Clubfoot

World Clubfoot Day — June 3rd, 2017

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I’ve written a lot about our son’s clubfeet and all the medical care he’s received as a result. June 3rd is World Clubfoot Day and we spent a lot of time reflecting on our journey so far and what our sweet boy has been through. He’s come so far!

We’re the lucky ones — we only live two hours away from a top-notch clinic at a Shriners Hospital for Children, we live in the first world and have health insurance and access to plenty of information. And, clubfoot is a congenital birth defect that’s relatively common and completely treatable. It’s not life-altering. But it could be, if we didn’t have access to all of this. If you ever feel like it’s hard to make a difference in the world, here’s one thing you can do:

  • Donate to MiracleFeet: they provide organizational, technical, and financial support to over 150 clinics throughout the world in order to provide treatment to children born with clubfoot. The treatment costs, on average, only $250 per child and is free or extremely low-cost for the families who receive it
  • Support Shriners Hospitals for Children

The Wyoming Shrine Bowl is next week. We attended a few years ago when we lived in Casper, but had no idea at the time it would become personal. Sitting in the stadium then, we never imagined we’d someday be beneficiaries of local Shriners’ fundraising efforts a few years later!

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We are lucky his birth defect is mild and treatable, but even then, it’s not cheap, and Shriners helps make it all so much more affordable.

For anyone who might end up here after receiving the initial diagnosis: there is a lot of joy to come, even though it may be hard at times. Just wanted to share some encouragement as we celebrate our own precious little one! ❤

Clubfoot

Clubfoot Update: Almost Out Of Daytime BNB Wear!

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We are now nearly done with 23-hour bracing, and it’s incredible how fast this phase has gone. We go in for a follow-up appointment this week and if his feet look good, he’ll be cleared to wear the brace for naps and nights only!

23-hour basically means your kid wears the boots all the time, but you’re allowed an hour of free time. We’ve been doing his free hour in the evening and usually take advantage of it to give him a bath. Some people do a half hour first thing in the morning and a half hour before bed.

I’m pretty sure I significantly over-prepared when we started out. I had moleskin, band-aids, sheepskin scraps (helpful for padding) and the MDOrtho website on speed dial, ready for bruising, blistering and general misery. Three months later, Jonas hasn’t had a single issue! The first few nights of BNB (boots and bar) were rough, but once we got through the adjustment, it’s been right back to normal — if not better.

His feet and legs look a little funny without the brace because they are squeezed for so long, but the nurse explained this is perfectly normal — skinny ankles and puffy-topped feet — the brace needs to be tight at the ankle especially, so all that baby fat has to move over! Here’s what they look like after 23 hours in the BNB:

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Those muffin-top legs crack me up. And his little feet keep the turnout and stay at a perfect 90° angle even when we remove the BNB because they’ve been in there so long! Over time though, this will all smooth out. I’m curious to see how it changes with less wear now.

As much as the 23-hour bracing phase has been relatively effortless, I’m truly looking forward to ditching the brace during the day. It makes baby-wearing pretty difficult (some people do it, but I couldn’t find a way to make both of us comfortable, plus it was mostly winter anyway and we weren’t out and about in nature for very long periods of time!) and then there’s the fact you have to hold your baby a little differently — no propping the baby on your hip, for example. And if I want to lay him on my lap with his feet towards me, I get gut-punched with his brace. Not to mention that thing is painful if he slams it down on you when you’re not paying attention!

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And that’s just why I don’t like the brace. Jonas has adapted because it’s all he’s ever known at this point, and he wields that thing like nobody’s business. He quickly learned to move both legs together for maximum effect, or how to set one foot and push off with the other, using the bar for leverage. He started rolling over just fine, approximately at the same age my daughter did if I recall correctly. I actually feel like his gross motor skills have been pretty advanced comparatively, he was rolling up onto his side pretty early on. I think having to lift the brace has strengthened his core quite a bit. But I guarantee he’s going to love the extra freedom and mobility once he gets it!

Funny story: I once tried to put him down for a nap during his free hour and he wouldn’t/couldn’t sleep — I think the weight of the bar is something he’s gotten so used to that it was disorienting to try to sleep without! I’ve heard similar stories from parents of older kids, toddlers crying about their bar when a parent forgot to put it on. It just goes to show that children really do adapt: if this is all they’ve ever known, it’s just life!

We tried to take advantage of those rare moments of freedom: bath time, walks, play, and our most recent discovery: swinging!

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I’m sure we’ll get to a point where putting the brace on will become a real struggle (he’s already getting pretty wiggly now that he’s rolling over!) but I am looking forward to a new phase, unencumbered. And yes, I just bought his first pair of shoes… and they are stinkin’ adorable.

Good luck baby Jonas, here’s to more freedom soon!

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Clubfoot

No More Casts!

Well it’s official: Jonas is done with casts and his feet are corrected! That doesn’t mean we’re done yet, but just look at those beautiful feet…

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Free at last! You can kind of tell his legs took the shape of the casts and there’s a teeny bit of bruising and wrinkling on the top of his feet, but overall he came out in amazing shape. (and it all normalized in a couple of days) Just for a little perspective, this is the difference six casts in two months made:

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Pretty amazing! Not that he seemed to mind the casts so much by the end, but I was certainly glad to be rid of the stress of not damaging them, not being able to bathe, worrying about making it back to the clinic before it was too late (you can only keep them on for so long before they grow out of them) and so forth. But by the end of this portion of his treatment, they had basically become an extension of his legs 🙂

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I’ve said it before and I’ll say it again: it is incredible how resilient babies are. Our sweet Jonas has had such incredible patience and calm throughout all of this. There were definitely rough nights along the way, but he amazes me.

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Funny side story: a grad school friend of Andrew’s was so kind and offered us a hotel stay using her points when we went down to the clinic this last time (it definitely adds up over time), and we were very grateful to take her up on it. So we drove down the night before, and while we were eating breakfast and getting ready to head to Shriners, Andrew came back from loading up the car to announce someone had broken into our car! My heart dropped when I realized I had forgotten to bring up my camera bag with us the night before — I never leave it in the car, but of course the one time I did… But get this: miracle of miracles, someone must have scared the thief away, because all they got was our snack bag! Joke’s on them, I can just imagine their face when they opened up what they probably thought was a purse to find… fruit snacks and a clementine.

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Really, it’s a whole series of tender mercies because 1) they didn’t take anything of consequence (I was almost in tears when I realized I had left my camera in the car), 2) Andrew happened to decide he wanted to load up the car before we ate instead of checking out after on our way out, like we usually do, which meant we were only a few minutes late to our appointment that morning 3) at least we only had to pay for the window and not the window and a hotel stay and 4) we got in pretty quickly to a repair shop that day, had a family lunch at Denny’s while we waited, and were able to be on our way. What a day though…

Anyway!

We got to Shriners and a tech swaddled him up and sawed off his last set of casts. I couldn’t wait to see what his feet looked like after all those weeks. (Adelina not so much apparently. Ha.)

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Jonas was perfectly calm as usual — something about the really loud, vibrating saw must be soothing!

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Then someone from the orthotics clinic came over to measure and fit him for his brace, and we went over to wash off three weeks’ grime.

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New sensations! Now he can bend his knees, but his legs need to move together. This brace (commonly called Boots and Bar –Mitchell boots and a Ponseti bar — or BNB) keeps his feet turned out and his heels pressed down to maintain the correction. Relapse is extremely easy when they’re this little and bendy, so that’s why he’ll be in BNB 23 hours a day, then only for nights and naps after about three months, until he’s four.

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It’s still a long road, but the added mobility and convenience are amazing! We can have new shoes shipped to us as he grows, he can have baths, we get to take it all off for some free time, the bar snaps right off when I’m changing or dressing him… life is pretty great. And the best part: we don’t have to drive to SLC weekly anymore. We’ll just go in to make sure everything’s on track every few months from now. That’s not to say we don’t love our doctors and nurses and techs who helped Jonas during all of this!

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Dr. Woiczik (above) was there at the beginning and end of casting, which is kind of funny because technically our doctor was Dr. Hennessey, but due to scheduling and travel issues it ended up being half and half exactly. We trusted both of them completely though, and we were in such excellent hands. Both of them were extremely professional and caring — I was really impressed for example when we came in for our second cast and Dr. Woiczik popped in to see how the first week had gone even though our appointment was with Dr. Hennessey. There was also a PA named Jamie who assisted at times, I’m assuming she was completing a residency because she was training under other doctors, and she was also great. It gave me a lot of confidence that they coordinate on cases and work together.

I’ve mentioned before that I’m on a Facebook group for clubfoot moms and I’m absolutely shocked at some of the stuff you see out there — doctors treating clubfoot with improper techniques (the Ponseti method is the only proven treatment) or variations of the correct treatment (like only casting from the knee down, which won’t cut it at this age) that end up making their cases worse, clinics that don’t even use proper orthoses (“oh just buy a cute pair of shoes you like and we’ll screw a bar onto it!” <– not joking, that’s a real quote), and so forth. Feet that are absolutely not properly corrected by doctors who claim to be Ponseti-certified, repeat tenotomies and surgeries at later and later ages… It’s sickening. I am SO grateful we happened to live relatively close to not only a good care provider, but also a Shriners clinic, which means we don’t have to spend a fortune on the boots and bars (they have a special program to pay for them after charging our insurance, which is such a huge blessing).

I used to sort of roll my eyes at “clubfoot awareness” because I thought, “OK, tell people clubfoot exists, voilà. Do we really need special ribbons and stuff? We’ve already found a cure/treatment, this isn’t exactly brain cancer!” But I’m realizing what’s still needed is awareness that not just anybody can fix clubfeet — and certainly a community of people who know what it’s like helps. The Ponseti method is time-tested and it’s how it’s done, period. Anything else is bad news (until we see studies on any other techniques), and apparently a lot of doctors think they can just make it up as they go, and parents and children are suffering for it. If you are starting off treatment for a clubfoot infant, you can find a list of providers here. Some excellent resources for parents — compiled by a group of parents with a lot of combined experience — are also found here.

Anyway, off my soapbox for now. And there we have it: one happy boy (three months already?!), and a family that’s breathing a little easier! Onward and upward!

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Clubfoot

Final Set of Casts and Tenotomy

Well, final set assuming all goes well. But our treatment has been textbook so far, and I’m incredibly grateful we haven’t had to deal with complications. After cast #2 it was really just smooth sailing. We all got used to handling him with them on, diaper changes and all, and Jonas doesn’t even seem to notice them anymore. Usually the night/day after casting might be a little extra rough but nothing really that crazy. Plus the kid is still a newborn, remember? That’s a crazy of its own anyway!

This last and sixth set of casts was the hardest emotionally though, because this time the doctor performed the tendon lengthening procedure (or tenotomy). I explained it before, it’s basically just a quick snip of the Achilles’ tendons with a scalpel, but I still felt so bad for him! That does not sound pleasant at all.

To add to our stress, Jonas was sick that week and it didn’t even occur to me until the morning we were supposed to drive down that it might be an issue. No fever or anything, and he was only going to have a local anesthetic but still, his immune system was already fighting on one front. I called the clinic and the nurse coordinator said we should be fine, so we packed up and drove down anyway. Oh, and here’s the other major stressor we were dealing with that day: it was the day after a big snowstorm. The roads had been plowed, but that did not mean they were clear.

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Yeah… lots of fun. This is one of the challenges with living in a low-population state in a rural area — there just aren’t enough plows to cover these vast stretches. The trip took us 3.5 hours instead of the usual 2 because we had to take it veeeeery slow. I was a ball of nerves half the trip, doubting whether we should have set out, but we definitely felt all the prayers from our friends and family on that trip. Then, we crossed the state line and roads were clear again! Phew!

So to recap: a harrowing trip over a frozen tundra, two sick kids, and surgery. What a combo. We made it a little bit late but I had been updating the clinic the whole time, plus it turns out there were several no-shows that day due to the weather, so they were able to get us in and taken care of. (Shriners staff are incredible and so understanding, we will forever love them for what they’ve done for us and our son!)

I finally relaxed a bit. A technician removed his casts, we gave him a bath, and then she applied a numbing cream to his heels and we were sent to the lobby to wait 30-45 minutes.

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It was so strange to sit there and hold him in my arms without the bulk of those stiff casts, and to see more of those sweet little toes for a change. Jonas promptly fell asleep after nursing and I enjoyed a little bit of calm while my husband took our daughter to the cafeteria for some lunch.

Then the doctor came out to take him in for the procedure. I said a silent prayer he wouldn’t be too miserable. It was a matter of fifteen minutes before a technician came back out to bring us back for the casting. The doctor was rocking him, and he was still asleep! She said he had cried some but not as much as babies usually do, and clearly he wasn’t too traumatized because he was snuggled up in her arms. What a reassuring sight!

The hardest part is what came next. Putting on plaster for casting isn’t painful in and of itself, but watching him scream while the doctor stretched his foot into position while it dried was heartbreaking. I was right there keeping him calm, but I could tell it was painful for him, despite the numbing cream and shots. His doctor explained there’s only so much the anesthetic can do when you’re manipulating and stretching like that.

It’s hard to stay strong for your little ones sometimes, but you have no choice, so you hold them and let them cry.

The casting was brief though, as usual, and soon he was fast asleep again. We wrapped him up into his car seat, scheduled our follow-up appointment, and headed to a nearby hotel to spend the rest of the evening. (No way were we heading back on those roads in the dark!)

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The night was rough; being out of the normal routine makes for a fun bedtime with a toddler… but Jonas did quite well all things considered, and the next morning, when we got home and were able to relax again, he was all smiles.

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This kid! In fact, you would never know he’s had a minor surgery since then. His nights have been pretty much the same as usual, he’s had some fussiness at times, but truly, it’s incredible how resilient babies are. I am so glad we did push through to make it happen last week, because this week we were hit with Snowmageddon 2017 and there’s no way we could’ve made it. I’m glad I was able to hunker down at home with our sweet children and just wait it out, waiting for Jonas’ feet to heal and regenerate.

And that 90° angle? That’s a normal foot position. It’s the first time his feet have ever been able to reach this position. After three weeks with this cast, if all has gone well, we will be DONE with casting, and his little feet will be fully corrected! Then, it will be on to bracing to prevent relapse for the next few years. In the meantime, we are loving NOT having any more weekly trips to the clinic. Here’s to new feet for a new year!

Clubfoot

Clubfoot Casting #3 — Cast Removal

Another successful visit, and we made it in and out in between snowstorms: talk about impeccable timing! I’m starting to notice a pattern: the night after casting is typically pretty rough sleep-wise (only sleeping 20-45 minutes at a time… yikes!), but I wonder if it’s also partially due to the disruption of all the travel, interrupted naps, etc. The day/morning after can be a little iffy too, so I just don’t plan to get much done. Otherwise he really doesn’t seem to be too upset about all this — it’s amazing how resilient babies are!

I took a little video this time around. Cast removal sounds scary — that’s a noisy saw! — but it’s really not a big deal. Jonas is super chill about it, probably because it’s great white noise.

How about that awesome spit-up nose bubble at the end?! Ha ha. Good thing it was bath time next!

His feet are coming along nicely. It’s a little sad to see the bruising and creasing, but most of it is just dried/dead skin, etc. so really nothing too scary.

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The doctor thinks at this point he’ll likely have the standard six casts, so that means he’ll be done with casting (fingers crossed) by the end of January! And then we start over with a new experience: boots and bar (brace). It’ll be nice to be able to give him full baths at home though 🙂 And I’m pretty sure he loves the freedom… as soon as those casts were off he was just content as good be to kick and wiggle around — hence the blurry photo!

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Three casts down, three more to go (hopefully)!

Clubfoot

Clubfoot Casting #2

We made it through a week with casts, so it was time to head back for more! More watching the forecast like a hawk, this time with an appointment change so we could get past the mountains before snow hit, and it was time to drive down to Salt Lake City again. This time we made it in a day and generally travel went smoother — Adelina even fell asleep on the way home!

So this is what Jonas’ poor little feet looked like after a week in casts.

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The photo doesn’t actually look half bad, but his poor ankles were quite purple and bruised. He handled the process pretty well though, and has generally taken to his second set of casts quite well compared to last time: I guess we’re all getting the hang of this.

Here’s how it works: the nurse uses a saw that has two discs that vibrate and shred the cast — they are pretty much impossible to cut skin with, the nurse demonstrated by scraping it on the palm of her hand!

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Then she splits the casts open, which she explained can be a little unpleasant since the baby’s knees get stiff from holding that position for so long. He didn’t see too upset though, and generally it went easily enough.

Then you get a chance to give your baby a proper bath — poor kid can only have sponge baths otherwise. Adelina was very interested in helping with that! (Yes, she was in PJs… we literally grabbed her out of bed at 6 AM and got in the car. Long day!)

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Honestly the toughest part was putting on new casts: you could tell his poor feet were pretty sore and he did not enjoy having them handled so soon. But even then he calmed down after a little while and pretty much fell asleep.

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We decided to keep his first casts: someday it’ll be pretty neat to see how far he’s come and how he’s grown.

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And that was pretty much it — we were on our way home after that! And I’m hopeful at this point he won’t need the maximum amount of casts: the doctor said his feet were stretching nicely at this point, so we’ll see how it goes! One can hope, right?

Clubfoot · Motherhood

Starting Clubfoot Treatment for our Son

It’s been a pretty wild couple of days, but here we are: we’ve taken the first step in getting our sweet boy treated for his bilateral clubfeet.

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A little background info, since this was all new to me until I had no choice but to get intimately acquainted with all of this: Clubfeet are treated in the US with the Ponseti method, named after the doctor who invented it. It basically entails a casting phase, which lasts approximately two months + depending on how severe the case is, a minor procedure, then two brace phases. The beauty of newborns is that they’re super soft and pliable, so this condition is relatively simple to correct: it’s basically a question of stretching the feet into position, with a series of casts — so they change them weekly, stretching the feet a little more each time. The doctor will then likely do what’s called a tenotomy immediately before the last cast, which is a minor procedure where they basically clip the Achilles tendon because it’s typically too tight. They do it right there in the doctor’s office! That part sounds pretty rough to me, but some parents say it wasn’t a huge deal, so here’s to hoping… Then it’s the boots and bar or BNB phase (special shoes connected by a bar to keep the feet from relapsing, it’s a sort of brace essentially) for 23 hours a day for several months, then once they start getting mobile (ish, depends on the case again) they can wear them when sleeping only, until about 4 years old. The casting phase is the most intensive and where the real change happens, and from what I understand once the casts are off all the rest is essentially intended to prevent relapse, which small children are especially prone to. I’m just grateful that surgery is reserved for extreme cases and that it can all be taken care of with orthoses and a lot of diligence in following the program. (More details here)

Of course, “simple” doesn’t always mean “easy”!

Phase One: Casting.

We made sure to have Jonas’ two-week checkup a day early so we could get his follow-up PKU test before the casts were in place. He weighed in plenty healthy (this kid can eat…) and everything looked great, so we were good to go for the casts!

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And we enjoyed our last day with those sweet little feet… I’m so glad we did his newborn photos early (can’t wait to see them!), because as much as his feet are “deformed,” I can’t help but find them perfectly beautiful. Is there anything sweeter than a baby’s feet? I also remembered just in the nick of time (seriously, half an hour before hitting the road…) to make this footprint ornament so we could remember those feet for years to come.

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I’m in a Facebook group for clubfoot moms and one thing a lot of them say is to document and keep mementos, because one day you won’t believe everything that you’ve done and how much has changed. Plus, we made this same ornament with my daughter when she was a newborn (well, 2 months old…) so it’s become a bit of a tradition!

Traveling for treatment is incredibly stressful, especially in the winter when you have to drive from Wyoming to Utah via a mountain pass… I had quite a bit of anxiety about the trip, and there was snow forecast in Utah for the day of our appointment so we decided to drive down the evening before. A lot of friends and family were praying for us, and it turned out we had amazing roads the whole way — clear as could be! Thank goodness too, because it was a really long, exhausting day. It is so good to be surrounded by caring, supportive people: it makes a world of difference.

We arrived at Shriner’s Children’s Hospital about half an hour early on a Thursday morning (they do their clubfoot clinic on Thursdays only, so at least we’re set schedule-wise!). There is a playroom and some activities for Adelina, so my husband was able to easily keep her happy while I dealt with paperwork and being redirected several times before finding the right desk. We finally go back to meet our doctor and she answers questions and talks us through the process before we go to the casting room to get started. I’ve been lucky enough to never break a bone in my life, so I’ve never seen a plaster cast applied, it was pretty interesting to watch.

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“What are these people doing to me?”

My husband held his other leg so it would stay out of the way and the nurse swaddled his top half to help him stay calm. He wasn’t too thrilled to be pulled and prodded at first, but once I gave him his binky he basically slept through the whole thing! It’s nice to realize he’s so flexible that it really didn’t seem to hurt him at all. Those babies are pretty resilient…

The doctor put on a mesh padded tube-sock-type sleeve over his whole leg, then started rolling plaster-soaked gauze around it, all the while stretching his foot into a gradually more natural position and smoothing out the plaster.

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This is really weird, but we quickly learned that plaster heats up quite a bit as it dries, then gets cold as it cures. Also, as the plaster dries over the first day, the casts get quite a bit lighter. I thought they were pretty heavy but they’re not that bad once they’re dry.

Once we were all done, I nursed him a little and he fell back asleep. The nurse who coordinates the program gave us information and advice, and we were done!

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The whole thing is a little flaky the first few hours but once it’s cured, it’s rock hard. One reason we took this picture is you need to be on the lookout for slippage: if the casts slip (which they do quite a bit apparently) then your poor little one’s feet are being forced into a bad position, not to mention they could develop sores from rubbing, etc. so the casts have to come off and you need to get fresh casts. Kind of a nightmare situation if you have to travel from out of town, it could mean extra casts… So we watch the toes to make sure they’re still sticking out. Plus baby toes are just so cute, who doesn’t want to see them!

Some tips I’ve since learned:

  • Diaper-changing with casts is tricky at first, but I got the hang of it pretty quickly. The nurse told us not to flare the diaper edges around the legs to avoid extra leakage. That was one of my big fears: how to handle blowouts and leaky diapers with casts, but not flaring the diaper helps, and the CF moms also pointed out baby legwarmers: stylish AND functional!img_2673
    (Babies are so crazy flexible…) If anything leaks, it gets on the (easily-washable) legwarmers, not the casts. Genius! Also, not worth putting pants, onesies and legwarmers do the trick. And of course covering up those toes with socks helps keeps them warmer.
  • Baby nightgowns make nighttime changing a lot easier.

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    Footie pajamas are kind of a pain at night anyway unless they have a zipper, but since their legs don’t bend at the knee with the casts it’s hard to get them in and out of pant legs. Just make sure to not get the tiniest newborn gowns, they don’t have much wiggle room.

  • Babywearing helps. I know not all babies are like this, but I hear a lot are pretty miserable at first — poor Jonas was a screaming mess for three days, to the point that his poor little voice got very hoarse. Tylenol every six hours (obviously check with your physician first), some gas drops (they can’t bend their legs so it seems like they tend to get gassier — again, some great wisdom from other CF moms), and babywearing really helped us. Just make sure their legs aren’t dangling. (There’s a Facebook group for this too: Babywearing for Clubfoot Babies)

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    Super duper awesome bathroom shot for illustrative purposes. 

The good thing: I think we’re over the hump now. Our boy is back to his sweet self today, and I’m hopeful the next cast won’t be as difficult for him as he adjusts. Here’s to hoping he doesn’t need too many casts!

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