Thursday, July 26, 2012

Gait Lab & New Leg Fitting

We went to our amputee clinic last week. We typically have to wait for awhile before we are seen and so we just let the boys walk up and down the hallways because there is no way they are going to sit quietly in a room for an hour or more. Plus, the amputee clinic is fairly casual. There are usually other amputee families around and so we all chat out in the hallway until it is our turn. This time there was this cute little girl, maybe 5 or 6 months younger than Dylan, who was born without a hand. Dylan and Kaden were pretty fascinated with her. Kaden had lots of questions for her mommy and thought it was SO cool that she could still crawl with no hand. We pointed out that she can crawl without a hand, just like Dylan can walk without a foot! It was fun to see him making the connections. I'm glad that he will have these opportunities and experiences to meet so many kids and people with special differences. Every time we go to the hospital for an appointment, we always see other kids in wheelchairs and braces and casts and prosthetic legs, etc. and each time we get to explain to him that that kid uses a wheelchair to help him get around just like Dylan uses a prosthetic leg, or that kid has to have braces to help make their feet strong so they can walk, etc. I hope this helps him be very accepting of everyone, Dylan too.

Anyway, the amputee clinic went great. Every nurse, doctor, physical therapist, and prosthetist that saw him was SO impressed with how well he is doing. Those who saw him for the first time are shocked when they find out he's only had his leg for 5 months. Everyone got a good kick  when he started to cry because they wanted to take his leg off. They loved that he loves his leg so much! We're so proud and impressed as well! 

Dylan was great during the clinic. He let them check out his leg and stump, he walked and ran and jumped on command. As we chatted with the doctors and nurses he walked between them saying hi and waving. OH...and the cutest part. When everyone was first coming out of the room next to us and heading into our room, Dylan watched each of them cautiously, but smiled and waved when they did, but when Jason, our prosthetist, came out, Dylan walked up to him and gave him a big hug. It was SO cute and everyone oohed and aahed at how sweet that was. Dylan is starting to associated Jason with his leg, and clearly he loves him for it! :)

The physical therapist left at one point during our appointment and came back in saying she had talked to the Gait Lab/Department and they wanted to do some videos of Dylan. They said he's progressing so well, they wanted to document his progress. Our doctors and prosthetist have started putting smaller sized feet with a slight "rocker" on the bottom of prosthetic feet in young children, because they feel it will help them learn to walk better when they are first learning to walk on their prosthesis. Dylan's great progress is showing how this seems to be working and so they want to document it to continue to study how this helps. So we set up an appointment for a few days later to go down to the Gait Lab to get some videos of Dylan walking.

A couple days after the amputee clinic, we headed back to the hospital to go to the Gait Lab and to also get Dylan fitted for his NEW leg!

The Gait Lab was really cool! They have this big blue room with cameras set up all around. They put these little reflective balls on Dylan's feet and then had him walk up and down this red "runway" and the cameras followed him. He was a little hesitant of having the balls stuck to his feet, but once we distracted him he walked up and down that runway like he was a model. haha. They said he followed directions better than most of their other patients. :)
(I apologize for the lack of quality on some of the pictures, some were taken with a phone camera and lack of sound on the first video, it was taken from a phone, as well, and for whatever reason the sound never transfers over.)

They said that little black pad has pressure sensors and measures the size of his feet and how his feet rolled while walking (or something like that). Pretty cool! It'll be fun to see his progress through these recordings. We'll be going back in periodically, when he gets a new leg.

Speaking of a NEW LEG!! after our appointment with the Gait Lab we headed back up to get Dylan fitted for his brand new leg! I can't believe he grew out of his first leg in just 5 months. That is so quick!

This time around we are trying a new suspension system. Currently I believe his suspension system is considered a suction socket. It's just a sock and a liner that is tight enough that it keeps the leg on with "suction". This time around we are trying out a silicone liner with a pin in the bottom that will then click into the bottom of his leg and locks in place.

I was nervous that he wouldn't like his new leg. It's not a soft sock on his skin anymore, it'll be a slimy/sticky-ish silicone liner and I feared that he would hate the way it felt, which would make him not like his new leg.

So the first fitting Jason put on the new silicone liner and got that cut to the right size, then casted his leg to get the shape. Well, my fear that he would hate the silicone liner was eased. :)

He resisted a little at first, but I think he was more upset that we took his leg off.

But he got over it real fast and was a little fascinated with his new liner. In fact, Jason had to take it off at one point to cut it to size and Dylan kept trying to grab it to put it back on. :) The rest of the appointment he was so chill. He just drew on the paper he was sitting on and talked to Jason while Jason casted his leg and got things figured out.

Kaden put the portion of the silicone liner that Jason cut off, on his leg and said, "Look I have a prosthetic leg!" :)

So that was all last week. Today we went back to try on his new test leg. We were still slightly worried that Dylan would hate his new leg. He didn't seem to mind the liner, but who knows how he would feel about the whole set up. However, he once again AMAZED us! He let Jason put the new leg on and immediately said, "Walk!" So we set him down and he just took off like there was nothing new. It was awesome!! AND...his new leg looks SOOOO great! The new foot looks more realistic, which is an added bonus. But the best part is that he walks BETTER in this new leg. He looked so good walking around in his new leg. And he seemed to really like it. Every time Jason had to take it off to make corrections or check his stump, etc., Dylan would get anxious to put it back on. I can't wait for him to get it for good next week! I was too excited watching him walk around today that I totally forgot to take some pictures, but I'll be sure to take some when we get his new leg!

Wednesday, July 25, 2012

Crayon Toes & Walking Leg

Today was one of those "doh!" kind of experiences with Dylan's leg.

We were coloring this morning and at one point, Kaden put a crayon between his toes. He was pretty proud of himself and showed me, to which I couldn't resist taking a quick picture of his cute smile on my phone and telling him that was pretty cool!

Dylan wants to be JUST like his big brother. So after seeing the reaction Kaden got from having a crayon between his toes, Dylan, too, wanted a crayon in between HIS toes. So he picks up a crayon and tries to put it between his toes. Not a big deal, you think. He does have toes that he can put a crayon between, after all. However, Dylan decided to try to put the crayon between the toes on his prosthetic leg. (I attempted to take a picture of him trying and caught a little bit of his confused look)

He looked over at me with this confused look on his face like, "why can't I get a crayon between MY toes??" It was sad and so cute all at the same time. Cute because he truly doesn't look at his prosthetic foot/leg as any different than his other foot/leg. He heard crayon between toes and he didn't second guess that he could put a crayon between ANY of his toes. Sad because with this attempt, it was a slight fail.

I let him try a couple times to see if he'd figure it out himself and then helped him put some crayons between his toes on his other foot and all was well. :)

We went to the park the other day. After playing on slides and swings, we walked over to the baseball field. There were a few puddles of mud, but I didn't think much about it. Until, of course, Dylan ran right to the puddle of mud and sat in it before I could stop him. :)

No worries...a little mud never hurt anyone. I figured it would dry quickly and we could brush it off and just take his pants and shoes off before getting in his car seat when we were ready to go home. It did dry quickly and they played a little longer and right as they were running back to me so we could leave, Dylan got a little too close to the mud puddle and slipped into the puddle, falling on his side and bum and completely covering both shoes, legs, shorts, hands. He was one messy boy! So I used the two wipes I had left in my purse (why is it that you always run out of wipes when you need them the most?) and cleaned him up as best as I could. I took all his clothes off, as well his leg and we headed to the car. My hands were full with Dylan and muddy clothes so I asked Kaden to carry Dylan's leg.

As we were walking back to the car, I turned around to see why Kaden was walking so slow and he was crouched down making Dylan's leg "walk". hahaha. Cracked me up!

Fun times!! :)

Tuesday, July 17, 2012

You Are Special

One of my absolute favorite "children's" books is You Are Special by Max Lucado. I say "children's" because the story is for much more than just children, but I suppose it's considered a child's book. If you don't have it in your collection...go get it! :) Anyway...I've loved this book from the first time I read it, long before Dylan, or even Kaden, was born. I loved the message and the sweet spirit felt in the book (as with many of Max Lucado's books).

At the time Dylan was born I was in charge of a group of girls, ages 8-9, in my church. We held bimonthly activities outside of church where we taught them gospel principles or life principles through various activities,  lessons, crafts, etc. About a month after Dylan was born, before we had shared with anyone Dylan's situation, my sweet friend, Amy, who also was in charge of this group of girls with me, suggested that we read You Are Special at the upcoming activity and get some gold star and gray dot stickers and put them on the girls as we read the story and then ask questions and open up conversation about the meaning of the story and what we can learn from it. I thought it was a great idea, because A. It was an easy activity and I didn't have to plan anything, and with a newborn baby, time to plan an extensive activity was not a reality :) and B. It had been awhile since I read the book, but I knew I loved it and the message and thought it would be a great message to teach the girls.

The week of the activity had been a rough one for me, like many of the weeks after Dylan's birth. I was emotional all week. The reality of Dylan's situation was still so raw and I found myself crying about it often. The day of the activity was no different. I hesitantly showed up to the activity to fulfill my responsibility. Amy asked if I would read the story while she went around and did the stickers. As I read the story, for the first time since Dylan was born, the story had a whole new meaning to me. Maybe not a whole new meaning...but it all of a sudden had an extra special place in my heart. A place that was reserved for Dylan and for the inevitable struggles he would have to face in the future. I fought back tears as I read the story to my class of girls that night. I wanted to grab each of them and make sure that they knew...A. how special THEY were in the eyes of our Heavenly Father, no matter what anyone else thought or said...and B. to NEVER, EVER judge someone because they were different.

My biggest fear and worry with Dylan THEN and NOW, is how his situation may affect him emotionally/mentally/spiritually. I know he'll be okay physically. Especially seeing him excel so awesomely after just a few short months of having his first leg, I know he'll be able to do anything he puts his mind to physically. And I'm sure he'll be okay emotionally/mentally/spiritually as well. But I know there will be times when he will question why he is the way he is or when kids (or adults) will make comments that might hurt or act a certain way because he is "different". It's inevitable. I pray that when those times do arise, that I will be strong enough to comfort him and give him the strength that he will need. I pray that HE will have the strength that he will need to get through those times, by having a true understanding of who he really is...a son of God...and that no matter what anyone thinks or says, he is PERFECT and SPECIAL in God's eyes, in his mother's eyes, and in his father's eyes. He's absolutely perfect just the way that God made him!

This morning I was reading with my boys and they were taking turns choosing books. Kaden chose "Punchinello" (that's the main character in You Are Special...side note, Kaden used to call him "Punch-a-pillow" hahaha!!) so we all sat and read it together...for the 100th time. And once again, I got emotional reading it....for the 100th time. :) I'm fairly confident I will get emotional reading it for the next 100 times too. But it's a feel good, inspired emotional. I'm so grateful for the knowledge of a loving Heavenly Father. I know he created each of us...each of our strengths, each of our weaknesses, each of our talents, each of our differences. We are all so unique and so beautiful and so perfect in His eyes.

I just wanted to share a few of my favorite lines from the book of Punchinello's conversation with Eli (the woodworker who made him, can be likened to God, the creator of mankind).

Please remember today (and always)...YOU ARE SPECIAL...and so is the person sitting next to you or walking by you, so make sure to treat them as such. :)

And while we are talking about how great Dylan is doing....had to share some pictures of Dylan running around yesterday.

And a cute video showing just how good he's gotten...and how a couple falls don't stop him. :)

And lastly, just because this picture cracks me up. :)

Sorry to have gotten so wordy...anyone who knows me knows I have a hard time keeping anything short and sweet. :)

PS...we have an amputee clinic today and Dylan will be getting fitted for a NEW leg. Leg #2 in just 5 months. Eek...hopefully this pace slows down a bit!! :)

Saturday, July 7, 2012

Meeting Another FH Family

Through FH and the support groups I am apart of and also through this blog, I have had the chance to become close friends with many other women/mothers who are going through the same thing as me and my family. I've become close with some who have been through it all already and have been there to answer questions and offer support. A few of us went through amputation surgeries around the same time and brought me so much comfort during some of the hardest moments we've experienced thus far. I've also had the chance to become close with some new moms who are just starting their FH journey...I hope I have been a source of comfort to them. Most are women and families whom I have never met in person and may never meet (although I would LOVE to!), but will be friends with them forever. I have had the chance to meet a few families in person and I treasure those families and the relationships we have built and continue to build.

Karin contacted me through email after she found Dylan's blog (I'm not sure how she found it). She was pregnant at the time and they had recently found out at one of their ultrasounds that their new baby had FH. We emailed back and forth throughout her pregnancy and through our emails we found out that we lived in the same state. Just a few hours away from each other. We were able to refer them to Dr. E (Dylan's surgeon) and after they visited many surgeons and did their own research, they too chose Dr. E to care for their now born, little baby boy, Jack. So they come into our area every once in awhile. We've been trying to set up a time to meet up and haven't been able to do so, until this past week.

Karin was going to be coming into our area for some shopping with her mom and baby Jack. Bryson happened to have the week off and we all met up together for lunch. It was SO great to finally meet Karin and baby Jack and it was so great to meet Karin's mom, Joanie, as well. It was so nice to be able to answer questions and for them to see how great Dylan is doing. Baby Jack is SO cute and I loved seeing his little foot (made me miss Dylan's little foot). :( His little leg looks so much like Dylan's did. Jack also has a short femur, like Dylan. Their cases are pretty similar, it's crazy.

Anyway, I'm so glad that Karin found our blog and that we've been able to connect. She is an amazing mom and woman and I know we'll be great friends for life. I feel for her and her family, because I know that what she is going through right now is NOT easy and I wish I could say something or do something that would help take away the anxiety and pain. All I can say to Karin and to anyone going through DOES get DOES get easier. I know it's hard now and it'll be hard for awhile as surgery approaches and through surgery and recovery, and I'm sure there will be moments in the future that will be hard too (for all of us)'s definitely not easy, but it will be so worth it. Bryson and I think back to how hard those times were, how hard the decision was to amputate, how hard surgery and recovery were, how emotionally hard those months were after his birth and leading up to surgery...but seeing Dylan running around now and we KNOW without a doubt that it was the right thing, that it was all worth it, and we don't look back. Dylan is going to excel in this life, no matter what life throws at him...he was born to. And so was baby Jack...and baby Beau, and Anna, Reagan, Anna, Jack, Hannah, Noah, Laura...every FH child. We have little fighters among us. :) I truly believe they were prepared for this life and for this trial and they have a purpose here that is so much more than we can imagine.

Joanie (Karin's mom) brought her camera and I'm SO glad she did. She is as obsessed with taking pictures as I am, so I'm so thankful she was there to document our time together, since I was to busy talking and chasing kids. :)


Cute boys!!

We spent some time outside talking after lunch while my boys played in the water fountain. :)

This picture cracks me up. I LOVE the group shot...but between my half opened eyes and Bryson's overzealous smile, we laugh whenever we look at it. At least Karin and Jack and my boys look good! :)

Can't wait to meet up with you again, Karin. And thank you again, Joanie, for all the pictures!!