking good a month ago had calcified even more. The few parts that hadn't shown much calcification yet looked quite a bit better. As she has said before, the doctor referred to Owen as a "super healer". He has graduated from physical therapy, which was perhaps the biggest surprise to me. He is now WBAT, or weight bearing as tolerated. As is the case with most almost-five-year-old boys, Owen is certainly pushing the envelope. His leg doesn't hurt him anymore, and he is certainly on the move! He is certainly pushing it with his new weight-bearing rules. Dr. Casey obviously has a plan for this. We have told Owen one set of rules, and when he pushes a bit I let him push a certain amount and pretend not to notice. He can walk a bit without his walker, but I certainly don't cheer him on. That would cause him to push further. She feels that when we go back in another four weeks it will be sans walker. I predict that it will happen within two weeks. 

I am so thrilled that Owen is doing so well, and I am beyond proud of my little man and how hard he has worked to get to this point.

Such a happy day!

Back from my Hiatis

If you are a regular reader here at the Hive, you've noticed that I have been absent lately. Things have been crazy here for the past several months. This is a long story short type of situation. Owen had surgery on November 29 to begin the lengthening of his right femur. In case you forgot, he was born with a leg length discrepancy. Specifically, a congenital short femur. The orthopedist performed an osteotomy and placed an external fixation device for the purpose of lengthening. There was a tool that looked a lot like an allen wrench, which I had to use to turn a part on the device four times each day. Each turn lengthened his femur by 1/4 mm. That means by the end of the day, his femur had been lengthened by 1 mm. This went on for 42 days, and we gained 4.2 cm of length. Unfortunately, about 3 weeks before she had planned to remove the fixation device, Owen got a bone infection. It had to be removed early. During that surgery, once the device was removed his femur broke. This was not an anticipated complication, but his hip flexor muscle was so tight that it slammed down and broke the bone. About four days after surgery when we went for his post-op appointment, the x-ray showed that the fracture of his femur had been seriously displaced. Emergency surgery was scheduled for a few days later. The surgeon fixed that break, set it and place a femoral plate and interlocking screws. Again, a few days later something was clearly wrong. Owen, who is such a tough guy and has hardly complained at all through everything, became very uncomfortable and experienced pain each time I moved him. As it turned out, his leg broke again above the existing plate. Another emergency surgery. This time the bone was harder to set and she had to sacrifice a centimeter of the length that we had gotten. She had to put in a much larger plate and 12 interlocking screws for internal fixation. She also released several of his tendons to relieve some of the tightness. He was then outfitted with a half-Spica cast, which he sported for 6 weeks. After those four surgeries and the time in the cast, he made a lot of progress and there was a lot of bone growth. After not having been able to walk since before Easter, he finally graduated back to his walker on June 14. He is doing GREAT! He gets around amazingly well on his walker. His spirit is truly amazing and he is such a trooper! He has taught me so much, and made me so much stronger in the process.

We see the orthopedist tomorrow, which will be the six week mark since the cast came off. I am both excited and anxious to see the x-rays and hear what the next steps will be. I am so proud of my sweet little man and how well he has weathered this storm.

A very quick Ortho update

I just had a nice talk with a friend. Actually nice talks with 3 friends today. I've said it at least 20 times today about Owen's Orthopedic appointment... "I don't want to talk about it." And I still don't. I also know that a lot of people are thinking about and praying for our family and who really care about Owen. Those people deserve to know the gist of what happened. I apologize that all I can give you right now is the gist. This has bowled me over, left me sad, confused and hurting. Oh and very angry, with no one to aim that anger at.

Owen sees his Orthopedic surgeon once a year for follow ups for his congenital short femur. They take x-ray, measure his body as well as his bones on the x-rays. Last year his femur was about 2 1/2 cm short and his tibia was maybe 1 cm short. The tibia has never ever been a concern. His doctor had every reason to believe that it would be left alone. Wrong.

Three main things happened today, all of which are very upsetting to me as his mother. 1.) His tibia is now 2 cm short and will also have to be lengthened. Twice. 2.) His doctor is considering doing the surgeries at different times than she originally though. Instead of 8ish and 14ish, she is now considering 5ish and 9ish. I can't even talk about all of the reasons that a leg lengthening for my 5 year old makes me cringe and want to be sick. Last year, it was something that was being done by some surgeons in the orthopedic community, but his doctor wasn't convinced. Today she told me she has done it quite a bit and Owen may be a candidate for early lengthening. 3.) Owen was born without an ACL in his left leg. As Owen's body has grown and developed, his orthopedist has been able to gain more and more information from his body. Today was the first time she knew that both bones would be lengthened, and that the weakness in his knee could be an issue with that. She will have to worry about subluxation of his knee.

I'm sorry, that is all I can manage for now. Intellectually I can process these things and have very rational thoughts. Emotionally I am a wreck. One of the things I hear a lot is "it could be worse". Do people think I don't know that? Guess what, this is MY worst, OUR worst. Please try to understand that.

Two Year Orthopedist Update

Last week Owen had his 2 year-old follow-up with his orthopedic surgeon. The appointments start out with x-rays that require Owen to stand flat footed (with his left leg on a block, making it even with his right leg) with his back against a board containing the x-ray film. The board also has sort of a height chart to make it easier to measure his bones. As with any x-ray, he can't move. Reminder: he is two so he moves a lot, plus he HATES these x-rays so it always takes several attempts. Oh yes, the most fun part is that I can only hold him still in a very specific way. I can hold onto his upper body (sort of pinning him against the back board) and I can put my hand on his knee. I am not allowed to touch any other part of his lower body. Doing so will obstruct the view of his other bones and joints (hips, femur, tibia) which are very important for the doctor to see.

To make a long story short, the appointment was pretty much status quo. Allow me to share the "news" with you utilizing bullet points or this could turn into a novel.

-Hips look good. Both in the socket, growing the way they should be and providing an excellent foundation for Owen's lower extremities, which is vital.

-No need for a heel lift for his left shoe. He is getting around fine, just like any "typical" kid and his compensation for the length discrepancy is not doing any harm to his back, hips, muscles, etc.

-His left tibia is still just a tiny bit short. That discrepancy seems to have stayed about the same and the doctor still does not expect to have to lengthen his tibia.

-Owen's left femur continues to grow and is proportionately shorter than the right femur, which is what makes his left leg shorter. We have known since very early on in this process that the discrepancy in his two legs would increase, but that the discrepancy should remain proportional. His left foot hits at about his right ankle. According to the measurements at last week's appointment, the discrepancy is now just a bit less than 4.5 cm. Last year it was 3.5 cm. I knew this would be the case. I was prepared as much as I could have been to expect a larger difference. That doesn't mean it made me happy. I had hope that maybe it would slow down and his left leg would catch up a bit. The doctor never gave me any reason to hope for that, but look at everything that Owen has done so far and all of the ways that he has proven the doctors wrong. I have been praying for another miracle, and I will continue to do so.

-The unofficial plan was originally that Owen would probably have 2 surgeries to lengthen his leg, one around age 8 and the second around age 14. In the past year, pediatric orthopedic surgeons have begun performing the first lengthening surgery around the age of 4 in some patients. Last year Owen's doctor told us she wasn't convinced that was a great approach. I don't like the idea either, but for more practical "mommy reasons". The possibility was discussed again last week. Owen's doctor seems to have partially embraced the idea, but doesn't use the approach with every LLD patient. After much discussion we decided it was not the best plan for Owen.

-Owen's doctor showed me the x-rays of one of her LLD patients that just went through her first lengthening surgery. It was terrible, awful, heartbreaking, overwhelming and literally almost made me get sick. I can't even get into what is done and how the x-ray looked right now. It is too much. I told the doctor that I hate thinking about this, let alone seeing it on an x-ray. Her words: "I know, that is why I am going to keep showing it to you until it is time to lengthen Owen's leg." I love her. She is wonderful and understanding and knows just how to help me get through this extremely difficult situation.

So that is it in a nutshell. It is hard going to the follow-ups and hearing the measurements. We are lucky that Owen will be able to have his leg fixed, that he is doing so well in spite of his LLD and that it is not life threatening. Still, each orthopedist is like a slap in the face. A reminder that yes this is a reality and even though it can be fixed it will be a difficult process. I am thankful we don't have to do it again until next year.

Hips Don't Lie

Today Owen had a follow-up appointment with his orthopedist. We haven't been there in 6 months. The purpose of the appointment was to check the growth of his hips as well as measure his bones in order to keep tabs on his leg length discrepancy (LLD). We got to the office and Owen was doing laps around the waiting room. He would run past another waiting patient and stop to say hi. Again, he brought smiles to so many people waiting. He kept going over to the door that leads back to the exam rooms, looking at me and laughing. When it was finally his turn to go back I scooped him up and followed the nurse, knowing that his time for exploring and playing happily had ended. The boy is not a fan of doctors' offices, and really who can blame him. The nurse commented on how much he was running around and was happy to see it.

A radiology tech came in to get us to come take Owen for his x-rays. Wes and I both suited up with lead skirts (for lack of a better word) to protect us from the radiation. The way the x-ray is taken, Owen has to stand up on a step-stool looking thing with his back against the x-ray board. He has to stand with his left leg on about a 3 inch block. Today it was 2 boards and a children's Bible. I stifled a laugh at the irony of him standing on a Bible. He actually did well, much better than last time. He moved right when they took the first x-ray so another had to be taken, but last time we could barely get him to stand there.

The doctor came into the exam room and told us that his hips look great. That is one of the most important things with Owen regarding his LLD. First of all, he had hip dysplasia, so making sure his hips are developing and forming well is critical. Also, without the structure of a strong, well developed hip, a leg cannot be lengthened. Since that is what will correct his LLD, we need his hips to be in top notch condition. They look great, and hips don't lie! Great news.

We expected the discrepancy between Owen's legs to have increased. It did not. His left leg is still about 3 cm shorter than his right. It is GREAT that the discrepancy did not increase. The doctor (I don't know if I've mentioned but I love her) insists that it will eventually increase, but I choose to hold out hope that it will not. She watched him walk (and run and climb) and said that no way did he need a shoe lift at this point. I was thrilled to hear that. I feel that we should wait to open that can of worms until it is absolutely necessary medically. He gets around amazingly, and really doesn't even notice the difference. Even MORE good news, we don't have to go back for another follow-up for a year. A year. This is the first specialist that has allowed that long between visits.

We discussed the lengthening procedure. She believes that she will have to perform two lengthening surgeries. A bone can only be lengthened by 20% at a time. I don't like the thought of it, but the good news is that she feels she will only need to lengthen his femur and not his tibia. She thinks the discrepancy in the tibia will be so minor that the length can be made up in the femur. This is promising because only one bone will need to be broken. One thing that was quite shocking was when she shared with us that at the last deformity class that she attended, there was discussion about beginning the lengthening process at the age of 4. Previously we had been told age 8 at the earliest. I just didn't feel great about the idea of a leg lengthening surgery at the age of 4. She agrees, saying that she is not sure how comfortable she is with the idea. I am not sure how she is thinking about it as a surgeon, but as a mom who has a 4 year old I am aghast at the idea of keeping him non-weight bearing, about turning screws in an external fixation device to grow his bone when he can't truly understand what that means. After the lengthening is complete a child can walk, but it is very important not to bear weight during the actually process of growing bone. The screws can only be turned 1mm per day, so it isn't an extremely expedient process. The good news is that we still have 2 1/2 years of medical advancement and time for the medical to community to decide what is best. It is not a decision that needs to be now.

I think one of the most satisfying aspects of today's appointment for me is that according to what the doctor said when she first began seeing Owen, this would have been when he started to walk. Instead he has been walking for 8 months and is now running, climbing and getting around like he has no idea that he has LLD. Again, he amazes me, I am so proud of him. The doctor was too, it was clear.

News from the Orthopedist

Owen had an appointment with his orthopedic surgeon on Tuesday. This was the first official appointment to discuss and deal with his leg length discrepancy. Of course we have known about the LLD since he was 5 days old and learned more when he was about 2 months old. We thought we were dealing with a congenital short femur and knew that he would require a leg lengthening surgery. Because the surgery needs to be coordinated around his growth pattern and growth spurts it will likely be when he is between 8 and 10 years old.

This was the appointment at which we were to begin measuring the length of the femur. He had a baseline x-ray, which unfortunately showed not only that the left femur is 2 cm shorter than the right, but that his left tibia is also short. I was devastated. I did not expect to go there and receive news that yet another thing was wrong with my Little Man. Dr. Casey, his orthopedist was not all that surprised and I guess I really shouldn't be either. The discrepancy has always been obvious in the femur and not so obvious in the tibia (it is 1 cm short) but we were never told that his tibia was unaffected. At this point he is much to young to consider lengthening, but this makes figuring out how to go about it even more difficult. There are what seem to be 100 different options. To name a few, she may have to lengthen the femur and the tibia, just the femur, lengthen both twice, lengthen both once and then shorten the "long" leg a bit. There are complex growth formulas which she will use in conjunction with measurement on x-rays to decide what to do. The bottom line is that it is going to be a long time before we know anything, and it is weighing heavily on my mind.

The good news: she was thrilled that he is walking and that he did so as early as he did. She said the strength is equal in both legs, he has done a wonderful job compensating for the discrepancy and she believes he will continue to do so. That brings me to the next issue: heel lifts. Since the surgery can't be done until he is much older, it will be necessary for Owen to have a heel lift on his left shoe. We were expecting that to begin now since he is a full-blown walker, but for many perfectly reasonable and understandable medical reasons that I will not bore you with, she wants to wait. I didn't want to wait and thought about arguing with her about it, but she was able to validate her reasoning and convince me that it is better to wait. We go again in 6 months for more x-rays and measurements. At that time we will revisit the possibility of beginning the lifts. At the very latest we will start with them when he is 2.

More good news: His hips are both still in perfect position and are looking great. Also, the bone quality and composition in the left leg looks just the same as in the right. That means it is just the length discrepancy and not something worse or more complicated that we are dealing with.

This is the main reason I have been hesitating to post. I didn't know how to talk about this latest development. I didn't know how much to share or what to say. What it has come down to is that this is my outlet, writing is my therapy and I have always been very honest about my emotions and feelings. Ok, so we got some unexpected and bad news, but we also learned that it is not the end of the world, it is still fixable, and there is plenty of good news to be thankful for. Don't get me wrong, I am thankful, eternally thankful and grateful. I am also angry, confused, sad and just upset and frustrated. I hate having to watch my baby go through this, I hate that he has to deal with this. I want what is best for him. I don't want to have to wait, I don't want him to have a disability to deal with for years to come, I don't want to watch him struggle. I don't want to go back every 6 months for more x-rays and to be told that the discrepancy is now larger, to continue to be fitted for new heel lifts each time he outgrows a pair of shoes. I guess what I am trying to say is that I am having a hard time with all of this. I am blessed to have Owen, I wouldn't give him up for anything in the whole wide world. It is just hard to watch your baby go through hardship, it is hard when there are things that you cannot fix no matter how good of a mom you are. It is a terribly helpless feeling.