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! :)
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!
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.