Monday, March 25, 2013

Clubfoot Files: Buying Your Own Shoes



Harper has some fancy new shoes!  It's totally normal to buy an 8 month old $200+ shoes, right?? :)

Here's how we decided to order shoes ourselves and a followup on her progress at the end of the post.



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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. :)
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After 7 months in a very small AFO shoe size (00), she was finally ready to move up to the big single 0 size (ha!).  My baby has tiny feet, which is fine by me.  I wear a size 9.5-10, and I can assure you, there are rarely any cute shoes whatsoever in this monster size.  More normal sized feet would be great.

Harper's toes had been creeping up over the edges of her old shoes, but our doctor told us we could wait until her toes were officially curling over the edges to get new ones.  So we waited until our scheduled 7 month check with the doctor to get new ones.



See something awesome about the new ones?  They are pink!!  I know, I know, NOT a big deal.  But when your kid has to wear ugly orthotic footwear, it helps if they have a little character.  They recently started making the shoes in blue and pink, in addition to the typical gray.  Harper only wears hers while she sleeps now, so it's not like anyone seems them anymore, but it would have been nice to have a fun pink while she was wearing these 23 hours a day.  And I get to appreciate them now, so that's good enough for me (plus, there was no extra charge for a little color!)

Since this is her second pair, we opted to buy them ourselves instead of going through Children's Ortho and insurance.


I will say - I would not take the DIY route for your very first pair.  It was INVALUABLE to sit in the Children's office that first day she got her brace and have the orthotist explain everything to us, measure her extensively to find the right fit, and get the shoes that same day.  The orthotist called us to follow up and was so amazingly informative and friendly.  Even if we had to pay full price for those first shoes, I would still go that route for the first pair.

Yet buying them ourselves made so much sense for the second pair, in our particular insurance situation.


Here's why:

  • The company MD Orthopaedics makes the AFOs/bar that our office uses anyway. Yet you can buy shoes directly from the company yourself, without any prescription or insurance info.
  • We knew exactly what size we needed.  Although they offer help on gauging the size you need, we didn't have to worry we were getting the wrong one.
  • MUCH cheaper!  Everyone's insurance situation is different, but we have a $500 deductible, and then pay 20% after that up until our personal/family limits.  Last year, we had hit our max just by me giving birth, so it didn't matter that the shoes cost $1600 from Children's, since insurance covered it all.  Yet this year, luckily, we so far haven't gotten close to even our deductible, since Harper's well visits are covered anyway and we haven't had any sickness yet (things could change, of course, later in the year).  We would have had to pay $500 (the deductible) for the shoes, plus 20% after that (I think - ask Tony...).  So, while it probably wouldn't have cost as much as $1600, since we are able to use the same bar and only needed new shoes, it would have still been at least $500 to go through our doctor. 
  • MD Orthopaedics charged us $237.60 for the shoes, $7 shipping, and gave us a $12 discount for using a credit card.  Total $232.37.  MUCH better!  We got the pink pair, they had great customer service, and the shoes arrived in less than a week.

I would definitely recommend going this direction if you are in a similar situation.

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I mentioned we had our followup doctor's appointment, marking 3 months of nights/naps only brace wear.  I was convinced the doctor would see Harper's great progress and we would be given the all clear for 12 hours (night only) wear.  Well, that didn't happen.  But it's ok.

Harper's foot looks great (yay!) and the doctor again reassured us that all was right on track.  Our next test will be to see how she does once she starts walking, to see if she puts weight on it incorrectly or walks on the outside of her foot.  But until then, it's smooth sailing.

I asked about reducing her time to just nights, instead of nights and naps (meaning going from 16 hours to 12).  She referred to it as "an experiment that's not worth trying."  I understand.  

As much as I want it to be more convenient for me, it's just not worth a relapse.  My doctor seems to be a little more conservative in terms of her approach, which, honestly, I prefer.  I hear of people doing away with the brace entirely at age 2, and that scares me just a little.  Each case is different, of course, and I feel it's important to trust your doctor.  But my doctor believes in brace wear whenever she is sleeping until she is 4-5 years old.  That seems interminable, but it's worth it for a lifetime of healthy feet.

So while we don't get to reduce our time, the doctor said she will gradually reduce the time just by the nature of dropping naps.  I'm continuing my approach of putting the brace on at bedtime at 7 and leaving it on through her first nap, ending at 11 am.  I know it would be better to take it off when she wakes, and then put it back on for her morning and afternoon naps, but that's just not practical.  However, since our appointment, I've begun taking the bar off right when she gets up and just leaving the shoes on while she's awake.  This way, I'm not hindering her development, but I'm not having to put the shoes on and off (the hard part) all day.  I told our doctor about this, and she was ok with it, so I am too.

2 things:
- I am grateful, every single day, that we are only dealing with clubfoot.  It's a foot - a simple foot - and something that is 100% treatable.  Sometimes I feel guilty about even writing about it or talking about it, since there is so much more we could be dealing with, that we are thankfully not.  I do want to share information, but I just never want it to seem like I am ungrounded in the severity and impact of this - it's mild compared to so much else and I think God we are so blessed.  It's not that big of a deal.

- It's irrational and silly, but I've been really worried about her development lately.  Part of me worries it's something I have done (or not done, really), and part of me wants to explain it away by the fact that she spent 6 weeks in a full leg cast, followed by 3 months in a brace 23 hours a day, and now 16.  Harper is 8 months old today and has rolled over just 6 times (yes, I'm counting, ha!) and shows very little interest in becoming mobile.  She sits really well, and has quite strong legs, but doesn't really care to move.  No scooting, no wiggling.  I know most moms out there are laughing, thinking that I need to appreciate the immobility before it becomes forever changed.  And I know that each child develops differently.  Harper is quite chubby, and it's a vicious cycle because that keeps her from moving, but the not moving keeps her plump!  And it's ok.  I know it's ok.  I know she will get there on her own timeline and everything will be totally fine.  I just wanted to share - I know it's somewhat normal to worry and probably a normal feeling for other clubfoot moms, but there it is.  I'm a crazy person.  And I love Harper and think she's perfect just the way she is - it's more about me, worrying if I'm doing it right, if that makes sense?

Anyway, that's where we stand in the clubfoot adventure!



[I think it's pretty obvious, but these opinions and this recommendation are all my own.  I just wanted to share a company that we were happy with - they don't know I exist beyond my order a few weeks ago!]

21 comments:

  1. She is so cute- B has a similar whale outfit (in fact he is wearing it today!)- they should get together and be twins :)

    This is a great post- and I'm right there with you on the worrying about development and meeting/not meeting milestones. I have to keep telling myself that every baby is different, and they will do it when they are ready!! You are definitely doing everything right and this time next year you'll be looking back at this post thinking that you can't believe how much she's grown (as she runs around your house at full speed). You're doing great at helping make sure she's able to run around (full speed)!! Plus, you'll have some awesome baby photos to share when she's older- those rolls are just incredible. :)

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    1. thank you so much emily - i feel guilty even worrying about it, but glad to know i'm not the only one. and you're right - next year it will be so very different!! :)

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  2. LOVE the pink shoes!!!! Pink is important. I get that. :) And YAY for saving money! Thrifty AND Pink?? Does it GET any better??

    I think everyone with Baby #1 worries about milestones. I know I shouldn't, but I worry, too. I think that just means you're a good parent. K is 9.5 months and isn't crawling. And my skinny munchkin has no excuse. ;) She's only just now kind of figuring out how to scoot around on her bottom. She REFUSES to be on her tummy/knees. She decided at 2 weeks that she hated tummy time and has never wavered on her tummy time stance. I don't think most moms blab about their kid's mobility skills unless they're ahead of the curve, so we get this unrealistic picture of what should be happening. It'll happen. Harper's not behind. And those rolls... OMG DELICIOUS.

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    1. thanks sarah!! you are so very right - it's all the good stuff, not the real stuff - that's usually out there. i try so hard not to compare - butttt it happens... and your K is so so so cute and i'm glad she agrees with H on the terribleness of tummy time and moving in general :)

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    2. Sarah (and Claire!) - Add Nell to the 9.5 month old not crawling camp. Totally normal - and I freaked about it when Thomas was there, but with baby #2 we just know it will happen when and if she's ready.

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  3. I think everyone has the same worries about not doing something or not doing enough when it comes to child development. All you have to do is look at that smiley face and know you're doing a great job :) keep it up!

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  4. She is such a sweetheart, and getting so big.

    I worry a little about milestones, too. But a friend recently told me something so smart. She said, when these babies hit kindergarten, they will all do the same thing. No worries about what happens between now and then. (Well, just a little worry.)

    So glad your sweet baby is doing so well. And rocking those new shoes.

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    1. thanks for the encouragement!!! and you're totally right - i will look back and laugh about any fears!

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  5. You have such a great outlook, and Harper's pink shoes are adorable! Try not to worry too much about her gross motor development (easier said than done) - every baby does things in their own time. She CAN roll over, it doesn't matter how often she does it (in my non-professional opinion)! And when the time comes for walking, I swear by the Radio Flyer walker wagon - we call it the magic walking wagon.

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    1. thanks emily - i appreciate it! and the wagon is on her wish list from grandma! :)

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  6. I worry about milestones (and everything else!) too. I think that's natural. For us, the issues have mostly been with reflux and lack of weight gain (Jack is a freaking string bean). And he's pretty much been sick since October (probably from daycare, which makes me feel so terrible). So I guess my point is we all worry or feel guilty about something, and that's ok :)

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    1. thanks erin! harper will share some of her blubber with jack!

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  7. Even though everyone else has said this already...I'll reinforce it for you: you're doing an amazing job! Stella hates tummy time/sitting/rolling/moving in general. I'm no expert, but I think a lot of it is personality. The age range for mobility varies SO much, so you can't really compare. Also, some kids go from doing nothing, to crawling and pulling up in a matter of weeks...so be careful what you wish for! Love you guys!

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  8. Can you tell me if your little girl had a heel crease? My little girl has a left clubfoot but hasn't had her first cast yet... Not until next week. She has a very slight medial crease but a relatively deep heel crease. I've spent a lot of time crying over this but your blog has perked me up a bit. Finally a google search that made me feel better!

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    1. hi natalie! sorry i couldn't find your email to email you back directly, so i hope this gets to you!

      our doctors never brought up anything about a heel crease - she could have had that and it was just never pointed out specifically? i'm not sure!

      i will say that she did have a fold-type part on her foot where it curled inward from the mid-sole forward towards her toes... basically just the skin following where it was bent inwards - but happy to say her foot looks totally normal now! there is a bit extra skin now and it's a little fatter/smaller, but it doesn't look weird at all. i will say we've had a very mild case compared to some though.

      anyway, sorry, not much help! but glad to have been a positive resource for you - that's why i've written about it :)

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  9. yes, it is totally, totally normal. and with your next (if there is a 'next'!:)), you will worry far less~ because you will not only think your words to be true (last paragraph), but you will *know* them to be true. xoxo

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  10. Hi Claire,

    Thanks for the post! My little one also has a club foot (unilateral, right side) and I'm looking forward to getting her some pink shoes when we get our next pair - even if it's just for us to see at night :)

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  11. Buying a shoes online is not easy for me because I can't find the best design that will fit on my feet. I always check this website http://www.boex.tv since my friend recommend it to me. They are selling a good quality secondhand shoes and you can also check their site to know more about their products.

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  12. Pictures are really cute and heart happening. Good ,, really good article..
    "buy shoes online"

    "buy sports shoes online"

    ReplyDelete

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