Thursday, August 23, 2012

Clubfoot Files: Casting Progress!





I've had a few people stop by this blog who are also dealing with clubfoot in their little one (hi!), so I thought I would update everyone on Harper's status.  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.  Plus I'm just excited and happy for our girl!  

Also - can I just say how sweet all of you have been in your comments - both here, on fb, on twitter, etc - each one warms my heart and I truly appreciate it!!


-----------------------------

So, we got Harper's first cast on when she was a little over a week and a half old (read more about that here).  In sum = the doctor said her foot didn't look too bad, I cried, Harper didn't.  We all survived.


Her foot before casting


Right before the cast went on
In cast #1
In cast #1

We came in the next week to get her cast changed to the second one and the doctor said we were making good progress - hooray!  The angle her foot turned in was much less severe.  The doctor did a bit of stretching and put on #2 with no tears from anyone involved (that's progress too!).


After the first cast came off - progress! 

In cast #2

When we came in to get the second cast off, we got some great news - her foot was pretty much fixed!  In just two weeks, the stretching done by the cast had repositioned her foot so that it stuck out straight (forward) and did not curl inwards.  


After the second cast came off
 It's funny - the clubfoot is her right one - but because she's still all scrunched up - her left one looks like the cf one now!
After the second cast came off
Those scary marks are actually skin folds that are common on cf and that get smushed in the cast - creeped me out when I first saw them, but apparently they are fine.
After the second cast came off

After the second cast came off
The only part missing was the dorsiflexion (the part that lets your foot come upwards towards your shin - essential to walking). You can see this in the above pictures, as her toes point towards the ground instead of out at a 90* angle from her leg.  This is the part of clubfoot that usually requires the tenotomy, since the Achilles is usually too short to allow this range of movement.  So we got her 3rd cast on last week, with instructions to come in this week to see the surgeon, who would examine her foot and schedule the surgery.


In cast #3
Well, we went in yesterday and got even greater news - no surgery needed!  Her foot was pliable enough that the doctor thinks stretching will do the trick.  We were relieved, to say the least.  While the surgery is not that big of a deal technically, it would have required a spinal block for Harper and an overnight hospital stay - so the fact that we're avoiding that is wonderful.  Apparently a good 90% of cf need the surgery, so we really are dealing with a much milder form than many others do. (gratefulness all around!)


After cast #3 came off

After cast #3 came off. Nice pig face Harper!

After cast #3 came off.  Yucky casting gunk.

After cast #3 came off

So instead of surgery, Harper is now in a cast that will stay on for 3 weeks instead of the usual 1 week.  The doctor stretched her foot out and pushed the heel downward before applying the cast, making it look like a right-angled foot instead of a turned one like the previous casts.  She will then do an xray after the 3 weeks to ensure the bone is in the right place before moving forward.  If for some reason the stretching wasn't enough, we can always do the surgery then - it's not like we've missed our window or anything.  I'm glad the doctor wasn't pushing surgery if we didn't need it.


Her 3 week cast to stretch her Achilles - looking like a normal foot!

Our next step after this cast will be the bracing setup.  Harper will wear this lovely contraption for 23 hrs a day for 3 months straight.  


via
From then on it will be worn during night and naps until she is 4 years old.  Although we have a milder case of cf, 4 years is the recommended time for anyone, regardless of severity.  That way, there is a much lesser chance of relapse.  We certainly don't want to have to come back and repeat casting, or worse, have an older child who does not have proper use of her feet.  So while that process will really suck, I know it's worth it.


If you're reading this and happen to be getting casts soon, here are some things we learned (each case is different, of course, but this is what happened/worked for us):
  • It's not that bad.  Really.  Surprisingly.
  • Your baby will pee into the cast.  And poop will get on it.  It's ok.  They get changed frequently.
  • Get some bigger socks.  The tiny newborn ones won't go over her cast, but bigger ones will.  Sometimes those little exposed toes get cold.
  • I was afraid her uncasted leg would get really raw from rubbing.  Really there's just a sore spot on her foot.  We just keep a big sock on it and that helps.  Pants that are loose would still work with the cast, but because it's hot out, we never really put her in any.
  • She sleeps in a Halo sleep sack - plenty of room for the casted leg and keeps her warm since she can't wear traditional jammies.  
  • Expect some fussiness the day of the casting.  Luckily, Harper was never too bad, though.  Also expect the feet to look pretty weird when they come out of the cast - there is some extra skin that will get folded and will look like a cut or sore, but it isn't.  The plaster gets everywhere too - you will be peeling it off her tummy, face, etc.
  • A rolled up receiving blanket under the leg helps when baby's lying flat or riding in her carseat.
  • Don't assume people are going to be totally rude about it - so far, we have had nothing but well-intentioned, polite, curious questions.


Also, as a bit of an aside - we sit in the waiting room of the orthopedist each week and feel immeasurably grateful.  Not only are we close to a great practice and have the means to get Harper treated (hellllllo insurance yearly maximums), we also are dealing with an issue that fixable with minimal treatment.  The office sees a wide variety of patients, and we are just so grateful to be dealing with just clubfoot.  We have a lot to be thankful for.

--------------------------
And now, for the mombragging segment of this post:  




Anyway, other than that, Harper is doing great!  She's eating well and sleeping well, except for those pesky witching hours in the evening.  

It's clear she's going to take after her dad in more ways than just looks.  She's always warm, hot even, sometimes sweaty.  She sleeps in just a diaper and a cotton sleep sack (with her arms out) and is still warm, despite the cool temps in our house and a fan in her room.  I walk around in long sleeves while she's naked and hot.  Apparently, Tony was the exact same way as a baby and still is!



She's also active and quite the mover.  I know the cast is giving her an unfair advantage, but she will roll from being on her back to her left side then back to her right side.  Sometimes I find her sleeping on her side.  This scares a paranoid momma like myself... We stopped swaddling her about a week in, mostly because she hates it.  She likes to have her arms free, moving around - unfortunately this often wakes her up, but it's not worth the swaddling fight!  I also am afraid she is going to flip herself over somehow and I want her arms to be out anyway.  She's strong too - rearing her head up and back, trying to jump out of your arms, etc.  Don't even think about trying to change her diaper when she wants to curl her leg up.  She can even lift up that heavy cast and throw her legs around.  Again, apparently Tony was quite the mover and never wanted to be cooped up.  (He's still like this as an adult, so I believe it!)

Harper will literally attack anything that gets near her mouth, shark bite style.  Let's just say I'm feeling the effects of this... but she will do it to a pacifier, a finger, anything.  This girl has jaws of steel.  Good for her eating habits, but bad for my body and for the times when she's eaten more than her fill but still wants to gum something.  She's finally starting taking a pacifier, which helps.  She's still spitting up a lot, probably due to the aforementioned activities, but she's gaining weight well, so really it just means about 3 daily loads of laundry for me.  No matter how well I position a burp cloth, she finds a way to spit up directly down my shirt.  Never fails.  I'm thinking of getting an smock.  Or a wetsuit.



I can't believe we've had this girl for a month now - it feels like forever, but somehow, time has flown by too.


------------------------------------------
Check out all of my other Clubfoot Files posts here!
------------------------------------------

7 comments:

  1. What an adorable baby ! Congratulations to you both :)

    www.christianaholt.blogspot.com

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Claire, I'm so happy to read that so much progress has been made. What a sweetheart you have, and such a trooper to go thorugh all this casting and re-casting. And, momma, you are such a trooper too. Being a mom is such hard work, I just cried reading this because I wish you didn't have to go through this. You are clearly dealing with this better than I am. ;) And isn't it funny that Harper is taking it like a champ. It sounds like it's harder for the parents.

    Also, I'm seriously laughing (after crying) about the fact that she grabs things shark bite style. Henry isn't quite as intense, but sometimes, the way he grabs onto his pacifier is totally like a shark. Hilarious.

    Hugs!

    ReplyDelete
  4. Claire, I'm so happy to read that so much progress has been made. What a sweetheart you have, and such a trooper to go thorugh all this casting and re-casting. And, momma, you are such a trooper too. Being a mom is such hard work, I just cried reading this because I wish you didn't have to go through this. You are clearly dealing with this better than I am. ;) And isn't it funny that Harper is taking it like a champ. It sounds like it's harder for the parents.

    Also, I'm seriously laughing (after crying) about the fact that she grabs things shark bite style. Henry isn't quite as intense, but sometimes, the way he grabs onto his pacifier is totally like a shark. Hilarious.

    Hugs!

    ReplyDelete
  5. I can't wait to see this baby tonight! she seems toddler size!!

    sidenote: Lyla was and still is the exact same way about being hot. when she was a baby she would get so sweaty when I would be cold. She still hates having blankets or anything over her when she sleeps. She just does what Byron does and shoves them between her legs and sleeps on her side.

    Love you guys and cant wait to spend the weekend with you all! Everyday Lyla has been saying "I go see baby harper this weekend!" :)

    ReplyDelete
  6. Total Contact Casting : Total Contact Casting is recognized as the Gold Standard for offloading diabetic foot ulceration within the diabetic foot-care community.Total contact casting is a medically recognized procedure and is incorporated in several clinical guidelines.

    ReplyDelete
  7. Your humor is great and provides much needed comic relief! It reminds me a little of Heidi Murkoff's humor in the famous "What to expect when you're expecting" pregnancy survival book! Your positive attitude and great sense of humor is healing. It's so wonderful to hear that your baby's treatment and journey have been a positive and successful one for both you as parents and her! Back to studying your journey of experience.

    ReplyDelete

Your comments make me happy!

Related Posts Plugin for WordPress, Blogger...