As we continue aggressively (yes, aggressively) removing oxygen from our lives, we are adding in some new equipment for Owen. This morning, Kellen, Owen and I went to Gillette and had the final fitting for Owen’s Ankle Foot Orthotics (AFOs). If you’re not familiar with this type of brace, I’ve taken a lot of pictures from different angles so you can see what they look like and have answered a few of the questions that I’ve received about why Owen will be using them.
What is the purpose of AFOs? AFO’s are used for people who have impaired ankle function. In Owen’s case, the doctor is hoping that by giving him more ankle support he will better be able to control his body for walking. To walk, you need to control your hips, knees and ankles at once. She feels by cutting it down to only two of the three, Owen will start walking sooner. Also, Owen is showing a tendency to come up on his toes, especially on his right side. AFOs prevent walking on tip toes.
Does Owen have Cerebral Palsy (CP)? Owen’s development team is reasonably confident that Owen will not have a CP diagnosis. At this time, his muscle tone is “essentially normal” in all four extremities. He has mild increased tone in both of his hamstrings and ankles. Also, his feet are flat during standing, and as I mentioned above, he favors his tip toes at times. His doctor feels that by getting his earliest walking in the correct position, through AFO use, there is a chance that his mild tone issues will improve, or at least, not get worse. She keeps saying, “Owen is a moving target”, which means that she doesn’t feel his tone is fully determined yet. She is confident that Owen could walk without AFO’s but we are choosing to be aggressive now, in hopes that he may not need AFO;s for life. From a development and neurological standpoint standpoint, Owen has been diagnosed with PVL, Muscle Weakness, Global Developmental Delay and Impairment.
What is the Process for Getting AFO’s? In our experience, molds were created through briefly casting the foot, ankle and shins. As shown here.
I was able to pick a fun fish print from a book of many options. I thought it would be good for summer (assuming it ever gets warm here). Over the last two weeks, the molds were used to make custom fit, plastic braces for Owen. Today we went back and the braces were tried on and the final cuts were made and the straps were added. In all, the appointment was an hour and forty-five minutes because it took about one hour between trying on the braces and making the final adjustments.
What are Owen’s first Impressions of his AFO’s? Owen has been doing really well so far. Within 5-6 steps of hand held walking he had adjusted to the braces and walked comfortably. When we got home, he crawled and cruised with no complaints. We will work him up to wearing the braces for longer periods of time, but for now, we are starting at 1-2 hours a day while he’s playing. The goal is for him to wear the AFO’s during most of his periods when he’s standing, cruising or working on walking. He will not wear them for sleeping or rest. We do need to get to the store to buy some more socks that will go higher than the brace. Amy, mom to the adorable Ailyn Rose has recommended Target store brand socks that are $1.50 each. That’s a much better deal than the $15-20 AFO specific socks on the market. Old Navy Triple Roll Socks are another favorite for Amy and Ailyn.
Being only a few hours in, I’m far from an AFO expert, so, PT’s and other’s with AFO experience, please add any thoughts or wearing advice that you have. As we prepared family for Owen’s braces, I struggled to find a page that talked about AFOs in lay terms or showed pictures from a lot of angles, so I wanted to make that available on ANRC, but I know there are readers with much more advice than I have, so please share! AFO’s are relatively common in the preemie world and we preemie parents are vultures for information.