Friday, April 27, 2012

Pretty Amazing!

Our ONE YEAR OLD can put his own prosthetic leg on all by himself. It's pretty awesome, if I do say so myself!! As I showed in a previous post, he's been trying to do it for a couple weeks and he'd actually gotten it a few times. Well, we would help put the sock and the liner on and then he would get the leg on. We were still impressed with just that!

One problem with this, is that now that he thinks he can do it himself, he ONLY wants to do it all by himself (he's a very stubborn, independent little boy, which is a good trait for him to have...most of the time). :) If we put his leg on, he will quickly take it off and try to put it on himself. It can get frustrating because even though he can do a lot of it by himself, he can't do ALL of it by himself and he gets so mad when we have to help him.

Well, two days ago, I put his leg on and went to go make breakfast. As is typical, Kaden quickly informs me with a giggle that "Dylan taked his leg off, silly boy!!" I look over and sure enough, "silly boy" Dylan has his leg in his hands and a huge smile. I smile back and say "uh oh!" and then something to the effect that he'll have to wait for me to finish making breakfast to help get it back on. I turn around to do something in the kitchen and the next time I turn back, Dylan is walking towards me, leg on perfectly.

(A.) LEG ON PERFECTLY all by himself!!!
(B.) Walking like a champ!!

It was a fun sight to see!!

Since then, there have been numerous times when if the liner is already in the leg, he can get his leg on all by himself with no help from us whatsoever. He still struggles to get his liner and leg on separately, but is getting better at that too. He'll have this all down in no time. Now the sock is the only thing we really need to work on. And unfortunately, he's become interested in trying to do the sock himself too, but that part is a little tougher for a little guy. He'll get it all someday...soon, I'm sure of it.

Check out this cute video of Dylan putting his leg on. He's SO proud of himself! :) I apologize for the dirty, saggy diaper. He had just come in from playing outside with their little water table and he was drenched, including his diaper. :)

OH...and we went to another Amputee Clinic earlier this week. Everyone was SO impressed with how well he is doing, especially considering he's only had his leg for a little over a month!! Only bad news from the appointment is that there are definitely more surgeries in the future for Dylan. We knew this was always a possibility, but this appointment confirmed it. We are seeing more and more that his knee is not in the greatest shape. We knew it wasn't super stable, but at this appointment they confirmed even more so that it will almost definitely need some surgeries in the future. The problem with kids with FH is that because of the FH, their knees and ankles and feet are typically underdeveloped as well. Which is why a lot of people go the amputation route (unstable feet and ankles, or underdeveloped feet and/or ankles...or the length deficiency is too great, which was Dylan's case). Sometimes, even femurs (like in Dylan's case) and hips are affected too. Luckily, Dylan's hips are still looking perfectly normal. But his femur is much shorter (we've always known this) and his knee is pretty underdeveloped (we kind of guessed this).

We actually had a little scare this past weekend. We were on a quick vacation out of town to go see family and watch Bryson's sister graduate from college. {Go Carli!!} While there, Dylan was walking around a ton with all the family members there willing to hold his hand. On Saturday we had actually met up at a park with another FH family that we've been in contact with through the support groups I joined and we were showing each other our kid's legs and I noticed what appeared to be Dylan's knee cap on the SIDE of his knee and his whole knee was swollen!! We were pretty worried about it because he hadn't been putting any weight on his leg that whole day and now we could see that something was definitely wrong. We talked to the on call surgeon at our children's hospital to see if we needed to take him to a hospital where we were and they told us to try to put his knee cap back in place. We messed with it for awhile, nothing seemed to "pop" back into place or anything, but by the end of the day (after not putting his leg on anymore that day), it was looking better and less swollen. We knew we had our Amputee Clinic appointment and Dylan was acting totally normal so we figured we'd just wait the couple days until the Clinic. Sunday we didn't put his leg on at all. Monday I tried putting it on and he seemed fine with it. He walked around quite a bit with it like he used to and all seemed normal.

Tuesday at the clinic we told them about what happened and after examining Dylan's leg, they confirmed that it does appear his kneecap is actually slightly off to the side, not out of place. In fact, they said it appears the whole leg (knee and below) seems to be slightly turned outward ("valgus" for all you interested in the medical term), which would explain why the knee cap is off to the side a bit. Anyway, they said it's not the end of the world. It probably got swollen on our trip because he had been doing so much walking around the day before, much more than what he is used to. So now we know we need to work our way up to walking ALL day. :)

His tibia, which was straightened during surgery, is also showing a little bowing again. They said this happens, even if it was perfectly straight after surgery. It's not super bowed or anything, it's just not super straight, which is ideal.

They said both of these issues (the valgus/knock-knee/outward turning stuff and the re-bowing of the tibia) are fairly common. Not ideal, but that they do happen often. They said it can all be fixed with surgeries, but that for the time being, since he is doing just fine and playing and walking like normal, they will just keep an eye on these issues for the next few years. At some point, most likely between the ages of 3 and 10, he will have to have surgeries to correct these. And when this will happen will just depend on when it becomes an issue for him and/or when/if it becomes more severe.

But overall they were really pleased with him and his progress and how well he is doing! AND our prosthetist (who is part of the Amputee Clinic) was able to lengthen Dylan's leg again. Since we last saw him, Dylan has grown and his leg was quite short. So now Dylan's leg is a perfect length and he is SO much more comfortable walking. In fact, he has started to walk more than crawl the last few days, which is so exciting!! He'll be solely walking and then starting to run in no time!

Another cute video of how well he is walking. Again, apologize for the saggy nasty diaper. :) I like how he has to stop and give his monkey a little love before he can continue on. He LOVES that monkey of his!


  1. Hi, I've been following Dylan's journey for a little while... I can't even remember how I came across your blog but your little man captured my heart instantly. Today I was reading this post and my son (who is 16 months) was sitting beside me and as I played the video he stopped colouring and watched with a huge smile on his face. He kept clapping and saying Yay as Dylan walked back and forth. Then when it was over he kept pointing and wanting to watch it again and again!

  2. He looks like he is doing great. I can't imagine Anna putting her leg on by herself so early! We also have been getting some difficult news. Anna's heel migrated, and when we met with the prosthetist he said that because of the big lump where her heel is, she won't be able to slide into a prosthesis. They will have to make special doors or straps to get around that bump. And the only way to fix it is, of course, with surgery. We are amazed at how that could happen with an amputation that is supposed to be the best for a prosthesis... here we are being told her prosthesis is going to be less than great. Sometimes I wish things could just go RIGHT for once. Ugh.

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