Overcoming fear and taking first steps again.

I just love this smiley face. This past week Alex got her new removable walking cast that she was measured for over two weeks ago. She has been looking forward to trying to walk again but was also very nervous about what it would feel like. When we had the fitting for the brace, Ms. Melissa, gave her an ipad with hundreds of cast patterns to look through and pick from. Thankfully it took a while to get the measurement done because it took every bit of that time for her to choose the perfect one. She settled on this one and when she got it she said how happy she was that she chose it. At one point she laughed and said the only problem is that she is afraid Boone will try to lick the ice cream cone and donut on the cast!! Alex had everyone in the room laughing at this comment. Thankfully this has not happened yet but it is still a very real possibility that it will at some point. She also thought it was funny that her shoes are different sizes now. The left shoe needed to be one size larger than the right to fit over the brace and be comfortable for her. She is walking well even with the shoe size difference. They were able to wedge the heel enough to match her leg lengths as well which is helpful for her in walking. As of the last time she was measured there was a 6cm leg length discrepancy due to the Vascular Malformation having damaged her growth plate in that leg.

When she first got up to try taking some steps she was nervous and very timid but she relaxed pretty quickly and started to do much better. It only took her about a day to get much more confident and be moving around smoothly. She is doing so well with it and we are really proud of her. She is supposed to be getting arm crutches in the next couple of weeks which will help give her more options for mobility as well. She has been watching videos of people who are full time crutch users and all the tricks they can do and how awesome their balance is. I love seeing her watch a video or see a photo of someone with limb difference doing something neat and hear her say, "I could learn to do that too". She is inspired by watching others get around and not be stopped by their challenges.

In the office they had a book about Winter the Dolphin that we read while we waited. Alex said her favorite part of the day was seeing the big picture of Winter with her prosthetic tail. Alex's brace was made by Hanger Clinic, and Hanger is who made the dolphins tail.

Alex said, "they made Winter a tail that helps her swim and they made me a brace to help me walk."

On the way home from this appointment we stopped for a donut. Appointment days are looked forward too even when there is some hesitation or anxiety about the visit, because she loves the treats on the ride home. When this journey first began, almost a year ago now, we struggled some with fears of spoiling her too much with all the treats and special gifts. We were also unsure how all of these things especially in the midst of the stress of life would affect the other children. I am thankful that we were able to talk to other parents with kids who had gone through similar medical situations, not necessarily with this disease but other illnesses, who were able to help us think through these things and who have encouraged us every step of the way. They helped us to see that yes, in some ways children in these situations do get spoiled but these children would also give it all up to not being going through their medical challenges. The child sees it for just what it is, encouragement and motivation in the struggle.

Alex challenges us every single day to look for the bright side of things. This video makes me smile every time I watch it.

I have to admit, I cried a little bit watching her take the first real steps she has taken in a long time. She has hopped, used the walker, crawled, and scooted and not let any of those things stop her from getting where she wanted to go but she has certainly been eager to get back to using two legs. There were certainly many emotions attached to watching her take these steps. Because of the affects of the disease to her entire femur she still has to be careful because the top of the femur is not protected by this brace. The only way to protect the whole diseased area would be a spica cast and since this is not just a short recovery time everyone agrees that kind of cast would not be in her best interest. This cast or brace is removable so she can take it off to shower or when she needs to scratch, which if you have ever been in a cast before you know how frustrating the itches under can be. She can also remove it for strengthening exercises she does daily and for her lymphatic massage sessions. Due to the disease and lack of use her leg has a significant amount of atrophy so we combat that with exercises she is able to do without risking damage to the leg. This brace supports and stabilizes the leg so that she is safe to bare weight and be more active than she could before.

As we have had more pretty weather the kids are all spending more time outside so it is good for her to have something that allows her more freedom to be with them. She does get sad when she sees someone on a trampoline. Our other children have been really sweet about not spending too much time on our trampoline and making sure to do things that Alex is able to do with them but sometimes they do jump and it is hard for her. The trampoline has always been one of her very favorite forms of exercise and entertainment so it has been a loss to her. She is pretty easy to redirect when she gets sad about these things and we find something that she can get excited about and she moves on. She is a truly amazing five year old. God made this girl fierce!!!