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!

Sixth Set of Casts & New Horton Click Bar/Brace

Casts worn October 25-November 15 (3 weeks total)

After Cason's tenotomy, he had a full regular cast applied to his right foot. On his left foot, he had a "half" cast that stopped right below his knee. The doctor explained it was like a "place holder" for the next three weeks while the right foot healed.
Instead of changing casts again in one week like we had been doing, he wore the casts for three weeks.

Top view of Cason's feet after his 6th set of casts were removed. Looks perfect!

Today is November 15. Cason is officially through wearing casts (so long as we 'follow the rules' wearing the brace). He now is wearing his Markell shoes and Horton click-bar! The shoes are definitely not my favorite. They are white leather and look a little old fashioned. They have openings in the toe and at the heel. The openings help to position is foot the right way when the shoes are put on and it helps us keep an eye on them to make sure they don't shift throughout the day. The bar only comes in purple. I don't really mind it but wish we had a more neutral color to match more of his outfits!

Fifth Set of Casts & Tenotomy

Casts worn October 18-October 25 (1 week)
Tenotomy performed October 25

You can see the drastic difference in the angles of each foot.  His left foot has done excellent. It is in position to start wearing his brace but that comes in a few more weeks….

I didn't get any pictures of his feet after the casts were removed but his feet didn't look any different than last week.

Cason had a tenotomy performed on his right foot on October 25th, the day his fifth set of casts were removed. His right foot could not be manipulated any further by wearing casts. We are thankful that he only needed the procedure done on one feet and not on both. Before the procedure was done, he was "fitted" for his braces and shoes. His shoulders and feet were measured so that everything could be ordered and ready for us in a few weeks!

The tenotomy was performed at the orthopedic office in the same room we used for castings. Thirty minutes prior to the procedure, Cason had some numbing ointment applied to his ankle. During the thirty minute wait period, we fed him a bottle so that we were sure he was full and happy.
My husband and I decided to not be present in the room during the procedure. We waited across the hallway in a vacant room. I'm still debating on whether I made the right decision by not being with him during the procedure, especially because we could hear him crying across the hallway. Immediately before the procedure, he had a shot to help numb him further. The procedure itself took less than 30 seconds and we were back in the room with him within seconds. We held him for awhile to help soothe him before his sixth set of casts were applied.

Fourth Set of Casts

Casts worn October 12-18 (1 week)

This is the only picture of his casts this week. You can still see how his left foot was turned out more for the casting. Since his right foot had not progressed as much, it could not be turned out at the same angle as his left. The doctor explained that he cannot literally or metaphorically push the foot further than it was ready to go. He said that was a mistake many doctors make and I am thankful that he  did not try to make that mistake!

His left foot after the cast was removed. Looks perfect!

His right foot after the cast was removed. You can see this foot looks short and fat. The angle of this picture also doesn't show how much it still turns in a bit. The doctor cannot manipulate this foot much further through casting so he will have a Tenotomy done in one week.

His right foot again. This is the best picture I was able to get of how red his skin gets. The red is on both feet and on the back of each leg. The skin on his feet and legs is also flaky when the casts are removed. When he gets his bath each week, I do my best to help exfoliate the skin because I hate the thought that it may itch underneath his casts!

Top view of his feet

Third Set of Casts

Casts worn October 5-12 (1 week)

All ready for Halloween with his decorated casts!
Noice how his feet are turned out more than last week.

Here is his left foot after removing his cast. It now points outwards. This is the most improvement we have seen so far.
Another view of his left foot.

This is his right foot after removing the cast. It still turns in a bit and has not progressed as well as his left foot.

Top view of his feet

Second Set of Casts

Casts worn September 28-October 5 (1 week)

Oops! I didn't get any pictures this week of his casts or his feet after the casts were removed. This week's experience was not any different that last. Cason tolerates the casts well and we are so thankful for that!
We did notice once the casts were removed that his ankles were pretty red and the backs of his legs were red and purple. The doctor said this is normal and to anticipate the possibility of them looking worse in the coming weeks.

First Set of Casts

Casts worn September 21-September 28 (1 week)

These are Cason's first set of casts. We were surprised that he was not too terribly fussy during the actual casting which took less than 20 minutes. A layer of cotton is underneath the soft fiberglass wraps. The cotton and wraps were applied by an assistant while the doctor held Cason's foot in place. While the wraps were drying, the doctor continued to mold the casting so that his leg and foot would stay in the proper placement. They gave us sugar water that we put on Cason's pacifier to help keep him calm and he really enjoyed it!

During the first night of wearing casts, he was a little fussy. He didn't seem to be in pain at all but just a little frustrated. I probably would be too if I couldn't stretch my legs out!

We removed his casts a few hours before his doctor's appointment (which we will continue to do each week before new casts are applied). Taking the casts off at home gives us an opportunity to bathe him before his doctor's appointment. He really enjoyed his bath…it was much better than the little sponge bath he was used to while wearing the casts! I think I will look forward to the baths each week since they seem to make him so happy!

This is his left foot after the casts were removed.

I don't have a picture of the bottom of his feet before treatment started, but the creases that were on the bottom of each foot are now gone!

This is his right foot after the casts were removed.

Top view of his feet after week 1 of casts! What a difference already!

A reminder of what Cason's feet looked like before his first casting. He is 16 days old here on his way to the orthopedist.