Space Leg #6 & Surgery #3

Our prosthetist has been asking us if we wanted to put a design on Dylan's new legs the last couple legs we've made. We've been so hesitant about putting designs on his leg for a number of reasons. We've never put designs on his leg in the past because I felt like that was something HE should be able to choose. He's now at an age that he can have an opinion and make that choice. However, he's also been at an age when his opinion seems to change every few weeks. So our main concern was that he was going to pick a design on his leg and then after a month of wearing this cool Lightening McQueen leg, or whatever he chose, he'd hate it and not want to wear this leg anymore because of the design on it. We had other concerns too. We don't believe in getting tattoos on our body and was this encouraging that in a way? I don't know!! Probably not, but I over think everything. haha! And then as a mother, I did worry that having a design on his leg would bring unwanted, extra attention to his leg. He's never had a problem with the stares and questions that he gets. And that makes me SO happy and proud to see that confidence in him that he just doesn't care. It's his leg. Whatever. That's his attitude. And a part of me could see him still not caring, but I worried that with the design, he'd get even more attention than he already does and maybe he'd start to feel self conscious about it. I worry about that, as his mother. But at the same time, I didn't want to make that a big deal to where he WOULD start thinking about that and worrying about it. So I kept my mouth shut. :)

So we've been telling him when he was 5 he could choose a design for his leg. We figured at five he'd have a better understanding that what he chooses is what he gets until it's time for a new leg. But as we were preparing for this new leg, leg #6, Dylan kept talking about how he really wanted a "cool" leg. And the bottom line is...this is Dylan's leg and if he wants a design, he should get to try a design out. Maybe he'll love it. Maybe he won't. But he and we won't know until we try. So we told him we'd go look at fabric and see if we could find something that I felt he was 100% sold on. We searched a few different stores and found a few different options but everything he was picking he'd say he liked but he didn't seem IN LOVE with. We had some Jake & the Neverland Pirate fabric and some monkey's in spaceships and some Tranformers fabric. I told him we'd go look at one more store and see if we could find anything else, otherwise, he was sold on the monkey's in spaceships (which I will be honest...was my least favorite...ha!...but he liked it and that's what mattered). Well, he really loves all things space (hence the space monkeys) and we walked by this really cool space fabric in this last store and he was like, "I WANT THIS!!" I asked if he was sure and he said "YES!! I really want a space leg!" So a space leg is what he got!! And I have to admit....it is REALLY cool looking! Our prosthetist did an awesome job and made sure to include the specific planets that Dylan wanted on the leg and it really is AWESOME looking!! Dylan is THRILLED! He couldn't wait to show off his space leg to EVERYONE we came in contact with for the next few days. It was so cute!! He still will say, "Mom, I really love my space leg! It's so cool!" It makes me happy to see him so happy about it!

Check it out!!

 

Surgery #3

Last May when he had the big surgery #2 where they broke and fixed pretty much every bone in his residual limb, one of the things they had to do was break his femur, rotate it, and then put a plate and some screws in his femur to keep it held together while the bones grew back together.

Check out the hardware in his femur!

This surgery is just to go in and remove the hardware from his femur. Now that his femur is all fused back together, they don't want to leave the hardware in too long because the bone can start growing over the hardware and it's just not necessary being in there anymore. So...this should be a fairly easy surgery (comparatively speaking). We hopefully won't need to stay the night at the hospital or anything. As soon as they can get him comfortable we can leave. Recovery should be minimal. I'm sure he'll be uncomfortable for a few days, but he'll hopefully be up and walking around quickly. He's not supposed to run or jump for 4 weeks, which will be hard considering he LOVES to run and jump. But overall, we are hopeful for a much better recovery considering his past two surgeries.

Dylan is having a hard time with it, though. It breaks my heart. We've been talking about it for the last couple weeks and he has seemed to be okay with it. He's made comments about how he doesn't want to have surgery again, but after we talk about it he seems okay. Well, yesterday he overheard me talking to the hospital when they called to confirm the time and normal pre-surgery protocol and as soon as I hung up he said, "Surgery is THIS Wednesday?" When I told him yes, he started bawling saying he was so scared. All he remembers is his last surgery and it was a BIG surgery with a long, painful recovery, so when he hears surgery, I'm sure that's what he's thinking about. It makes me sad. He just wanted to be held while he cried and cried. I told him it was okay to be scared but that I knew he was going to do awesome, just like he always does. He eventually calmed down and said, "Okay, I will be brave." And I know he will. He always is. This kid is tough!! We're definitely not looking forward to this, because surgery sucks no matter how "small" the surgery is, but we know everything will be okay!

And in other life related news...since I don't update this blog very regularly...The kids are LOVING talking to and getting excited about their new BABY SISTER joining our family late summer. We all can't wait!!

Update

My goodness, it's been awhile. Last time I posted was about Dylan's surgery. I still cringe when I think about that surgery and the long recovery. This surgery messed Dylan up pretty bad emotionally and mentally. And understandably so. This was a big surgery, and it was a long, painful recovery. He just wasn't quite the same for quite awhile after surgery. But I really feel like the last month or two we are finally starting to see our pre-surgery Dylan. Pre-surgery Dylan was so brave and not scared of anything. He was a pro at doctor appointments and never even flinched when he had to get things done like get shots or x-rays. He wasn't scared to try new things and was the first to jump into any situation. Post-surgery Dylan has been scared of just about everything. Normal life situations that wouldn't normally phase him were a struggle. He was scared to let anyone touch his leg/stumpy, even us. We couldn't get near it without complete hysterics. Especially when he still had stitches that were lingering (because he wouldn't let us get near them to clip them off). Doctor appointments and dental appointments were nightmares. He would shake and cry the whole time. It was really hard to see. So incredibly heartbreaking. BUT...like I said, our Dylan is coming around! In fact, he had his 4 year check up yesterday and talked cheerfully with the doctor the whole time. When she said he needed to get a couple shots he said, "That's okay. I'm going to be SO brave. I hope I get 4 shots since I'm 4 now." :) (he only needed 3 and he was a little bummed about that...haha!) And he was SO brave. No tears whatsoever. I'd say he's back!! He's back to his brave, full of life, a deep smile always in his eyes and on his face, funny, carefree self! And we couldn't be happier to see it!!

He really is a warrior!! Even warriors struggle in battle. But they KEEP FIGHTING. And Dylan has never stopped fighting. Even when he was really struggling, you could see the determination in his eyes and the fight in his spirit. I admire him so much!

He really is doing so great now. He's back to running and jumping and riding his bike (before it started snowing) and just being the active kid that he is. His leg is getting stronger and stronger, but it still tires quicker than it did before. We were able to go to Disneyland for the boys' birthdays last month and we were really impressed with how much he wanted and insisted on walking around. He walked most of the day and kept refusing to get in the stroller. He's feisty...but in a good way! :)

Here are some recent pics from the last few months.

Dylan rocked our 4th of July Parade with our church in his awesome red, white and blue wheelchair.

Hopping through sprinklers

Getting fitted for his new leg, 2 months post surgery. We can't thank our prosthetist enough for everything he does for Dylan!!

First time walking post surgery with his temporary leg. There were tears. But he tried and tried and tried again. 

Getting his official leg. He had his temporary leg for a couple weeks, so he was used to walking on it by this point and was excited to get his official leg. And check out the type of shoes he has on!! FLIP FLOPS!! His new foot has a split toe so he gets to wear flip flops for the first time!!! He is SO excited!! The things that excite an amputee. :) He wore flip flops EVERY day for as long as he possibly could.

Back on his bike!! He was riding his bike before he could even walk again. :)

Swim lessons. He did great!!

Backpack shopping.

First day of Preschool!!! He was SO excited!!

Hanging out with Jack, who also has Fibular Hemimelia. Cute boys!

Showing off their legs.

Playing at a splash pad.

He insisted on climbing the rock wall and totally nailed it!

Presenting a plaque to Dairy Queen from Children's Miracle Network for their help in raising money for Children's Hospitals.

Handsome boys! Matchy, matchy!

Seriously...his smile!!

Leaf jumping!

Halloween!

Dylan turned 4!

He wants to be a doctor when he grows up, so we got him a little doctor set to play with. :)

We went to Disneyland for the boys' birthdays.

After Disneyland we got them changed into their jammies so they could fall asleep on the way home. Apparently we took his leg off and pants off all in one sweep. Once we got home, I threw everything on the bed and seeing pants with the leg still in it made me jump a little. haha. Not something you see everyday. :)

Walking with Great Papa Jack while visiting California.

Enjoying some snow back at home.

Sledding!

Love this boy!