Paying it forward

Although we haven’t used his boots and bar for 2 years, I still held on to every pair. In the beginning, I held onto them for the fear that my second child might need them; and then as time went I simply forgot I had stashed them in a closet. Well, the time has finally come for us to pay it forward.

This week we sent off 4 pairs of boots and 1 bar to the BRACE Clubfoot Foundation. They provide boots and bars, at no cost to families undergoing treatment. I know how expensive each pair of boots costs and how little insurance covers so I’m so happy that these will go to a family in need. What’s also wonderful is that they’ll clean them and replace the straps if needed, all you have to do is send them in.

In addition, we also donated 28 pairs of leggings and 18 snap-up outfits to 7 different families. It feels so personal because we know exactly what these families are going through and how helpful these items will be to them. I simply posted them in a CF Facebook group, and sent them to the first 7 people who responded.

Of course, it feels good to pay it forward, but it was a great learning experience for my kids too. I went back on old pictures to show them when Carson wore them and how we’re now donating them to other little babies who need them. I hope that if you’re a CF family you’ll considering donating and doing the same.

Four years old

It’s been two years since my last update and I apologize, life has been busy. Carson is four years old now and his sister, Evelyn, is two already. My house is constantly in a state of chaos and writing has not been a priority.

Two years ago when we had Evelyn, we also stopped wearing the BNB. Life got hard and we got lazy. We were tired and tried to balance life with two young kids and we just couldn’t do it. Together, we made the decision to just stop. We agreed that if he should relapse there would be no blame game and that this was the right choice for us. We knew/know the consequences and we realize it’s a gamble, but we hit a breaking point.

Every six months we still continue to visit his orthopedic and luckily we haven’t had any bad news. He’s mentioned doing a possible tendon transfer surgery in the future, but nothing at this time. I will say, one big frustration I have with this whole journey is the medical cost. Even with insurance, his 10 min foot exam, every six months costs us $160. That’s a lot to me, especially since it feels like just a follow-up, but we continue to pay because it gives us some piece of mind.

It’s hard to say if the outcome would be different if we had continued bracing. I read a lot of stories and many people who do brace religiously still need the the surgery too, so… I guess you just have to do what’s best for your family and hope for the best outcome. By no means, am I encouraging you to stop bracing before the recommended timeframe; I’m aware of the the statics and I do believe the longer you can brace the better.

In regards to Carson, he’ll be starting his second year of preschool and has recently started playing soccer. He is a quick runner, loves to climb, and jumps off anything he can. There is absolutely no delay or obstacle from his CF. He’s never mentioned any pain from his feet and has no insecurities about them.

It will be interesting to find out in the next few years if he will need the tendon transfer. I have a deep fear of it, but I’ve heard positive results and outcomes.

Thanks for reading and keeping up with our journey!

A new year and a new baby arriving.

Just like every other year, time just seems to fly by! Here we are five months into the year already and I’ve had little time to write about Carson’s clubfoot journey and I am about to have another one. For those of you who don’t know, Carson will be a big brother soon, Baby Girl Cross is due in 2 weeks and we can’t wait!

Of course, we are excited to add to our family, however the first four months of this pregnancy brought me a lot of stress and anxiety. I spent countless days and nights thinking about whether she would have CF or not. I know I was the only one who was concerned, but how could I not be? Though I know it’s not hereditary (In our case), I knew that it could possibly happen again. My husband and the rest of my family and friends shrugged it off, but in the back of my mind I was terrified. Some people tried to comfort me by saying, “You’ve already been through it, so this time will be a breeze,” or “The treatment was easy, look at how well Carson is doing,” both statements could be further from the truth!

In early January, we had an anatomy ultrasound and found out she does not have CF. I was so relieved and overjoyed. I wanted to cry tears of happiness, you can ask my Husband, I couldn’t stop smiling! To know that she will not have to endure any of the treatment and to see her straight little feet is something, I think, only a CF parent can truly appreciate.

Now, you might think I’m crazy or overthinking this whole CF thing, but let me explain…We are not professionals at this whole CF thing, it is not a breeze. Sure, Carson tolerated most of it pretty well, but even till this day it is a daily battle and concern. Behind closed doors we are fighting with him to get our 12 hours of bnb in. The older and smarter he’s gotten, the more of the struggle it has been. In the middle of the night he will cry and scream to take them off, and some times he can take them off himself. Some how, I thought that things would get easier as he got older, but we are in a stage right now where he can’t fully communicate so he doesn’t understand why we do it.

Some nights are extremely rough. Some times I’ll remove them, set an alarm for an hour later, wait until he’s in a deep sleep again, and then put them back on. It’s extremely exhausting and I’ll admit some nights we are too tired and forget to put them back on at all. What we’ve resorted to doing is putting the bnb during naps now, some thing we did not do before. Typically, he’ll nap for 2-3 hours now, so we feel that this is one way to make up the 12 hours. Also, because of his BNB he has does not sleep through the night. He has never been a good sleeper, but I do know he sleeps much better when they’re off, but for now it means Mom doesn’t get to sleep through the night either.

Now a days, it’s easy for me to forget the tough days and nights in the beginning, but I know for sure I would not want to have any other baby or parent go through what we did. The fact is, no one wants to put their child through any kind pain, they don’t want their kid to be any different, and they don’t want to go through 4-5 years of what-ifs; so that’s why I am extremely relieved and excited that our baby girl will not have to.

Last month, we also went in for our routine 6-month check-up for Carson’s CF. Each visit I am nervous and concerned by what the doctor might say. Both feet, however, are still looking great and still maintaining their flexibility. His left foot might pose a slight problem in the future, because it tends to curve in on the forefoot more, but as of right now, they are as perfect as can be. Next month, Carson will be two already and that means we are half way done with this journey. It feels so close and yet so far, but I know that things will continue to be great and with another baby here days will blur together and time will fly by quicker than it already is. Until then, I have to try to keep up with my toddler and anticipate the arrival of our baby girl.

 

 

 

 

Metatarsus Adductus

Our journey has been pretty smooth, not a single complication, not even a small blister. While I wish it would just continue that way for the next few years, I had a feeling something would eventually come up.

Recently, I’ve noticed that Carson’s  left foot is not as straight as his right. His toes seems to curl in more and when standing upright they tend to turn in. My worst fear was a relapse. I emailed the doctor photos, took him in, and luckily it is not a relapse, just metatarsus adductus. Apparently a very common thing with clubfoot kids. Its’ definition is, “a common foot deformity noted at birth that causes the front half of the foot, or forefoot, to turn inward.”

What does this mean for Carson? At the moment nothing. Most kids with metatarsus  will resolve on it’s own, but because he is a cf kid it’s not likely. Currently, his is very mild so nothing will be done to it. At the very most his left foot will just have this slight imperfection. However, if it does get worst and creates complications such as pain when walking or if he begins walking on the outside of his feet then there is a surgery that can be performed to help correct it.

It doesn’t bother me much, it’s hardly noticeable, and I doubt others would even give it a second look. I am hopeful that it will resolve on its own or it’s just something he’ll have to deal with. I think that toddlers tend to curl their toes anyways, whether to have a better grip or just out of habit, so maybe he will learn to relax his feet more. At times, his left foot does look straight, especially when he’s sleeping and completely relaxed.

Of course, I worry that this may be something he may be insecure about in the future, but we’ll just have to see how things work out.

For CF parents, don’t freak out, as long as their flexibility is great it’s probably not a relapse.

One.

In June, Carson turned one. We celebrated with a party at the park with family and friends. The kids ran around, the adults chatted and ate, and all around it was pretty successful. Carson had tons of fun opening his gifts, and while he loved the toys the most, I loved all the new shoes he received; From sandals to sneakers I couldn’t wait to put them all on him. For me, each pair of new shoes is a small reminder to me that Carson’s feet are corrected and ready to roam.

In June we also had our one year check-up with his orthopedist. During these visits, the doctor just examines his feet and flexibility of each one. He was impressed by how well Carson was walking and said his feet still look great.

In the last year, I’ve also noticed how his feet are a little different from others. Like how his feet have no arch and how the top of his feet seem to have extra fat. I’ve always understood that his feet would never be, “normal” but just recently we ran into some challenges. For example, we can only wear wide sneakers or sneakers where the tongue can be pulled almost completely forward. What’s ironic is that he doesn’t necessarily have wide or fat feet, they’re just so flat it’s difficult to slide them into shoes. On most days he’s wearing some crocs, shoes I thought I would never put my child in, but they seem to be the easiest and most comfortable.

As he’s gotten older, night time wear of the boots and bar has also become more of a challenge. Now I wait until he is asleep to put them on, but in the middle of the night he’ll wake up crying to have them removed. There have even been nights where he’s been able to pull some of the straps loose. I can confidently say that he’s not in pain, just uncomfortable. During his naps he sleeps freely and in any position so I feel as though he just knows the difference now and maybe doesn’t associate his bnb with sleeping. It’s a small battle every night, but we’re not giving up and still searching for the best method to keep him comfortable and asleep all night.

This month, (October) we go back for another checkup. This time around we hope that his degree on his bar will be reduced to 45 degrees instead of 70. In my mind, this will be a huge difference and create a more natural position for Carson.

Until then, here’s Carson transforming into a toddler right before our eyes!
   

    

   

Baby steps.

At 10 months, Carson is officially walking. I thought I would cry when this day came, but I didn’t. Everyday Carson amazes us with something new and this just happen to be walking.
It all happened within a week… First he started by walking around our coffee table, using it for balance; Then he got brave and started letting go and headed towards wherever he was facing. Luckily, he knew to brace himself and usually lands on his butt because he did fall a lot. In a few days we were outside watching him push his Mickey Mouse car, trying to run with it and take the corners. Today he can get up without using anything to pull himself up and I even let him walk on his own outside.

If you’re a clubfoot parent, seeing your baby walk will be a huge relief and milestone. It will make everything you’ve gone through worth it! Some walk early and others later, but don’t lose hope, because every baby is different.

 

The Perfect Pair.

“He has the most perfect, little feet,” those were words from a stranger a few weeks ago. It made me so happy inside, she couldn’t even tell he had clubfoot! She was right though, his feet are so perfect. His toes wiggle, his feet bear weight, and they stomp around as though he can walk already.

In February we had our check-up with his orthopedic and he said his feet look great. His flexibility and ankle dorsiflexion are perfect, both are a big deal for clubfoot kids. Any tightness or lack of flexibility can indicate a relapse or may require another surgery so we were relieved to hear the good news. We don’t go back for another 4 months, so until then we just continue bracing every night.

 

This was Carson celebrating after his doctors appointment.

Night time wear isn’t awful, but sometimes I wish I could just take them off and let him sleep comfortably. I always imagine how it would feel to sleep with a snowboard and I wonder how these clubfoot babies do it. Carson can sleep on his side with one leg held up in the air or on his back with his legs thrown all the way up, to the point where I’m afraid the bar might actually hit him. It doesn’t seem to bother him too much, which makes it easier for us to be strict about bracing 12 hours a day, but one night when Carson was sick I did take them off. It was the first time he had a cold and he had major congestion. He cried in pain most of that day and could barely get his milk down; The night was long already and I caved. I don’t know if that made me a good or bad parent, but I did it.

 

This month Carson turned 9 months and is proving to be one physically and mentally strong baby. He can crawl, pull himself to a standing position, and balance on his own for about 3 seconds. I know he will be walking in no time and when that day comes I’ll just sit here and weep; Partly because I’ll be overwhelmed with joy and relief that his clubfoot isn’t an issue and also because my house will need to be baby proofed. He’s also learned to scream, throw things like food or his body when he’s mad, so we can try to handle his dead weight. (Where do babies learn these things???)

He currently loves watching Mickey Mouse, Barney, and Elmo. He has 6 teeth now and chews on everything and anything. He prefers a house full of people, so that there’s always someone to entertain him, and wants to be outside every minute of the day. He has SO much personality and energy it’s amazing he’s only 9 months. We’ll have to see what he has in store for us next, because these day’s it’s Carson’s world and we are just along for the ride. 😛
        

  

 

For Clubfoot Parents

One of the great things about this whole experience is that we’ve met other families going through the same exact thing. It’s hard to say you know how we feel, but in this case they actually do.

At first, I had only met one other person who’s daughter was also diagnosed with clubfoot. We would email back and forth, talking about our emotions, our hopes and fears, and sharing pictures here and there. It was so comforting knowing there was someone else going through the same thing. (At that time I didn’t realize there were so many other families going through it too, I had no idea how to find them) Even now, with all the other friends we’ve made, I feel this strong bond with her and her family because it felt like we went through the entire process together…The anticipation and unknown, the happiness when our babies were born, the sadness and fear during the casting phase, and the excitement now in part-time wear. Even though we’ve never meet, I refer to them as our friends and pen pals overseas 🙂

If I recall correctly, she is the one who referred me to the FB pages and now it feels like we have hundreds of pen pals!  It’s truly social media at it’s finest and I’m so happy and thankful that it exists while we are going through this journey. If you are a clubfoot parent I highly encourage you to join these groups. They offer tips, advice, and support.

-Clubfoot Mommas

-Clubfoot Community of California

-Clubfoot Closet: You can sell or buy items that are clubfoot related, such as clothes or baby carriers.

-Clubfoot Shoe Exchange USA- You can donate your boots and bar or request some. It’s an awesome program that ensures the shoes keep circulating and help those in need.

What I appreciate most are all the stories parents have posted, the good and the bad. When I hear and see pictures of the good, it keeps me hopeful. I see older kids walking and running and hear about how successful their treatment has been; Their feet look so beautiful and normal and I imagine that will be Carson one day.

Others share their horrific experiences of botched treatments or relapses and my heart breaks for them. I imagine how it must feel to have to go through treatment all over again or having a delayed treatment because some doctor wasn’t experienced enough. I admit, because of these stories I find myself overly paranoid, which can be good and bad depending on the day. However you look at it, trust me, it’ll be comforting to know that other people are going through it too. Soon, you’ll discover and learn that there is a whole clubfoot community that you probably never knew existed.

There are also several moms who also blog about their clubfoot experience. They are all comforting and informative, I love reading them because everyones journey has been so different and yet so similar.

–http://www.writingmotherfashionista.com/

–http://lanamayes.com/blog/

–http://www.angelaerinwilliams.com/

–http://lovepeacebeauty.com/blog/

Below are items and tips that were a lifesaver for me:

-Baby leggings. It provided extra cushion on the top part of the cast, protection from pee and poop, and allowed us to stay fashionable.

-Baby walker and a bucket. See my previous post for details. This is by far our best idea yet and the one we get the most compliments on.

-Snap up one pieces. During full-time bnb wear we lived in these. They make diaper changes so easy!  We found most of ours at Target, Old Navy, Walmart, Carters, and Gap.

-Round cosmetic sponges. This was an idea posted on one of the Fb pages. It’s absolutely genius and saved my son from any redness or blisters. Just buy a pack, glue it on the tongue of the boots, and it provides cushion and relives some pressure from the middle strap. So easy and brilliant.

-Halo sleep sacks. They are big enough for casts and bnb.

-Boba baby wrap and Ergo carrier. I didn’t use the carrier until we were in bnb, but the boba wrap was amazing during casting and even now I still use it. It’s comfortable and is easy to adjust so the casts and bnb weren’t really an issue. The carrier works great, although some clubfoot parents feel the Ergo carrier is too wide for the bar, and prefer the Gemini.

-Circo bobby socks (Target) and Old Navy triple roll bobby socks. The Circo socks were great when his feet were smaller, the Old Navy ones run a little big, but the length is great so you can fold it over the rubber part of the boots; It helps prevent any rubbing and I think, provides some pressure from the socks. Both are really affordable.

-Baby powder. Their feet tend to smell, especially when they have them on for 23 hours, I would sprinkle some on every time I checked his feet.

-Baby Aquaphor. After casting, when his legs were extremely dry I would lather them up with some the baby aquaphor and then put socks over his legs. After a few days of doing this all the dryness went away.

-Receiving blanket (one you don’t really care for) or towel. Every time you get a new cast put on the plaster gets everywhere… On you, the baby, the carseat, anything their legs come in contact with; Keep a blanket handy to wipe it away.

– 4 Moms Mamaroo & Fisher Price Jumperoo. The mamaroo was very comforting to my son during the casting phase, he could sit in there for a long time; As he got older and became more active we transitioned to the jumperoo.

However your clubfoot journey may be going, or if yours is just starting out, don’t forget it will all be worth it in the end.

 

Feels like Christmas came early.

I can remember the day Carson was diagnosed with clubfoot like it was yesterday. I broke down the second after hearing it, cried all the way home, and the whole week afterwards. I wondered why it was my baby and why us? Would he be able to run or walk, would he be bullied, or feel different growing up? My whole idea of a “perfect” baby had been shattered. I was so mad at the world…

At that time, I went through a lot of highs and lows. Some days I was positive about the whole situation and thought to myself, “everything happens for a reason,” and “we’re lucky because we’ll be able to provide him a loving home and the best care.” Some days I would just have pity on myself.

I can recall going to a baby shower shortly afterwards and feeling envious because my baby wouldn’t be able to wear all the cute newborn socks, footed outfits, or pants. I often thought about what I may have done to cause it and what I could have done to prevent it. None of it made sense. By all accounts I was healthy, I didn’t smoke, I didn’t drink, I had even started taking prenatal yoga to stay active. During that time it was so hard to be hopeful and the thought of going through the treatment seemed like a nightmare.

Fast forward to 9 months later and we have the most perfect, healthy, happy, baby boy. When I look back to those dark days I want to slap myself for being so foolish. Every concern I had before, he has proven that he can overcome it. Every time we felt sadness or pain for him, he showed us how strong he is and his ability to adjust and persevere in any situation.

Last week we were approved to move to 12-hour wear and it felt like Christmas had come early! It seemed like the day would never come, but here we are. Looking back it seemed like such a horrible, scary experience, but some how we got through it.

As Carson and I drove home that day I found myself crying. My little 5 month old baby had been through so much in his short life and today he would get to experience 12 hours of freedom. Throughout the ride he was kicking his legs in his car seat and grabbing his toes, something he had never been able to do. It might not mean much to others, but seeing his precious, bare, straight feet brought me so much happiness. Today we can wear pants, take long baths, play with his toes, and watch him eat them too 🙂

A friend once said to me that his clubfoot experience would be so minor and wouldn’t even make the list of his top ten moments in his life and he was right. Everyday we are celebrating something new and his clubfoot seems like an after thought. Although, we still have to wear the brace for 12 hours, it’s just become part of our night time routine. (We usually do 9-9) In many ways this is just the end of the beginning as we have to continue to wear it for 4-5 years, but I am happy to say we made it through the hard part.

To Carson, you have given us and everyone around you so much more than you’ll ever know. You have showed us how strong we all can be and how we can also overcome any situation. Though we are the adults, you have been leading and teaching us. You are amazing. You are truly a blessing and now a days I ask myself how did I get so lucky to be your mom?

To other clubfoot parents just starting out… stay strong, keep calm, and brace on!

HAPPY FEET AND HAPPY BABY!

October.

October came and went so quickly, I couldn’t even find time to write a new post! It was such a fun month though, and Carson had all kinds of new adventures. Here’s a recap:

First, he turned 4 months and starting eating solids. Thanks to Ellen and Plum Organics, he received a whole bundle of baby food and is getting to try so many delicious flavors. (So far sweet pea is his favorite) He also stared rolling over, with and without his brace, and I swear he’ll be crawling any day now. Some people wonder if his clubfoot would slow him down, but I can tell you they’re not! Carson has some super strong legs and I am confident he’ll hit every milestone on time, if not sooner. Currently, his favorite toy is his jumper and he can almost sit up on his own.

  

  
This past month Carson had a lot of visitors and even some play dates. His best friend Madison came to visit and they went to the pumpkin patch to take some fall photos; Auntie Daisy and Paris also came to visit and helped us get into the holiday spirit. Cousin Parker and cutie Gwen also made time to hangout with Carson, we even caught them holding hands!

      
We also celebrated our first big holiday, Halloween! I guess you can say I was overly excited as he had 4 outfit changes throughout the day. 🙂 We really wanted to do a costume that embraced and incorporated his brace and we couldn’t be happier with the way it turned out.
   

  
Everyday his personality is shining through more and more. So far, he seems to be very silly, mellow, and happy. He doesn’t cry very much, but he does scream and whine. He loves being outdoors, eating his hands, and anything else he can get his hands on. He likes it when people sing to him and loves watching Barney. He also enjoys reading, so thank you to everyone who gifted him a book during his baby shower.
  
In regards to his clubfoot journey, it’s actually pretty boring right now, and we love boring. In my last post we had just started the 23/7 boots and bar wear, but in 15 days we go back to see if we are approved to go down to 12 hour wear. I’ve literally been counting the days since we started and I can’t believe it’s almost here. Carson’s feet look great, although I must admit I’m overly paranoid about a relapse. To the naked eye, they look normal, to me I examine every crease, curve, redness, etc. I’m hopeful that the doctor will agree that his progress is great though and we’ll be in 12 hour wear in no time. Crossing our fingers!!!
  

Lastly, Carson is in his first photo contest. If you have a minute, please vote. Click here to vote, you can vote once, everyday, until November 24th. (You may have to enter his entry ID:298476) Thank you in advance 🙂