November and December were rough and as a family we are so glad to put 2016 behind us. We completed 3 castings in a month to get the Habanero’s intoeing on his right foot corrected during December. The compromise for us and our doctor was to have plaster casts wrapped in fiber; by the time the lil man finished his last set he was walking around with full leg casts on. They didn’t slow him down a bit!
What did slow us down was all the illnesses we ended up with between Thanksgiving and Christmas. Every week it was something new, Roseola, Ear Infections, Fevers, Pink Eye (twice) and finally the week of Christmas and the last week of casting the Norovirus. Let me tell you what a great pleasure it is to have a child that won’t stop vomiting in casts. You can’t bathe them – so you end up with a kid that smells like puke that wants to be held all day and all night.
Norovirus, if you’ve never had it or heard of it – is a stomach bug that can last anywhere from 24 hours to 3 days (for most) in which you pretty much spend the entire time with stomach cramps and/or vomitting with unrelenting diarrhea. My husband was nice enough to bring it home from work and I got it and so did the Habanero despite our best efforts to prevent it’s spreading. Nothing works for over the counter medication to stop the symptoms… or at least it didn’t for us. We ended up in Urgent Care the night before we were supposed to get the Habanero’s casts removed with a dehydrated and withering baby. He was so dehydrated (even though we had been actively trying to prevent it) that they couldn’t find any place to put an IV in after 3 failed attempts.
How did we know the lil man was dehydrated? He would cry and have no tears and was uncharacteristically lethargic. It was scary to see him in such bad shape and as a parent nothing is worse than feeling so helpless. After a dosage of Zofran, the Habanero was finally able to keep down a little bit of water and pedialyte. We spent the next 3 hours at the Children’s Hospital squirting water into his mouth with a syringe every 5 minutes until he finally perked up and started to act normal again.
All this was very frustrating as you can imagine, especially because I had been harassing my husband to keep an eye out for dehydration symptoms and had even called the pediatrician concerned the morning that we ended up going to the ER but was told to call back the next day if the Habanero still had a fever. Needless to say, I spent my weekends making up work hours and even worked Thanksgiving because I had run out of sick time for the year and had no other options for staying home with my sick child. We have started out January with Bronchiolitis, Pneumonia and Pink Eye.
Had I the chance to go back in time I could say I would want to change history to not have experienced all this, but in retrospect I find gratefulness. This illness, (probably the only real major one that we experienced as a family so far) really made me appreciate everything we have so much more. It also put a spot light on what a fighter the Habanero is.
Even when this kid couldn’t keep down less than an ounce of water he still kept trying to drink and eat. He was desperate in his search for water – at one point we found him drinking out of the dog water. It was disheartening for us as parents to not really know what to do. The only thing we could do for him without consequence was to wet a paper towel and let him suck the water out of it so that he could keep it down. He would have drank from a fire hydrant if you let him but even in a state of dehydrated lethargy he found the energy to fight for what he wanted. He got really mad anytime he saw water and was not allowed to have it and threw a tantrum like you’ve never seen. It probably sounds odd that I would be grateful for such desperation, but I don’t really know how to explain it so that it makes any sense.
No parent wants to see their child suffer, but in the times throughout their life that you get a glimpse of how your child deals with a tough situation you can’t help but be proud of their stubbornness, fortitude and passion. After all the club foot treatment, you’d think that I would have already seen this ability to overcome adversity in my child but this opportunity really awakened me.
At 18 months we are going into casts again. Now that the Habanero has been walking it makes this session particularly difficult. It’s so hard to see the little guy crawling again but I think it bothers us more than him. We recently decided to see a new doctor who is a little further away from home rather than just going to the local Children’s Hospital for treatment. I feel like we were getting over charged for our visits to the Children’s doctor – $350 a visit WITH insurance. We really liked our PA, but the fact that it took a month and half to get an appointment to see the doctor each time we finished a casting session (3-6 casts for us) was pretty frustrating. This treatment session is due to the little man’s right foot intoeing, he’s been tripping over it quite a bit.
So we decided to start casting with a new doctor and so far it’s had it’s own points of frustration. The first session was only supposed to take a half an hour but it took an hour. It’s a hour and half drive from our home, so it pretty much shoots an entire day for one treatment. You can imagine when you are casting every 10 days (and trying to work full time) it’s quite a time commitment.
The Children’s Hospital used fiberglass casts which were pretty rough in texture so they scratched up everything but at least we got to pick a color. The padding used around the edges for this type of cast was much preferred for us; it didn’t come out and it didn’t fall apart. The little man was casted from his upper thigh all the way down his leg with his knee bent and foot abducted. The fiberglass casts were much smaller than the plaster. The only problem we had was that with our last session our little Habanero figured out how to wiggle his legs out of them several times. These sessions costs us about $150 out of pocket with our insurance.
This new doctor does plaster casts. Same length of the cast, but there is no additional padding other than some cotton and fabric to the inside of the cast which means that when our little guy started to move around on day 2, he also got some nice red line rub marks on his groin from the cast chaffing his legs.
I tried to relieve the rubbing by adding some foam weather stripping to the top of his plaster casts which seems to be helping but doesn’t stay on very well. After 3 days of wearing the plaster they were pretty much starting to break down not only on his knees but in the ankle area because of all the movement. With his crawling the plaster was flaking off everywhere and it’s all over the bed and carpet. And the fabric used as part of the cast is coming off too, so I had to duct tape his knees to prevent it from completely breaking down. I can’t really speak to the costs of the plaster versus the fiberglass yet because I haven’t gotten the bill.
One of my biggest gripes with the plaster though besides its weakness for a crawler and the messiness is the size of the casts. The plaster is much bigger and thicker than the fiberglass and so finding pants and socks to put over them really sucks. Two sizes up sweatpants are the only thing I can find to fit, and they must be loose leg. As for socks we are wearing some of dad’s old ankle socks. It’s actually kind of difficult to find sweatpants with elastic on the ankle these days I guess they are out of style now.
Finally, we were told that it would reduce our appointment times for the plaster if we removed the casts ourselves with a little soak in some warm water and vinegar. This is different than the Children’s Hospital; there the cast was removed by the PA and then we were given the opportunity to bath our little guy before the new cast was done. So now we are expected to remove the cast and make sure the bathing is done before we go to our appointment. Well I’m already waking up at 6 AM to go to our morning appointments for this new doctor and he says he wants the casts on until an hour before his appointment which means I’ll probably have to wake up at 4 AM just to get that all taken care of the day of.
Needless to say… something has got to give and I’ll be making some changes to the treatment plan this week because I just can’t see doing this for another month or two. I’m going to try and get the Habanero casted at the Children’s Hospital and only go up to the other doctor for evaluation. With the holidays and preparations for a new baby underway I just don’t think I can physically do it all, but I know that staying on top of treatment is important so we’ll have to compromise something. The new doctor told us that we could be doing casting on and off potentially until age 4 if we don’t get very strict about using our boots and bar at night, so that’s another challenge we’ll have to overcome in the near future.
We struggle with stretching the Habanero regularly, mostly because when we try to do it he fights us and refuses to relax his feet enough for us to be effective. The doctor recommended we do it at diaper changes, which would be nice and regular but we’ve got a kid that hates to be laid down for a diaper change so most of the time he’s trying to figure out how he can sit up and crawl away. Man, I sure sound like I’m full of excuses don’t I?
We have an appointment scheduled to see one of the top docs in our state for Pediatric Club Foot treatment coming up, and I’m interested to hear what he has to say. For now, I thought it would be helpful to share (and remind myself) of the stretches we are supposed to be doing daily with our little man. We’ve noticed one of his feet seems to turn in a little more than the other and since he’s started walking he stumbles often and gets tripped up by his own feet. Hopefully if we can get into a more regular routine with these he will not have these issues.
This week the daycare is going to start water play in the afternoons and they’ve requested that we bring the appropriate attire (including water shoes) for our children to get wet it. We had a pair of Stride Rite Sandals which we had previously purchased for summer that unfortunately got left in our rental car on the way home. It would have upset me more, but they never really stayed on the Habanero’s feet very well anyways. The problem was the back strap just allowed his feet to slide right out. Needless to say I don’t recommend them for club foot toddlers with underdeveloped Achilles tendon.
So I started looking around for new shoes to bring to school that were not incredibly expensive, and of course the natural go to for a toddler water shoe would be a Croc. Or at least that’s the first thing that came to mind. The problem is that the back strap of Crocs are not typically adjustable, and I think that is an important feature to have for a club foot baby. Something like this, which has an adjustable back strap would have been a better investment so I’m going to try them next.
After looking at several variations of Crocs and Croc Knockoffs, I am glad that I decided against purchasing them not just for the non-adjustable back strap but also because I found out that they are really bad for your feet to wear for long periods of time. I found this article which I thought is important information to share with other Club Foot – or any parent really. You might be surprised, as I was, considering that Crocs have always been marketed as a really great option for your feet especially to those who spend all day on them.
A new parent has a lot of questions in their head already and finding out that your child has club foot adds a million more. You can read guidance from the medical community for days but none of that really tells you what the day to day life will be like. Even community support groups give little insight on what you will struggle with daily having a club foot child. It’s important to remember, every day, that your child has unique needs because of this – even after treatment is “completed” and their feet look mostly normal.
There is a lot of regression when it comes to club foot treatment, so amongst other things you do daily like brushing your baby’s teeth and cleaning their ears you have to remember to stretch them and keep them in their braces. I have to wonder if the whole brace (Ponseti bar and shoes) thing really even works for anyone though? Our experience has been that it was pretty much damn near impossible to keep the Habanero in his. Short of strapping his shoes on so tight they left marks on his little chunky feet nothing worked.
This last round of casting (at 11 months) he had was hard too because he kept taking his feet out of them. Even when they glued the cast onto his skin, he still managed to slip his foot out twice. His feet look pretty much normal at this point, with the only noticable differences being the position of some of his toes and one heel which is still not as prominent as the other.
That heel, is a constant struggle. Even though he meets the requirements for a treated club foot child, (he gets the appropriate angle of dorsiflexion on his feet) there is still some frustration related to his one foot. Shoes always slip off, and we’ve tried pretty much every kind of shoe there is. The only shoes we had that didn’t come off were the soft soled Bobux but those were really only good until he started taking steps and walking. Our daycare wants him to have close toed hard soled shoes for the playground and classroom so they aren’t really an option anymore.
If you know you have a club foot baby coming in advance, tell your friends and family not to bother buying baby shoes for you because you won’t get the chance to use any for the first 3-4 months while your child is in casts. And then, when they do come out of casts you’ll probably want to buy something that will stay on for times when they aren’t in the brace.
Clothing wise, because your baby will be casted up past their knee to essentially the top of their thigh you really won’t want to have anything but onesies for that first couple months. If you do decide to buy something pant wise – the footed pajamas in a size bigger than what your child wears will be helpful to have. These will attract much less attention than carrying a baby with both legs cast and reduce the amount of pity stares.
For socks you’ll probably want to find some that have little rubber grippy on the bottom of the sole, this will be useful when you are trying to keep your child’s feet in their correction shoes after the casting is done. Try to find longer socks, that go up pretty high to about the knee too, because the straps on the correction shoes go up pretty high and it will be more comfortable for baby. Old navy sells this kind of sock, that was the best place I could find for decently priced socks.
For my first posting about club foot, I wanted to give a little insight on why I decided to include this in my blog. At my second to last ultrasound during my pregnancy, our tech told us that we were going to possibly have a child with club foot on at least one side. She couldn’t confirm whether it would be both feet. In fact, 50% of cases of club foot are bi-lateral (meaning on both feet). We left our appointment feeling pretty shocked and very upset. What did club foot mean anyways? Sure we would immediately look up medical definitions online after leaving the office but that was no help.
Did this mean that our child would have a hard time walking? Would he be able to play sports? Why did it take so long before someone mentioned this to us? We had been getting very regular ultrasounds throughout my pregnancy because of the size of our little one but this was the first we were hearing that there might be any abnormality with his legs.
I’m not sure if it was just an oversight or if it’s something that developed very late in the pregnancy as he grew. Either way, needless to say the online information was not really very helpful. So I started searching famous people who were born with club foot disability and I found a handful of athletes who have been very successful in their careers : Mia Hamm, Kristi Yamaguchi, Troy Aikman, Pat Summerall, Leroy Butler to name a few. This was comforting news to a parent with so many questions.
I remember feeling such disappointment as I heard one of the nurses exclaim, “He’s got club feet!” after he entered this world. Being a C-Section, I didn’t get to see him come out, and hearing that put me into immediate tears. Even thinking about it now wells me up. As it turns out this test of parenting would only be one of the many so early on. As a mother, I felt like I had done something wrong. Why didn’t I grow him right? Was it something I did when I was pregnant? Would my child have a lifetime of obstacles because I messed something up? I drank my water, I took my vitamins. What happened?
Nothing I could find online talked about these feelings I would have or if it did, I guess you could say I was guilty of not doing very in-depth research in advance mostly because the tech had said he might have it. Well there were a lot of “mights” during my pregnancy and thank God none of them came true except this one. Despite this being a clear and present defect at birth my pediatrician told us to wait to see an orthopedist. Can you believe that? She said, “it might fix itself”. Clearly this something she had never dealt with in the past. As it turns out… these things don’t fix themselves.
Since I didn’t know any better, I took her word for it. We waited a month, and at his 1 month appointment I finally convinced her to give us a referral to see an orthopedist. On our very first appointment we were told that he was glad we had brought our son in so early, but he told us that we should have started him on the treatment immediately after birth. Again, feeling like I had failed as a mother by not having my child’s best interest at heart I was disappointed.
As the next couple of months whizzed by I rarely left the house, especially not with my son, because I didn’t want to have to deal with the attention I realized we got very quickly by having a child in full leg casts. Every time we did go out, I tried very hard to cover up the casts with full leg pajamas or blankets.
Even still, I find myself struggling with this as he is in casts again. I can tell you what helped the most in those early days is that when people did see his casts, they would assure me that everything would be okay. Several of these strangers had experienced club foot themselves, or known someone that had and they made a point to reach out to me – wherever we were – and comfort me. With every confirmation, my confidence in their statements was built up more and more. And so, probably the most important bit of information I have to impart on this blog about club foot to other parents or family members of club foot babies is that everything will be okay.
Seek the proper treatment for your child early, do what they tell you to do (unless you feel it is wrong as a parent, use your instinct!). Your child won’t have any sort of delay in their learning to walk or any other ability if you do. Despite the Habanero being in casts, he gets around just as well as any of the other babies in class. He stands just like they do and true to his age and gender still gets into everything!