Friday, November 15, 2013

Clubfoot Files: Updates and Thoughts on Milestones

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I've had a few people stop by this blog who are also on the clubfoot journey with 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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We went to the Children's orthopedics office this week for a checkup on Harper's clubfoot.  I was a little nervous, since it had been 4 months since her last visit, and she had begun crawling and walking with assistance, all since that time.  Although her foot looked fine to me, there's always that worry that it's beginning to turn back in.  I fearfully imagine it relapsing to a point beyond repair in the months between our visits. I think of a toddler in a leg cast.  I think of extended brace wear again.  I imagine a tenotomy, since we never had that before.  I worry, basically.  What mom doesn't?



Yet, despite my frivolous fear, we got great news - her foot is doing perfectly!!  So much so, that we don't have to even come back in until she's two.  That's 8 months from now.  I asked the doctor a few times to make sure she was really, really sure we could wait 8 whole months for another professional look at it.  She assured me Harper's foot looks perfect and explained a bit to us what we should look for if it were to start relapsing.  Whew.  Harper does point her second toes towards the underside of her foot sometimes when she's sitting there, which I was slightly concerned about (even though she does it on both feet, not just her cf one).  Yet the doctor said that's normal and she sees it a lot, especially in pre-walkers.  The doctor liked how she stands on the foot and likes that's it's flexible.  



It almost makes me nervous that these visits with the doctor are so short - shouldn't she examine it super-closely and do fancy medical tests or something?  But no, none of that's needed since it's so easy to tell that her foot looks great.  It's a relief, truly.

With clubfoot, so much of the hard work is upfront.  It's weekly casts and weekly progress and then time measured out in hours in a brace and months of continuous wear.  It's changing shoe sizes and hours per day and a baby that's constantly growing and changing.  

And then - well, then it just gets easy.  We are in the phase that's going to be the longest -- nighttime brace wear -- but the one that's also the easiest.  We just keep it up.  Her sores have healed (with the exception of one very small scab that's always there), her shoes fit well, and she can even stand up in her crib in the brace.  Putting her shoes on is such an ingrained part of our nighttime routine, we don't even think twice about it.  Although, I will say, it takes a little more effort to put them on now, as anything that requires Harper to sit still (diaper changes, carseat buckling, etc.) doesn't fly.  I think it will be a little rocky until we are able to reason with her/bribe her.  Right now, Mickey Mouse Clubhouse and tickles from dad usually do the trick.



 It's a pain, sure, but it's so not a big deal.  I just want to say that over and over in these posts - to the parents that are in the trenches of it - perhaps even in the early worry pregnancy stages - it's so not a big deal.  Especially once you're this far in.


Regarding milestones:



Harper doesn't walk yet.  She's nearly 16 months old.  I know that babies all follow their own timelines, and that she's not delayed yet.  She cruises really well and can push toys super fast.  Yet she just doesn't have the confidence or balance to stand up and walk on her own.  I know this is ok.  In fact, often I'm grateful for it, because I know the whole-new-world of terror that will unfold when she can walk.  And most likely, her slow-poke-ness in the moving department (she rolled over at around 6 months consistently, crawled at 13 months, and tbd on walking...) has nothing to do with clubfoot. (Well, I'm not 100% on that.  I just know there are plenty of cf babies who hit those moving milestones early, with no trouble.  Yet I just can't deny the fact that she spent her early months in a heavy leg brace with no opportunity to practice.  Surely that's got to count for something.  But then there's also her meaty thighs, and I think that might be a contributing factor too...)

I remember, back when I was pregnant, I would read the Babycenter clubfoot message boards, absorbing info like a sponge, storing it away for future use.  There was a thread about when your clubfoot baby walked, and the answers were in the usual range, with quite a few on the older side.  One number, 16 months, stood out to me, and I remember thinking "oh my goodness, if my kid really isn't walking by 16 months, I would be so shocked.  I can't believe that - it's so late"  Yeah well, here we are.  And it's ok.

Luckily, the people we know don't bother us about her not walking  since they know her history, yet there are the occasional stranger comments.  But overall, I'm really not worried.  Sure, it would be nice to not have to lug around a 26 pound child.  But it's also nice to know I'm still faster than she is :)

Our babies will always keep us on our toes.  They arrive filled with their own unique spirit and agenda.  They may take months and months to master a skill, then surprise you out of the blue with a hug or spooning a carrot into their mouth all by themselves.  They all get there eventually, on their own timeline, and teach us adults a thing or two about raising an independent little being.  So, instead of letting my usual fear creep in, or falling into the comparison trap, I'm choosing to embrace each victory, each tentative second spent standing without holding on, each lap across the front yard pushing her wagon, each smile and kiss and giggle.  We'll get there.

12 comments:

  1. Awwww! I love that little girl!!! I think about her all the time... partially because I SWEAR she's the baby model on the Kroger "Comforts" diaper boxes and you're just not telling us. ;) I LOVE her thoughtful picture... just checking out the trees... sniffing the breeze, chillin with my wagon. And 16 months without independently walking... I know. You know I know, of course. What a relief (and a terror) it will be when they're racing around the house.
    Rob emailed me at work to tell me yesterday that K drank from a sippy cup WITH BOTH HANDS while standing at the couch and he saw SUNSHINE between her belly and the couch!! Of course, our anxious girl never noticed that she wasn't holding on to anything (or there would have been worried whining) and she went right back to "cruising".
    Soon. It's coming, I'm sure of it, and I can't wait!!

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  2. wow!! such good news... & yes, you will get there :).

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  3. So glad you got wonderful news! She's such a sweetheart. I'm always shocked that Thomas's follow-ups at the neurosurgeon honestly last 2 minutes. I mean, I get she knows what she's looking for and at this point it's just following him yearly until the soft spot is 100% closed, but I'm always in awe of the $120 per 2 minutes fee we pay for that expertise. And then I'm thankful that we have the ability to have her expertise. And then I think my kids should consider careers in neurosurgery at that rate :)

    Harper is healthy and capable of getting around - that's all that matters! You're doing great, mama!

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  4. She is so sweet and I'm just so happy you got good news from the doctor. Congratulations, momma and dad. You guys have rocked this!

    As for walking, if it's not that it's something else. I'm currently worrying about Henry's speaking. (OHMYGOSHWHATIFHENEVERREALLYTALKS?) Not that it's the same thing, but I feel like as parents, we are always wanting to make sure our babies are doing what they "should." It will call come and we'll laugh about it later, right? I'm sure I'll wish Henry would shut up. ;) Kidding. Not kidding.

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  5. Yay! So glad for the good news!! This is super great :) She is so cute and sweet! She will walk on her own time, and then when you look back at this time, it will all have gone by in a blink of an eye and you will wonder why you ever worried at all! My niece didn't walk until 18mo, and I didn't walk until 15mo- neither of us had clubfeet. Also I barely crawled- I just rolled everywhere!
    And if this makes you feel any better- B is ALREADY 25 pounds at just under 1 year old. And isn't walking yet, so I carry him- my back/arms are killing me. I'm hoping to get Michelle Obama arms out this experience- I can dream right?? :)
    www.davenportdiy.com

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  6. Thanks for your blog! I am one of those parents that is consuming all the info I can right now. I am 32 weeks pregnant and my baby boy will have a RCF. It is so helpful to read your blog and others and know what the journey might be like. Thank you!
    Tara

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    1. Hi Tara!! Thanks for your comment! So glad these posts could help in some way! Best wishes to your new baby!

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  7. My oldest didn't walk until she was nearly two, but she had some developmental delays and needed OT (she has high-functioning autism). My second walked at 16 months, my third at 15 months, and my fourth at 14 months. I'll be interesting to see when Peter walks, due to his bilateral CF - I wonder if he'll follow the trend and walk the soonest of all of them!

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    1. Too funny!! Yes, I bet he will need to walk early to keep up with everyone else! :)

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  8. Great news! And just so you know, Stella isn't walking yet either.....

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  9. Great post. Thank you so much for this series. I found your blog when we got the scary diagnosis of Bilat Club Foot for our daughter a year ago. I remember being absolutely terrified but, so far, the process has been really (as you say) no big deal. She has done so well with casting (from 3 days old!) and is still wearing boots and bar most of the time, with increasing breaks during the day. Although we're a long way from being done with the treatment we have come so far and I have learned and grown so much as a person and as a mom through it. Your blog was one of my main sources of reassurance throughout, so thank you again!
    Georgia

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    1. Thanks for your comment Georgia!! So glad to hear it's going well for you too - it's definitely one of those things that seems so scary at first, but then the time flies by and it's easier and easier! And I'm so glad these posts helped in some small way :))

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