Wednesday, March 26, 2014

Dylan's 2nd Surgery :(

We went to Amputee Clinic yesterday and received some not so great news...Dylan will be having surgery soon. We just need to figure out when works best for us and call and schedule the surgery to take place in the next 4-6 months. Yikes! So not looking forward to this.

We knew this was going to be happening. We've known from the beginning that he would be needing "maintenance" surgeries in the future but were told that we would wait until his issues became a problem before doing any surgery. Well, they are becoming a problem as of late. He has been complaining a lot about the bottom of his stumpy hurting and in the past week or two has asked at least once, if not twice, a day to take his leg off because it hurt too bad. :( SO...surgery time it is.

In this surgery they will be doing three things:

1. Femur - His femur (thigh bone) is externally rotated, which puts his knee on the side of his leg instead of on the front. I'll attach a picture that I took today of his knee below. SO...one of the things they'll be doing is cutting the femur towards the top and then rotating his femur internally to line everything up and then putting some plates and screws in there to hold it all together.

The picture is taken of him sitting, me holding his leg straight out and looking directly straight down on to his leg, where his knee should be. Yesterday at clinic the doctor marked where Dylan's knee actually is on his leg. The line was starting to wear off, so I drew it back on on the computer so you can see just how off to the side his knee is. Isn't that crazy? 


This is an x-ray of his hip. The line drawn on is where the doctor will be cutting the femur, then rotating it, then screwing the bottom portion of the femur back to the top (head) of the femur. Sounds painful, right? :(

2. Tibia - The second thing they will be doing will be another tibial osteotomy because his tibia (shin bone) is bowing again. They did one of these at the time of his amputation, but it has bowed again, so this time they will be cutting the tibia like before (in a few different places), putting it back together like a puzzle to make it all straight again, and this time they will put a rod in his tibia that will stay there (last time the rod was removed after 6 weeks) to hopefully help avoid it bowing again.

3. Calcaneus - The third thing being done during this surgery is re-shaping and re-positioning of his calcaneous (heel bone). The type of amputation that he had (a Boyd...if you were wondering) leaves the calcaneus and puts it at the bottom of his tibia. The benefit of this is better weight bearing since it has the heel bone and pad attached to the bottom and it gives a little extra length to the residual limb, which for Dylan's case (his leg being SO much shorter than normal) was something that he could use since it gives him more residual limb to work with in a prosthesis, etc. The downfall is that the calcaneus is a bone and bones grow, so the calcaneus continues to grow and can make the end of a residual limb too bulbous, so they do "maintenance" surgeries to reshape the calcaneus. We knew this was something he would deal with at some point. The other downfall is that the calcaneus can migrate. And Dylan's has done both. It's getting too bulbous and his calcaneus has migrated back a bit (most likely a result of the bowing in the tibia) so instead of it being at the bottom of his stumpy, all his weight is being put on the tip of the calcaneus...which is what is causing him so much pain right now. So the surgery will take off some of the calcaneus to fix the bulbous problem (which you can also see in the xray below how his stumpy bulbs out in the back towards the left of the picture) and then they will reposition the calcaneus to the bottom of his tibia where it should be.

This is an x-ray of the side of his leg. I marked where his calcaneus is with a red line and the yellow arrow is pointing to right where all his weight is being put when he is wearing his leg and walking, which as you can see is right on the tip of that calcaneus (instead of on the bottom/flat part). It's crazy to see the inside of EXACTLY where he points on his stumpy when I ask him where it hurts and seeing...oh yep, the xray shows exactly why it hurts right there. Poor guy. 

So there you have it. :) We knew that his amputation was not the only surgery he was going to have. We've known that all along. With Fibular Hemimelia it's very common to have knee and upper leg/hip issues. Most of these surgeries are considered fairly small and "maintenance". I think the femur surgery is more than we were ever hoping for, so that's disappointing, but the other two we knew were always possibilities, if not inevitable. It's sad and hard to think about going through surgery and recovery again, especially now with a child who LOVES to be very active, but we will all get through it and I'm sure Dylan will figure out ways to get around and deal with his situation for the time being just like he did last time. OH...the good news is that we originally thought that since he was having this surgery on his hip/femur where they will be breaking bones, etc. that he was going to have to be in a half body cast from his hips down his leg...which would have been miserable. BUT, they told us yesterday that he will just be in a cast similar to his last one (which is from mid thigh down his leg). They said that since there will be so much hardware in there holding his femur together and since kids heal so fast, they don't worry about anything going wrong and it's better to give him as much mobility as possible to keep him as active as possible. Thank goodness! We will be given a walker to help him walk around where/when he can since he won't be able to wear a leg for over 6 weeks (6 weeks in a cast and then a couple weeks for his new leg to be made). And then we will have a wheelchair as well to be able to wheel him around longer distances outside of the house and stuff. SO...recovery is not going to be fun, but it will be much more manageable than we initially feared. That makes me feel ever so slightly better. :)

I just have to keep reminding myself that as hard as it's going to be to send our son into surgery AGAIN and how daunting going through recovery again sounds...this is all to IMPROVE Dylan's quality of life. It's going to make him more comfortable and more functional. And that is ALWAYS our #1 goal. And just like last time...we will be lifted up and carried through this next stage by leaning on our Savior, Jesus Christ. We literally could FEEL all of your prayers said on ours and Dylan's behalf and that truly got us through some very hard times and I know it will get us through the hard times ahead. So thank you in advance! :)

OH...want to hear the drama that happened today? Our leg guy made a few small adjustments to Dylan's leg yesterday in an effort to help alleviate some of the pain he's having right now until surgery can fix it all. He also suggested wearing a special sock that goes over his liner to see if that would help suspend his leg better, putting less pressure on the bottom of his stumpy. So I tried it this morning...it was SUPER tight but he was okay with wearing it around for a little bit just to see if it would help. After about 30 minutes he started complaining that it was too tight and hurt really bad. So I went to take his leg off and COULD NOT get it off. I tried and tried as hard as I could and felt like I was going to rip his whole actual leg off. His knee was looking all funny and I was freaking out. Dylan started crying that it hurt really bad, I couldn't get it to budge AT ALL. So I called Bryson in a panic and then threw the kids in the car and raced up to his work to see if he could get it off. Dylan cried and cried for the full 45 minutes of me trying and then having to drive to Bryson's work. Poor guy! It took both of us...me pulling up on his liner and Bryson yanking down on his leg to finally get it off. Thank goodness! It ended fine and Dylan was able to put his leg back on (WITHOUT the sock!) a few hours later and play around just fine. But we (Dylan and I) were a little traumatized. :) And ps...I totally don't blame our leg guy for this. What he suggested totally makes sense and could've possibly helped Dylan be more comfortable. It was worth a shot to help his ongoing pain. I shouldn't have let him walk around in it for so long (30 min) when it was clearly too tight to begin with.


**General update on our handsome man since it's been so long. He really is doing GREAT! He is such an active little kid and we constantly hear how people are shocked to find out he has a prosthetic leg because he does so great with it. He LOVES to run and ride his bike. He loves to jump off of anything that he can climb (which freaks us out be he does just fine!). He loves to play outside and play sports and go to the park. He is potty trained! YAY! He is such an independent little boy. He loves to do everything himself with little or no help from us. He is so brave and is such a tough cookie he has a hard time admitting when he is hurt or in pain, which is why the last few weeks of him complaining about his leg have been hard because it must mean that he really hurts. He LOVES his big brother and little sister. He is the most kind hearted little guy and loves to make people feel better if they are sad by giving hugs and rubbing their back and singing to them. He makes us smile and laugh all day long.

So handsome!

3 years old!

Riding his bike!

At an event our hospital invited us to!

Dylan and I were on the news talking about a fundraising event we were a part of for our hospital!

He LOVES his siblings! And they LOVE him! :)

Wednesday, December 4, 2013

Eek! ;)

We have a cannibal in our house! Eek! :)

Sunday, September 1, 2013

Amputee Clinic Update

We made a trip to the hospital to visit the Gait Lab and Amputee Clinic the other day. We do this about every 6 months now just to check up on everything. It was a 3 hour visit in total, but the boys got lots of tasty snacks from the staff and new car toys, so we can't complain. :)

Keeping entertained while waiting for the team to come in at clinic. They have these great thermo sensor boards that the boys love playing with. And they also love drawing on the whiteboards.

Kaden was great and kept himself entertained with the new cars they got to pick out at Gait Lab and on the iPad.

I FINALLY got Brielle to sleep after lots and lots of screaming.

And yes, that is her headband on my wrist, not a bracelet. haha

Check out Dylan's new trick. He's getting REALLY good at balancing on his good leg when he doesn't have his prosthesis on. He can also JUMP on his one leg when he doesn't have his prosthesis on. It's crazy!

SO....the great news....Dylan is doing GREAT! The doctors are so impressed with how well he has adapted and how well he is progressing! He runs and jumps and climbs and does everything like a two year old...and even a lot of things that "normal" two year olds don't do. He is just amazing and we are so proud of him! The not so great news....we knew Dylan would need more surgeries in his future..."maintenance" surgeries as they call them. There are four things that need to be fixed on Dylan's leg that were addressed today. The first issue: His femur is turned outward, which puts his knee at a weird angle (off to the out side instead of straight on)...so they will need to do what I believe they called a femoral derotational osteotomy (or something close to that...ha...I'll learn the exact term as it gets closer) where they will go in and reposition his femur into the correct position it should be in. The second issue: When you do put his leg in the right position (with the knee facing forward as it should) he has a valgus knee (or knocked knee) meaning his knee angles inward. There is a simple (relatively speaking) procedure that will help fix that. The third issue: His tibia, which was severely bowed at birth and fixed at the same time of his amputation, is beginning to bow again. We knew this was something that would most likely happen again. It is no where near as bowed as it used to be, but it will continue to bow with growth, which could get in the way of prostheses fitting correctly and cause some pain. So that will need to be straightened again and now that he is older, they will most likely put a rod through his tibia (on the inside that will stay there) this time to help it stay straighter for longer. And the fourth issue: His calcaneous was put on the bottom of his stump during his amputation. This is what a Boyd amputation is, keeping the calcaneous (heel bone) and anchoring it to the bottom of the stump, which is better for weight baring, etc. The issue is that the calcaneous continues to grow and in order to keep the bottom of his stump from getting to bulbous at the end, they have to go in and shave/reshape the calcaneous when it starts to get too big. We already knew about most of these "maintenance" surgeries and knew they were in our future. The femur issue was the only one that was not originally part of the plan, but is now. Anyway....turns out these will be happening sooner than we thought....most likely in the next year or two. The good news is they are planning on just doing ONE surgery and addressing each issue in that surgery so that it will all be done at once and he can move on much faster. Since he's doing so great right now and none of these issues are presenting any major problems at this time, they want to hold off. But they said they do forsee these needing to be done in the next year or two. They want to get them done and over with before he starts school, that way surgery and recovery don't get in the way of him being able to play and be normal at school. So he'll have all of those issues taken care of at once (or that is the plan) and then have 6 weeks of recovery or so and then he will hopefully be able to be fitted into a new leg and move on shortly after that. SOOOOOO not looking forward to going through surgery again. :( But our goal (as well as the doctors) is and has always been to make sure Dylan is able to do whatever he wants to do...to run as fast as he wants and play as hard as he wants and just be a kid and eventually these issues will hinder those abilities to a degree, so we will do what we need to do to keep him as comfortable and happy as we can. But the thought of seeing him go through pain again and the not fun recovery....breaks my heart already. :( BUT...just like last time...I know he'll do great and once we get past this hurdle (more surgery and recovery), he will move on and continue to do amazing things. And until then, he will keep just being the awesome kid that he is! :)

Sunday, May 19, 2013

Well, hello there!

It's been awhile (besides my quick introduction to our sweet Brielle)!! A lot has happened in the past few months. Mostly just normal day to day life stuff, but there have been a few extra special things that have happened along the way.

We've celebrated a few holidays and had some fun with them!
 
 

We enjoyed some fun times in the many snow storms we got this year.
 

Now that the weather is warming up, we've enjoyed lots of time outside, riding bikes, on walks, running through sprinklers, and at the park.
 
 
 
  
     

 
 



This picture cracks me up. Dylan said, "I'll catch you, Kaden!!" haha!


Look how awesome Dylan did riding a scooter for the very first time!

We've been super heroes!
  

We've spent a lot of time, lately, loving on Miss Brielle, who is now over a month old and starting to smile!
 
 
 
How blessed am I??

We spent a little time in the ER with Dylan. He bonked his head so hard one day and then had trouble walking afterwards. Couldn't walk more than 3-4 steps without falling over...like a very drunk 2 year old. It was pretty scary, but after lots of tests, they found no concussion, no swelling or bleeding on the brain. He was walking normal by the evening of the next day.

But the coolest thing that I have been wanting to share with you guys, but have been trying to figure out how to without sharing too much information that I have tried hard to avoid sharing on this blog (doctor names, hospitals we go to, area we live in, etc), is we were asked to be a part of a fundraiser for the hospital that Dylan has been going to since day one. We jumped at the opportunity to help raise money for this hospital that has helped make our son's life better than we ever thought would be possible. They wanted to feature Dylan (along with some other kids from the hospital) and his story. We didn't realize just how much it would involve, but we ended up on the radio, TV news, and in the newspaper telling Dylan's story. It ended up being such an amazing experience and we met SO many great people through it. We agreed to do it for a few reasons. 1. We were thrilled about the opportunity to help the hospital out. and 2. We look forward to the day when we can show Dylan the news story and the radio story and the newspaper article and show him just how much he touched and inspired many people. I wish I could share the stories with you guys. The people who put them together did such a great job. Unfortunately, they share a little too much personal information that I don't feel comfortable sharing on the blog (which is read by people from all over the world). If I can figure out a way to edit them, I will share them eventually.

Some pictures they wanted of Dylan. :)
 

Here is Bryson and I during our live on air radio interview.

Getting ready to do our live TV news interview.

One of the amazing kids we met during the process. He lost his leg due to cancer. Such an inspiration!