Monday, July 15, 2013

Clubfoot Files: Sores and Shoes and Good News

At long last, a new edition of Clubfoot Files.  Truth be told, there hasn't been much to report since my last post about buying your own shoes.  But we recently have had some wearing issues and went to see the doctor, so here is my update.

If you're just a regular reader and not interested in the details, feel free to skip it - but the short version - she's doing great!!

I've had a few people stop by this blog who are also dealing with clubfoot in their little one (hi!), so I'm writing these Clubfoot Files to share what we are going through and what we are learning.  I know I like reading other parents' blogs about it - the more info you can arm yourself with, the better!  It helps to hear what real people are going through.  If this isn't your cup of tea, feel free to skip this post. I'll keep posting about other stuff here too. :)

Harper has been in her current (pink!) shoes since March, which are size 0 (so, worn from 9 months to almost 1 year old).  We knew she was due for a bigger size, but we wanted to check with the doctor first before ordering, just to be sure she wasn't going to go up two sizes (which she did - glad we waited).  Also, can I just say that it's super annoying to have to buy new $200+ shoes every three months??

When we first got those new pink shoes in March, she developed angry red sores on the tops of her feet where her foot bends - like the part where your leg meets your foot - what in the world is that part of anatomy called??  Anyway, it was clearly from the tongue part of the shoe rubbing where her foot bent.  They developed overnight, and while they weren't blisters technically, they were NOT good looking.  I took her in to the orthotist who fitted the tongue part of the shoe with a terrycloth type pad.  This worked and kept the sores from getting worse.  However, since she was still in nights/naps bracewear, this meant that her feet only got 8 hours of breathing time - and it took for the sores to heal.  Like - still aren't healed forever.  The skin was healing, they had scabbed and new pink skin was filling in.  It was certainly progress, but it just looked (looks) really bad in the meantime.  I definitely got a few questions from people who didn't know our circumstances.  They probably thought I put her in some of those baby high heels and pageant-ed her or something.  I never have socks or shoes on her when she isn't wearing the brace (since it's summer and she doesn't walk), so the sores are always out there for the world to see.
You can see one of the sores here- very nearly healed

[Side note - if you don't have a good relationship with your orthotist - make one.  Because I have gone in five times now for issues like this that deal with fit or sores or the like.  When you see an issue developing, go see them.  Because they can correct the fit.  Ours at Children's is great and I can email him pictures or get a same-day appointment usually.  In my experience  the doctor looks just at the foot's development  while the orthotist looks at shoe fit - both are necessary and fulfill different roles.]

So, three months later, sores are still healing - looking pretty decent actually.  UNTIL.  Well, over the 4th of July holiday, we went swimming at my parents' pool one late afternoon.  We were having so much fun that we stayed in for at least an hour.  Harper's been swimming before, but I guess just not for this long.  I put her shoes on that night, as usual, and when I took them off the next morning, her sores looked terrible, and one had even opened up and was bleeding. 

I can assure you - I felt absolutely horrible.  I felt like I was the worst mother ever.

You can sort of see the new, angry sores here

I should have known better.  So all of our three months worth of progress was completely destroyed in one night.  And of course - it was a holiday, the offices were closed, and we were out of state (doesn't it always work like that??).  I tend to over-worry about things, and I was in a bit of a panic about this one.

You see, with the exception of the one night where she had a 104* fever, we had NEVER left her brace off at night.  We were very diligent with naps too (but a few of those had been skipped if we were doing something out of the ordinary).  I knew we couldn't strap a super-tight shoe onto an open sore, but I was so paranoid about leaving the brace off.

We decided to leave it off for 48 hours.  I was convinced I could see her foot turning back in.  (It wasn't).  We just kept telling each other that there are probably many parents out there who were never as diligent as we always were, so two days wasn't going to kill her.

Once we were back home, I added extra protection to the tongue of the shoe using moleskin affixed to the pad, leaving a doughnut area in the middle, so nothing was actually rubbing on the sores.  I also put a band aid on her sores and we prayed it would be ok the next morning.  Our method seemed to work - as in, it wasn't worse - still the same - the next morning.

I was finally able to get an appointment with the orthotist (the morning of our regularly-scheduled doc visit, coincidentally).  He deemed my impromptu method acceptable, but said she really needed bigger shoes.  She actually jumped up two sizes - to the big Size Two!  Since we bought the shoes ourselves and not thorough their office, he was a little hesitant about modifying them (which I totally understand) and said he would have to charge us an office visit if I ever needed them looked at.  So Tony and I crunched the numbers and since Harper is close to her deductible already, it would only be slightly more expensive to get the new ones through their office/our insurance again.  This wouldn't have been the case with March's pair.  And we figured she keeps having fit issues - so it was worth the peace of mind to know we could go in anytime to get them looked at and modified.  The only bad thing is they don't carry the pink ones (tragedy!)

So here we are with our next pair of shoes (our third pair, at age one year, size 2).  They seem to have plenty of growing room, so I hope these will last a few months at least!

And the good news??

Well, our doctor looked at her foot (it's been 3 months) and said it is doing wonderfully!  She even said that it was doing so well that she was comfortable dropping her time down to NIGHTS ONLY!!!

It may not seem like a big deal, but I was so happy to hear this news.  I was quite sick of putting her shoes on when she was cranky right before her afternoon nap, and then having to do it all over again a few hours later in the evening.  And she was sleeping pretty badly since she's more mobile now - and we NEED that afternoon nap!!  So happy feelings all around.  Hopefully her sores will have extra healing time now too.

Harper is getting pretty mobile - she scoots and rolls and pulls herself slightly forward using her arms.  She doesn't crawl or walk or cruise yet, but she can stand pretty decently and the doctor was happy with how she stood on her foot.  Of course I'm anxious for her to walk, to make sure her foot is working correctly, but she's taking her sweet time.  I'm trying to be patient with her. (doing poorly at that).  We work with her constantly on pulling up and crawling and "walking."  I worry we aren't doing enough, but to hear the doctor's approval at her progress - I can rest a little easier.

Oh, clubfoot, it's been a busy year.  But we're plugging through it and soon you will be a distant memory.  

{{Edited later to add:  Per our pediatrician's recommendation  we started using something called DuoDerm.  It is a medicated sticky pad that you cut to size and apply directly to the sores.  It has significantly helped heal them!  She's still wearing it, but I can tell a big difference and am so glad our doctor suggested it.  I had to buy it at a local, old-school pharmacy, since it comes in a large, expensive box, and we only needed one sheet of it.  They were able to parse it out and sell the individual sheet, something a chain store would not be able to do.  It was pricey, at $8 for one little sheet, but it was worth it.  I debride the wound in the tub, cut a piece of DuoDerm, stick it on, and leave it for 2 days or more before letting the wound breathe for a day before replacing with a new piece.  I've also kept her out of the water while it's on. }}

{{Edited even later to add:  PRESSURE SADDLES!!  Why, oh why did we wait so long to buy these???  Months after I wrote the post above, I finally bought some pressure saddles from MD Orthopaedics (see the post about pressure saddles here).  A kind reader (Hannah!) had suggested them, but I somehow forgot her advice.  But once we bought these, it was a game changer.  If you have expereicend any redness or sores on the top of baby's foot (under the middle strap), then please do yourself a favor and spend the $25 to buy these.  Such a small thing made a big difference for us! }}
Check out all of my other Clubfoot Files posts here!


  1. Yay for Harper! Great news! And poor sore ankle fronts.

  2. Yay for Harper! Great news! And poor sore ankle fronts.

  3. Hi there! I found your blog from a mention on Twitter by @miraclefeet. My son is 3.5 with a unilateral clubfoot, too. He's doing great, just like your daughter. When he was first born it was hard to find positive stories of people with clubfoot children past the casting phase so well done!
    Something I have found with the shoes that helps prevent blisters from forming where Harper's are are white things that look like a pringle. In fact, we also order our shoes directly from MD Ortho and I think they are actually called pringles, lol. Unlike the shoes they don't need to be replaced very often (we have had ours over 2 years and still doing a great job.) We lost them for awhile and noticed a huge difference when they weren't being used. Just an idea. :)
    Hannah Hammonds

    1. Hi Hannah! Thanks so much for commenting! And thank you so much for the tip about the pringle - I've heard those mentioned before but I need to actually look into getting some. I had forgotten about that and you're right - it will probably help! Thanks for your kind words and so glad to hear your son is doing so well.

  4. yaaay!! that is great news!!

    {i'm having fun catching up on your posts... getting back into my blog reading routine/learning how to use, or navigate my way through feedly :)}

  5. We just got our two month old daughters braces today. Thus blog has made me feel much more confident on moving forward. THANK YOU for sharing your story. Here we go...

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