Sawyer's New Leg

One reason I started this blog was to share our families journey with Fibular Hemimelia. My hope is to help others who are on our same path. It was a scary place when we started, but now it's just apart of life. A pretty good one at that!

Sawyer will be four in July and we are on leg number four. Ideally, he will have one leg per year. Over the twelve months there are adjustments made to accommodate for growth. Adding length, changing feet, shaving down the insert, switching leg socks are some of the changes that can be made.

Leg number 4 is the first with a pattern. You have a choice between flesh color or adding a cotton fabric to the outside. In years past we picked flesh tones. To feel normal about a situation that was anything but, felt comforting. It's was not always an easy conversation to have with people without crying in the early days. Looking back I wish I could have told myself it's going to be ok. Doctors told me, but I probably needed to hear it from another mother. Let me tell you this kid does everything. He's played soccer, is in gymnastics, he runs, jumps and climbs. Sometimes things are a little harder or he has to figure out his own way, but he does. It's been so rewarding watching Sawyer grow and thrive. This playful pattern of brightly colored monsters was his choice and so perfect for him.

Week 1:  The prosthetist makes a mold of the leg. They use a casting material to get the exact shape of the leg to fit the prosthetic to. They also measure his foot on the opposite leg to get a matching one for the other side.

Week 2:  Using the casting a clear mold is made to visually see how the prosthetic will fit.

Week 3:  Dynamic alignment. A foot is added to the end of the clear mold and the prosthetist watches to see how Sawyer walks in the new leg.

Two weeks later we have a new leg. I'm so happy with the way it turned out and I can't wait until summer for Sawyer to show it off! He amazes us all the time and I'm excited to see what the year has in store for us!

Oregon Playgrounds and a New Leg

Life has been insanly busy. Hence the lack of posts. We are working on our third move this year, but thank goodness this one is for good! I'm so excited to share the progress on our house, but first an update on Sawyer.

Sawyer's favorite activity by far is swinging. He shouts "yay, yay!" and loves daddy to push him as high as possible. He also discovered if he kicks his legs enough he can knock off his prosthetic...making it fly across the park. Bright side...it's one way to start conversation with new people.

Sawyer is adjusting just fine to this new life of ours. We are all really enjoying all the lush parks and Sawyer goes crazy over the playgrounds. In July he will be two! I am planning a small, but fun filled birthday. It's crazy how much he is changing. He told me one night when he would not go to bed "I don't want to go to bed...I'm not tired!"...WHAAAATTT?? I freaked out. It was hard to make out, but he totally said it. No more sentences since.

A shoulder ride on dad in Tualatin Hills Nature Park.

Murase Plaza at Memorial Park
We stumbled on this playground in Wilsonville. There was a huge red barn, gingerbread house, and swings to play on. It also has an old barn that would be so pretty for a family photo.

Sawyer is obsessed with the color red. Naturally he was drawn to this huge red lady bug. I kind of want one in my backward.

Sawyer got his first leg when he was 12 months. At 22 months there is a significant height difference. His first prosthetic is pretty basic. The foot was glued onto the leg so making adjustments meant adding onto the bottom of the foot. The brown cork material lifted him to the proper height. His new leg really raised Sawyer up. It took a while for him to get adjusted to the height difference. When he was wearing his old leg he was starting to bend his full leg to shorten himself to be at the same level. Once he put on the new prosthetic he was walking on his tippy toes. To him it was too tall, but it was actually the correct height. After a few days he started walking evenly on both sides.

I adore this little man.

Physical Therapy - California Children's Services (CCS)

Sawyer is 17 months and has recently started walking. Around 15 months he is starting to stand on his own, cruise, and walk with us holding his hands, but he needed more assistance to get him to walk on his own. At his one year checkup with our Orthopedic surgeon he recommended enrolling him in physical therapy. Every state has a program setup for children who qualify to see a physical therapist. In California it's called California Children's Services (CCS). Once your child is approved they are eligible for care until the age of 21. All of this is free of charge! Yup, you heard that right...FREE!

From my own experience this is a long process. My doctor told me from the beginning to make sure to followup as many times as needed to keep the ball rolling. We started by filling out paper work coinciding with our doctor to start the case. About two weeks later I was resent the paper work to fill out again. After I turned everything in I gave it a good week and called to make sure they had everything they needed from me. I was given an update at that time and it looked like we were just waiting for the therapist to decide if Sawyer qualified. I ended up calling two more times to push things along. Everyone I talked to was super helpful and nice. It took almost two months total to hear back, but Sawyer was approved! It was a really happy and tearful moment. Getting one on one attention is just what Sawyer needed.

We met with the physical therapist for the first time when Sawyer was 14 months. He did some activities with Sawyer to see how he moved and what he could do. We made goals of standing and walking. They look at a 6 month period of time if they decide therapy is needed. If they don't think therapy is needed they meet with you once a year. He recommended twice a week for 45 min sessions. It took another month to get a prescription over to our doctor and for the final go ahead. I'm really excited for Sawyer and super thankful this is a service the state provides. Having a child who needs more then the ordinary is costly. Any help is always appreciated. Plus, Sawyer LOVES going to therapy. To him it's playtime and he usually does not want to leave.

I'm writing this post for parents of children with Fibular Hemimelia (FH), but I also hope that it can help others as well. When I first learned about Sawyer's condition I searched the internet for any information I could find. Hearing from other parents in our situation helped me the most. I strive to do the same.

----------------------------------

I want to end on a light note. I think it's super important to find humor in your everyday life. Fibular Hemimelia is no exception. In our everyday conversations I find myself pausing and thinking...did I just say that? Here is a list any parent with a child with a prosthetic can relate to...

"I can't find Sawyer's leg"

"His leg is in the baby bag, my purse, _____________ fill in the blank"

"Can you pick up Sawyer's leg it dropped under the table" Said frequently at restaurants.

This picture is a classic Where's Waldo moment. Can you spot Sawyer's leg? Apparently he thought mommy needed help cleaning out his baby bag.

Sawyer's Style - Toddler Boy Fashion

I remember the day I found out I was having a boy I was overwhelmed with joy, but also slightly sad inside for all of the girly fashion moments I would not be having. Tutu's, headbands, and pink everything was not in my forecast. There are so many cute styles for girls, but boy's fashion never really stood out to me. That is until I had a little man of my own. When I started paying attention I realized just how many options there are for boys. You just have to think about it differently and it starts to be a lot of fun!

Fashion does not have to be crazy expensive. It's hard for me to justify spending a ton of money on clothes that Sawyer will grow out of in a short period of time. I hunt for deals Sublime shirt, take all the hand-me-downs I can get DC Shoes (score of the century similar found here), I hint around to grandma and grandpa's what "Sawyer" likes, and I embrace whatever comes his way. It's all another fashion moment. I also spend money here and there on statement pieces like these gray jeans (similar found here).

This boy changes everyday. One day he won't let me dare put a hat on his curly haired head, and now he points to his hats and insists to wear one. I secretly am dying inside with pure joy at his newfound fashion moment.

Leggings // Hat from Target (no longer available, but I'm all about this one!) // Shirt from Old Navy (no longer available, but this shirt is a great score! // Black low top chucks On sale with free shipping now!

The tighter the pant, the better! Well in our case this is true. Sawyer enjoys pulling on and off his prosthetic (about 5,000 times a day), but when I put skinny jeans, leggings, or jeggings on him it's much more difficult. With that said…Sawyer rocking girl jeggings (cause who is gonna know, but me and well now you). I still think it's a fashion must for boys of a certain age.

For more Sawyer Style click here or follow me on Instagram.

If the Shoe Fits

The winner is....

It's a three-way tie! I couldn't pick just one pair. A boy needs his options. Thank you so much for all the responses on the blog and Instagram. They were so much fun to read and see everyone share in our joy!

Last week Sawyer received his first prosthetic. The prosthetist put Sawyer's little leg on and had me stand him up, hold his arms, and help Sawyer take his first steps. It was such a happy and unforgettable moment. At the end of his walk Sawyer started bouncing up and down with excitement. He was so proud of himself.

Side note: for parents of a child with a prosthetic looking for shoes. Although it would seem velcro would be the way to go for a baby or child they actually proved much more complicated then laces. Sawyer's prosthetic foot is very basic. It's only meant to help stabilize and allow him to get around. It's a bit bulky so most shoes with velcro are very difficult to close. Laces allow the shoe to form around his foot. This will all change as Sawyer grows and his prosthetic gets more advanced.

We are so excited for what the coming months will bring. I can hardly wait for Sawyer to start walking. On second thought, maybe I can. I really need to get on baby proofing our entire home...stat!

WE NEED YOUR VOTE!

I can't put into words how excited I was to buy Sawyer's first pair of shoes. So, I will just show you with the photos below. Up until now Sawyer could only wear socks...so this is where my excitement stems from. Well that and it's SHOES...tiny little BABY BOY SHOES! Yes, I bought all of these, but I will only keep one or two pairs. Leave a comment and let me know which pair you like best. Stay tuned for the results.

 

Red Converse//Saucony//Pumas//Similar Brown Stride Rite//Multi Color Stride Rite//Black Converse

Our Story - Sawyer's Journey

This has been one of the most trying years of our lives. Having a baby is not an easy task and our story does not end there. During my second trimester screening we not only found out we were having a boy, but we were completely devastated to learn there was an issue with his development. I will never forget the doctor entering the room asking the nurse "Which side?" He didn't have to say anything to us; the question and his tone said it all. Something was wrong. I want to share our story of Sawyer's journey. I hope to bring awareness, and help other families in similar situations.

We found out over the remainder of my pregnancy that Sawyer had a problem with his right foot. Our doctors did many tests while I was pregnant to find out what was going on, but could not give us an exact answer. It was not until Sawyer was born and checked out by many specialists that we had a conclusive diagnosis. Sawyer has Fibular Hemimelia, which is a longitudinal fibular deficiency. That's a lot of big words so let me break it down. You have two bones in your lower leg the tibia (large bone) and fibula (small bone). A person with Fibular Hemimelia is missing part of or their entire fibula. In Sawyer's case he is missing part of the fibula, which resulted in partial foot growth. Our doctors could not tell us why or how it happened, but we do know it's not generic. In our case it was also an isolated incident meaning it does not affect anything else mentally and physically, which we were very thankful for.

There are two avenues for treatment: leg lengthening and foot reconstruction or amputation and prosthesis. In Sawyer's situation he did not have a weight bearing foot so there really was only one option for us. At the age of eight months Sawyer had a Boyd amputation. He is left with part of his heel and will be able to walk short distances without the use of a prosthesis. Currently we are in the process of getting him fitted for his first prosthetic leg. The goal is to have him up and walking on schedule with other children his age.

Everyone deals with things differently and I really struggled with the news. When I was pregnant I cried on my way to work most mornings. Once I had Sawyer I cried when I thought about how unfair this all was. He is an innocent baby boy, why him? I was very lucky to find a wonderful psychologist who helped me with my feelings. She told me what I was going through is similar to mourning the death of someone. The loss of the life you thought they would have. What helped me most was talking to family, friends, and researching what was going on with Sawyer. I found salvation in hearing other family's stories. It was one reason I decided to tell our story on this platform. I believe it's not something to be ashamed of and have come to the point where I was ready to tell our story. We are all different in our own ways. Although some differences show more on the outside then the inside it does not make us any less of a person. Sawyer is an amazing little boy and has a very bright future.

From left to right:  This picture was taken soon after Sawyer's surgery at 8 months. Sawyer's cast went right past his knee and his leg was bent to keep the cast from slipping off. As you can see it did not set him back. He moved, played and adjusted to the cast. The center picture is at 9 months and the image on the right was taken at 10 months when the cast was off.