.dietzen dictionary: orthotics {AFO's}.

Both Parker and Lane wear something called AFO's, which I have come to learn are foot orthotics. The dictionary definition is as follows:

AFO= (ankle foot orthotic) is an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system

These are what Parker's AFO's look like. When you get custom ones, they let you pick the design and colors.

 

When I first joined the Joubert Syndrome facebook group, a bunch of the parents were talking about getting AFO's for their children. I had no freaking clue what they were talking about and started to frantically google what the heck these initials stood for. Once I figured out that they were foot braces of some sort I talked to Parker's physical therapist about it.

Because Parker was not weight bearing on his legs much, we waited a little while to get him fitted for his, however, in hindsight I should have gotten him fitted right away. When Parker stands, his ankles and feet turn inward and he is very unstable. Because of the awkward way he bears weight on his feet, it makes it much harder and as a result he was very hesitant to stand.

Once we got him his orthotics, I immediately noticed a difference in Parker's ability to stand as well as his confidence in standing. I think once he felt that stability, he realized that he could do this on his own. Parker didn't get his first pair of AFO's until he was about 2 1/2 but we got Lane his first pair when he was about 1 1/2 years old.

You can see Parker's foot curling and leaning inward forcing him to have a wider stance while walking.

We get them custom casted for their AFO's because they are much more tailored to the specific needs of the child and help in the specific problem areas. Lane tends to be more flat footed without much of an arch and Parker has a high arch so his feet roll inward. With the custom orthotic it targets that specific area and makes it so they are both standing with correct form and giving them the support they need.

One of the major benefits to having them wear the AFO's at such a young age is not only helping them stand and walk, but to shape their feet and train their bones and muscles to have correct form and to grow in a way that will create the most stable base for them. With Parker wearing them everyday now and walking, I can notice a huge difference in his feet and posture when he is not wearing them. Before I could tell such a difference when he was wearing them versus not wearing them, but now I can see the muscle strength and way his body has learned to have correct form even when not wearing them.

Parker's posture and stability are noticeably different while wearing his AFO's in the picture above.

These are not something the boys will always have to wear, but for now it is a major asset to helping them grow and develop. They will most likely be wearing them for quite some time, but they help so much that neither of the boys have any issues with me putting them on and having to wear them. In fact, if Parker knows he is going to be standing or walking, he will ask me to put on his orthotics. He knows how much they help and likes that extra support.

At first this was something that I struggled with. When the boys wear them, people can see that there is a special need. It is something that you can physically see that shows their difference. We get more stares and more questions, especially in the summertime (when they are more visible) but it has actually opened a lot of doors for me to educate people on what they are and how they help.

You can see the tops of the AFO's here as well as his thera tog suit (I will talk about this on another post)

These have been some of the biggest contributors to the boys gross motor skill development and I am so thankful for their current therapy team that encouraged the custom orthotics and has encouraged us to make wearing these a part of our daily routine.