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.
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. :)
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.
- 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.
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.
- 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!]