Monday, April 30, 2012

Things I never thought I'd say...

We giggle every time we say something that, if said in a non-amputee household, would sound absolutely ridiculous and wrong. But it has become commonplace to hear them said in our house on a daily basis.

"Uh oh, his leg fell off."
"Do you have his leg?"
"What was that sound? Oh, it was just his leg falling off."
"Should we put your leg on?"
"Do you want your leg off?"
"Wait, we forgot his leg."
"Kaden, do you know where Dylan's leg is?"
"Dylan, did you take your leg off AGAIN??"
While leaving Dylan with a babysitter, "If his leg falls off..."
"Kaden! Do NOT take your brother's leg off!!!"

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!


We gave the boys some much needed haircuts. Dylan's hair was getting out of control long and I just cut it like a month ago. It grows so fast! His hair is fine and smooth and silky and so you can't style it too well so it was always hanging in his eyes and if he ever got slightly sweaty, his hair would get so gross. Not to mention, at every meal he likes to rub his hands through his hair and so every meal would end up entangled in his hair.

One day I was so annoyed with his hair, I had just barely washed it but it was a warmer day and he was a little sweaty after playing around with Kaden and it was nasty, so I threw it up in a ponytail on his head. haha.

Kaden's hair is a little coarser and easier to style and doesn't get super nasty if he sweats just a little, but it too was getting a bit long.

So we decided to give them some nice, cool, summer haircuts. Something we could do easy at home. So we buzzed them!

Here are some before pictures of their luscious, long locks:

And here are the afters of the cool, chopped hairdos:

Kaden has had this haircut before so it wasn't too much of a shock to see him like this again. But Dylan was a shock! Bryson and I looked at each other right after and said, "Uh oh, what did we do??" He looked SO different and it took awhile to get used to it, but now we LOVE it! He looks so cute and nice and clean cut. is 100% easier to manage. If he wipes his dinner in his hair now, we can easily wipe it out. :)

Wednesday, April 18, 2012

Dylan putting his leg on...

If you haven't seen the post about Dylan WALKING, check it out below.

Dylan has been trying really hard to put his leg on by himself. It's really cute. He's actually gotten it a couple times with just a little assistance. But typically he'll put the leg portion on first and then put the liner part on the toes. It's pretty funny.

The other day we were relaxing in bed after naps and quiet time and he was playing with his leg. The videos are from my phone so they are wrong directions and poor quality, but you get the idea. Pretty fun, huh?

Earlier in the day I got a cute video of him dancing. :) Silly boy! my phone so it's turned sideways.

Monday, April 16, 2012


We are alive. It's been a crazy past couple weeks. We took a trip to California to spend Easter with my family. It was so fun, but I came home and had NO desire to get on the computer at all. I've gotten on a couple times to post a picture or two real quick, but never got far. Dylan decided to start WALKING and I had to get on real quick and share!! So he has been taking two or three steps here and there pretty much since he got his leg, but never tried anything more than that. He actually hit his face pretty hard one time falling from taking a couple steps and so he was much more reserved after that. He's cutting FOUR teeth right now and is getting over a little cold he picked up in California, so he's been SUPER fussy and uncomfortable and has had NO desire to do anything (especially try to walk) but be held by me or sit in my lap. He's been so sad. :(

Well, today after work, Bryson was trying, once again, to get him to walk a little...and he just took off and walked across the whole room. He's not super stable, but he's actually taking lots of steps all at once! It's SOO exciting! He'll be good and stable in no time now that he knows he can do it! We're so proud and excited and still amazed by our little warrior!

Check out the videos...

And a few shots of Dylan LOVING the beach in California! He LOVED playing in the sand and getting his feet wet. I read someone say somewhere "but if you amputate, he won't be able to feel the sand between his toes". I'm pretty sure he was feeling the sand between his toes just fine. :)