We had another appointment with Dylan's orthopedic surgeon on Tuesday, June 21st. It went really well. We went prepared with our lists of new questions to ask and we got some really good solid answers.
There are still a lot of "if this, then that" in the mix, so there are still no definitive answers as far as WHAT is being done. And we are totally okay with that. We understand why and we agree with everything.
Our main question was if there was a general time frame that we could expect this all to start happening. Obviously, we want what is best for Dylan, both physically AND emotionally. We were just worried about it being more psychologically damaging for Dylan if, let's say, he gets his leg amputated at age 4 or 5 as opposed to 1 or 2. Try imagining explaining to a 4 or 5 year old who gets that they have a leg, they might also kind of understand that it's different than his other leg, but it's still there nonetheless and they've made it work for the past 4 or 5 years and they will remember that they had one, that they are going to go to sleep and when they wake up their leg is going to be gone. I would imagine that would be much harder to explain and for them to really understand than to a 1 or 2 year old, who won't quite get much of it. Anyway, so that has been a concern of ours. Obviously though, we want what is best for Dylan, we just need to take in every aspect, and if it was best for Dylan to do the amputation at a later age and we felt that would work out, we would do it. ANYWAY, Dr. E agreed with us though. He said that ideally he would like to have this type of surgery done before the 1st birthday. But he has other issues with his femur and knee that all need to be considered. Amputation is not reversible and he wants to make sure we do the absolute best procedure we can for Dylan, which will require a little more time to see how certain parts continue to develop.
So we know that it is almost 100% going to be some sort of amputation/prosthesis route and we know that it will most likely be done before his 2nd birthday. At this point there are three different procedures that we have talked about. The most ideal would be a below the knee amputation. He said the amputation would be right at/above the ankle. That would give him the best functionality with a prosthesis. The second best option would be the Van Nes Rotationplasty that I mentioned in the March 2011 update. You can read about it there. This would give him functionality as close to a below the knee amputation, which again, is ideal to have some sort of "knee" joint. The third procedure would be an above the knee amputation. He did say this would be a little more difficult for Dylan, but that since Dylan is getting it done so young, he will be so used to it and will be able to adapt to it and make it work better than someone who has to get an above the knee amputation later in life. So, it's not a horrible option, it will still work and Dylan will still be able to be active with it, it's just not the most ideal.
The "IF this, THEN that"s that we are watching right now:
IF his knee is stable enough, THEN a below the knee amputation would be ideal. IF his knee is not stable enough and his ankle is, THEN rotationplasty will most likely be the best option. IF his ankle is not stable enough, THEN rotationplasty is not an option anymore. So, IF neither his ankle nor his knee are stable enough, THEN most likely it will be an above the knee amputation.
Things that we observed about each of these body parts in this past visit:
Right now, his ankle is not looking so great as far as being stable enough to handle a rotation plasty and act as a knee joint. It seems to be turning outward quite a bit and the doctor said that it's pretty typical when there is no fibula bone there to anchor it straight. So we're not sure rotationplasty will work after all, but it's still on the table as a possibility as maybe his ankle won't turn too much more and will work after all if we needed it to.
It doesn't appear Dylan has a patella (knee cap). Bryson figured this out a couple months ago as we were feeling Dylan's leg and the doctor confirmed that it does appear that way. At this point neither knee cap is showing up on x-rays as they are still too cartilaginous to see, but you can feel his right knee cap and you can't really feel one on his left knee. It also seems that he is missing some ligaments in his knee, which the doctor explained is why his knee pops so much. Neither of these are detrimental and the doctor said Dylan could still possibly have a below the knee amputation with both of these situations as long as his knee, as a whole, is stable enough. And so far, it appears that Dylan has great movement and stability, so that is promising.
Last appointment the doctor mentioned wanting to keep an eye on his hips and so far those are still looking good. Still too cartilaginous to totally confirm that they are 100% good, but the doctor doesn't seem too worried about them anymore. So that is good news.
The doctor said that what is really throwing him (the doctor) off is the fact that Dylan has such a good foot. He said you almost never see a foot like this on a leg that is missing the fibula entirely (which appears to be Dylan's case). You typically get missing toes or other foot bones, which makes the amputation decision an easier one. So he is having a hard time deciding what to do with that. This, of course, is just one more wrench in our (Bryson and I) thinking...so why was Dylan given this perfect foot? Does this mean something? What are we supposed to do with it? Just more to think about. Obviously, you don't want to get rid of something that is such a rare positive, but at the same time the foot is only as good as the ankle and the rest of the leg. You know? So as much as we would like to keep his perfect little foot, it just may not work.
The last thing talked about was the length of the femur. Obviously if we ended up doing an above the knee amputation that doesn't really matter. However, it MIGHT be an issue if we do a below the knee, but at this point we didn't really even talk about it in detail. He mentioned there is a possibility of doing a lengthening procedure on the femur if we needed to, to get his knees to match up, but that may not be necessary. We will talk more about all that as we start to narrow down the options.
So all in all....we left feeling really good. We have a general time frame that we were hoping to have. And we are making strides in the right direction as far as being able to figure out what exactly our options are and what is going to be best for DYLAN.
The doctor kind of made it sound like we should hopefully know even more at the next appointment (which will be in September), so we're crossing our fingers that is the case. He said his "gut feeling" based on what he saw during this appointment, is that it will end up being a below the knee amputation, which is comforting. Only time will tell if his "gut" is right. :)
They were so impressed with Dylan and how active he is and how he seems to really have that fighter attitude. He is our little warrior! He will be just fine through all this.
They also mentioned how they were so glad that we (Bryson and I) were so positive about this whole situation. They mentioned this last time and the nurse who always comes with Dr. E at each appointment, stayed after again to tell us how she was so impressed with our way of thinking and our positive attitudes. She asked us why we were so okay with this, if we had a medical background or something or if we were just like this. We told her it's just not in our personalities to dwell on the negative, but instead to take the situation we and Dylan have been given and just move forward and make the best of it. I'm kicking myself now for not telling her the deeper reason why we are like this, which is because of our faith. We have a religious understanding of our purpose and of Dylan's purpose here on Earth. We have faith that we will be able to make the correct decisions and that Dylan will be able to live a happy, fulfilled life in this life and that is the most important thing.
I am SO grateful for the knowledge and faith that we have. The knowledge that we are only tested as far as we can handle, that we have a purpose that is so much more than this life, that Dylan was prepared for this life and without a doubt will be able to get through it. Does it make it easy? No. Not at all. This is still very emotional for us. But it makes it easier. This, in the scheme of things, is just a little hiccup. Nothing that can't be conquered.
We just hope and pray that we will be able to give Dylan the tools he will need in life to have this understanding as well. I think that is one of our biggest concerns. WE are the ones that will be responsible for teaching him his worth and his importance, no matter what he looks like or how he walks. It's something that we need to teach to all our children, but it'll be especially crucial for Dylan. The biggest part of this is his attitude and we pray we will be able to help him develop the most positive attitude. I have a feeling HE will be teaching us more than we will be teaching him.
Again, as always, thank you for all of the prayers on Dylan and our behalf. They are felt. They help us get through those more emotional days. And I know that Dylan will benefit greatly from all the prayers said on his behalf.
Dylan is a happy, smiley, easy going, energetic baby boy. We LOVE having him in our family! Dylan was born with a condition called Fibular Hemimelia and Congenital Short Femur. Like Nemo in Finding Nemo, Dylan was born with a "lucky" leg. It's been an emotional roller coaster, but we know without a doubt that Dylan will be JUST fine. All we need to do is "just keep swimming" through this journey we've been given. As a family we will get through this. Dylan...he will conquer this!
This is a blog following Dylan's leg journey. Dylan had a below knee boyd amputation in January 2012. We knew this was the best route to ensure that Dylan has a fulfilling, active, joyful life. Join us in this journey!
We hope to be able to connect with other families who are going through the same things as we are. Please feel free to contact us at firstname.lastname@example.org
You can read how we first found out about Dylan's leg condition HERE.