Hard Times Lead to New Brace (Mitchel AFO)

In the last post, I mentioned we were having a hard time keeping Cason's left foot in his shoe. As the doctor asked, we "exhausted" (literally!) all of our options to keep the shoe on.

 First, we tried tape. Yes, actual [masking] tape. This didn't really seem like a friendly option. Next, we found the option that seemed to work the best…. wrapping his shoe, ankle and leg with a sticky first aid wrap (like Johnson & Johnson's First Aid Secure-Flex Wrap) helps keep his foot in his shoe. One roll lasts about a week for us. The only problem with this is that each wrap we cut from the roll only lasts for a couple of uses, its wasteful and its expensive (about $5/roll at Target. Target brand also works great, is just a bit cheaper than the name brand and comes in a variety of fun colors).

We eventually gave up on it all, keeping our fingers crossed he would not move around so much that it would make him come out of his shoe…it has been a hit or miss each day.

(Another idea we thought about was getting regular fabric first aid wrap or some other type of fabric and sewing on velcro to help secure his shoe in place but never got around to trying that option out.)

 A couple of weeks ago, I finally had the nerve to make a second request for a new style of braces for Cason .  (The Mitchel AFO bar and shoes…especially since they come in colors now! I contacted them directly and found they would sell them to me without a doctor’s prescription. I never got a clear answer on whether or not an insurance claim could be filed or what the out of pocket cost would be…but that doesn’t matter at this point). I left a message with the doctor stating that I would really love this new set-up and that I would probably order them on my own if they were to deny me once again. Luckily, they were very receptive and the shoes and bar were ordered almost immediately...We just had to schedule an appointment with his orthotist to be sized.

We met with the orthotist last week and are expecting to have his cute little blue shoes and new bar in any day now. He really needs them…he is still in his original shoes and his little feet have grown so much they are nearly exploding out of them (even so, his left foot is still coming out!).
Last week, we also had a check-up with his doctor. Once again, he said his feet were looking great and to keep up the good work. He recognized that there is some difference in the left and right feet but that they are not big enough differences to be concerned over. He joked that the left foot was “supposed to be the good foot” (he did not have a tenotomy performed on it…only on his right) but agreed that maybe it has changed a bit due to it coming out of his shoe so often.  Our next check-up will be in 6 months.

One more thing…Cason has become a mini star on Facebook, Twitter and Pinterest since miraclefeet posted a picture of his custom bar bumper and this blog address on each social site. I’m most excited about all of the “sharing” of the photo and the talks it has initiated to spread the word about the great work the organization is doing…but also really proud the idea was recognized and think its cool that this blog may reach more families in need of a little guidance. 

Just a reminder that I did not create the bar bumper nor does miraclefeet offer them. You can order your own custom bar bumper by clicking HERE.

Brace - Naps & Nights!

(well, almost!…at least the "all-day"- wear)

Its a great day in our household! Cason has been wearing his brace for 3 months/23-hours a day. We had a quick visit to the orthopedist this morning; he said his feet looked amazing and has no worries. Cason can now wear his set-up only during naps and nighttimes (with a 12 hour/day goal). Yay! I know Cason will feel free but mom and dad (and grandparents, too!) are really looking forward to this, too!

A little too late (just because Cason won't be wearing his set-up in public much anymore), we ordered a custom Bar Bumper to replace the foam we had wrapped around his brace.  The primary reason is to help cushion the bar itself but we also wanted to ignite others’ curiosity when they see us out so we chose to have miraclefeet.org put on it. We're hoping people will see this and lead them to the miraclefeet website. Hopefully some giving hearts will be inspired to donate to help continue the work that they do. Not only do they accept monetary donations but they also accept used braces to be donated to children around the world!

Almost done with 23-hour brace wear

Today is January 19. Cason has been in his brace for just over two months. His last check-in with his doctor was a month ago in December. The doctor said his feet were looking great and he had no concerns! Yay! Our next appointment is February 15 and then he can hopefully start wearing his bar only during naps and nighttime.

We have had a time with his left foot. It constantly comes out of the shoe...as much as 15 times a day! Its frustrating to put the shoes on and a minute later, he has kicked himself out of his left shoe. The right shoe never ever comes off on it's own. We've tried putting double socks on, tightening the shoe laces and strap but nothing works. A few weeks ago, we visited his orthotist for help. She added a little extra padding under the tongue of his shoe but it has not helped at all. We have a meeting with his orthotist again this week to have more padding added. I asked his doctor if we could get a whole new set-up (possibly the Mitchell AFO Bar) but he said we had to "exhaust all other options" first. (I will have to say I like his Horton click-bar he has now. With this, we can remove the bar for clothes and diaper changes without having to take his shoes off).
Its frustrating throughout the day but at night is when it makes me worry. There have been several times when we have woken up and his left foot is out of his shoe. The worst part about this is that his right foot is still in the shoe and often twisted with the bar still attached. I worry that he could really hurt himself this way.

Other than the frustration of his left foot, everyone is managing really well. He doesn't mind wearing his brace and shoes at all. He even seems to relax a bit more when he is wearing them. He will definitely have strong hips and legs…he has not problems moving and kicking when he is wearing it all. He even sleeps with his legs in the air and the bar resting on his head sometimes. My dad helped us to wrap the bar in foam tubing to cushion it a bit. It keeps him from hurting his face and helps us from getting hurt when we're in his way!