Friday, September 21, 2018

Another year, another pair of AFOs

Hailey had trouble walking after her very first #ataxic episode when she was three. The damage to her brain from #Leukodystrophy has caused a permanent result in Hailey requiring assistance to walk independently. She has been wearing AFOs (ankle, foot, orthotics) since she was 4. She first got them right before her Make a Wish trip. There are some shoes that are especially made for AFOs, but the price is a bit ridiculous (as with any special needs items) since Hailey grows so fast. We have found that New Balance shoes that are in extra wide will fit over the AFOs but they are actually 2 sizes larger then Hailey feet without braces. First Try and just imagine walking comfortably in AFOs that are made of hard plastic for over 12 hours in a day. Then imagine wearing shoes that are 2 sizes too big for you on top of hard plastic that encases your feet? Sounds like a nightmare right? This is what Hailey endures to be able to walk independently. She isn’t the type of kid that wants to depend on her wheelchair but when the pain is too much she will comply. We found that Zappos.com will carry the extra wide shoes online since the New Balance stores NEVER have enough in stock. Zappos For Good shoes can be found on the website (from a desktop, I couldn’t find it in my mobile device) and while those shoes might work, what 10 year old do you know wants plain black, brown, or tan orthotic shoes? While shoes aren’t the only things that aren’t adaptive to medically fragile or disabled children, these extra wide shoes are a start. When Hailey got her pacemaker she couldn’t lift her arm over her head to put on a shirt, and button down shirts got in the way of her g-tube. Even most pants get in the way or press against her g-tube. She’s never worn a real pair of jeans/denim before, not over AFOs. She has a long torso so she needs longer shirts for g-tube feedings so her stomach isn’t exposed, but when you buy longer manufacturers assume you need wider as well and that is not our need. Then socks, lucky we’ve been able to find fun socks to wear with AFOs, but we need more that aren’t soccer socks that are long and colorful. Thank you to Sasha for helping w/shoes.
#zamystylemyway