Tuesday, September 18, 2012

Clubfoot Files: Brace Yourself



Last cast day!!

Tony and I are convinced that there is a reason Harper has clubfoot.  If she didn't?  We would seriously have the easiest baby ever and would be truly spoiled and think that all babies are this easy.  We might be pondering a whole brood.  Truly, if it weren't for the complications of clubfoot, we would have the easiest time.  I am so thankful every day that she's making this process so much easier on us all.


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See my guide to clothes and gear during the bracing stage here
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Getting casts put on Harper was the easy part, believe it or not.  Bracing?? A lot harder...

Last week we went back to the doctor. She had been in a 3 week cast to stretch her heel down (as an alternative to surgery yay!) and we were getting xrays to be sure it worked.  I was pretty confident it would work, but I was glad to get official confirmation.  

Side note: babies don't really like being pinned down to get xrays taken. And the little circle that serves as the protective apron for the rest of the body is not reassuring either ...

IMAG0188.jpg

After a quick visit with the doctor, we went to the orthotics office.  I was really happy with this group (at Children's of Atlanta).  They took over an hour to talk with us, walk us through everything, and answer all questions.  They were in no rush and I was so grateful.  The orthotist gave me his email, telling me I could send him pictures if I had any concerns (which I did, the first night!).  He's since seen us without an appointment to help with troubleshooting, and he emailed me today to check in.  So wonderful to find healthcare providers who really are an ally and care about your child.


Harper was fitted with the Mitchell shoes and the Dennis Browne bar. I had a little freak out moment when I saw what bar we were prescribed, since I had read that the Ponseti bar was best. After a detailed comparison given by the orthotist on the difference, I'm now glad we went with the DB one.  It's a quick release, where the shoes pop off the bar, instead of being screwed on.  The angle of the feet is also already set (the cf one is kicked out to 70 degrees) - we don't have to worry about that each time.  But otherwise, it's practically the same static bar - it even says Ponseti on it!


During the marathon doctor visit, Harper did so well.  She barely fussed.  Her leg was super sensitive, since it's been locked up in a cast basically all of her life.  But even when getting poked and prodded, she only cried a bit.  Our little trooper.  We were fearing a week or so of extreme fussiness as she got adjusted to the brace.  She was up frequently the first night, but the second one??  Well she went ahead and slept through the night for the first time.  Ha!  We need to stop underestimating her.

First day with nasty cast leg.
It's amazing how tight you have to get the shoes. You have to pull until it practically feels like the strap will break.  The leather stretches over time, so it's not like you are using the same position each and every time either.  If you get them too loose, the foot can rub and become blistered, not to mention it's not doing it's job properly either.  Too tight and she loses toes.  It's a bit unsettling to be told you have to watch for her knees to turn purple to make sure that blood isn't pooling because they are too tight. Ugh. It's a two person job for sure, as it takes one baby wrangler and one shoe wrangler.

[Edited later to add: I now do it all by myself, no problem!  It will get easier, promise!]

[Edited later to add: the above is NOT how you do it.  The leather tongue strap part goes right over where their foot bends - NOT that high!  We realized that later!]

Luckily, the brace fits into the Halo sleep sacks she has been wearing to bed anyway and it's not cold enough outside yet to have to worry about pants.  I think she's happy to be able to scrunch both legs up again.  She can easily pull both of her knees up, but I haven't yet seen her lift the bar in the air. One day.  She is such a strong girl anyway, I know she will figure it out soon.


I will have to write a post later about gear that works well for this stage.  We have already figured out some things that work great and some that don't. It's not too terribly difficult, but it just takes some modifications to make things work.  You should see how I nurse her - comical!  She lies on her side so one foot is stuck up in the air, comfortable for all involved (ha!)

Baby snowboarder??

She gets one hour of free time each day to let her feet air out and stretch.  I may or may not yell out "Free Piggie Time!!!" the entire hour.  I love it.  She loves it.  The minute the shoes come off, she kicks and kicks.  And she got a real bath for the first time ever.  That was perfection - she's never been so clean!

Already, after less than a week, her foot is almost looking normal, not all gross like it was when the cast came off.  You can't even tell it's the clubbed one, besides the fact that it's a little chubbier.  I am SO happy this treatment has gone so well so far.  Her foot has responded fabulously.


This process definitely makes me appreciate Free Piggie Hour.  I don't know if I would have otherwise taken the time to enjoy every little kick she kicks, or how sweet her little feet are, or how wonderful it is to curl her up against me unencumbered.  And when she rolls over?  Crawls?  Walks?  Runs?!  ... yeah, I will appreciate those so much more too.  



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Check out all of my other Clubfoot Files posts here!
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7 comments:

  1. She is such a sweetheart and getting so big. I'm glad the bracing is going so well and making such a difference. Hugs to you and to your little sweetheart. Also, I just can't imagine nursing with her bracing. It's a bit awkward as it is. Go momma go!

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  2. You're doing SO great Claire! The last paragraph got me teared up. Way to go Harper!

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  3. Looks like she has a little hover board! I'm so glad she is tolerating everything so well.

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  4. I love the updates. And that little munchkin is SO FREAKING GORGEOUS!!! Also... I know they're not designed for style or anything, but those little shoes are actually pretty darn cute.

    I agree with Kim... GO YOU for dealing with bracing and nursing with humor and stamina. You are AWESOME!!!

    Your thoughts on appreciating her little feet and the milestones they'll accomplish... so sweet. You're such a good mama. :)

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  5. Hi there! I'm 35 weeks pregnant, and our baby has been diagnosed with bilateral clubbed feet. I've been reading through your blog and really appreciate all your posts and pictures! Your daughter is adorable! I'm wondering what type of pink sleeve you have over her cast, and where you purchased something like that? Thanks! :-)

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    1. Hi Kristin! Your email isn't attached so I hope you are able to get this! Congrats on your baby! I'm glad these posts have been helpful - that's always been my goal - to provide a positive story to make it a little less scary. A friend got me a bunch of Baby Legs for my shower - they were great to go over the cast to both protect it from stains (think poop, etc!) and to keep it from rubbing her other leg. I started by putting them on both legs, but found it was just easier to keep it over the cast, especially since it was warm. Good luck!!

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    2. Thank you!!! I will check them out!

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