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 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.
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.