Today is a pretty big day in our house. Today is officially one year after the first day my son received his first cast as treatment for his clubfoot. I have been hesitant about writing this post, because of all of the emotions that I have connected to this past year and to be honest, I will probably have tears streaming down my face while writing this. But ... I know that there are other mama's who are going through this too, and so this post today is for you.
The phrase that I keep coming back to, every single time I think about that first day, for mama's who are just now starting this journey, is this.
It will get better.
As I talked about in the first clubfoot post I wrote here on my blog, we didn't know our little guy had been born with a clubfoot before he was born. We found out the day he arrived into the world, and even then our pediatrician wasn't sure it was a true clubfoot due to the way he had been on the ultrasound. To make sure everything was okay, we made an appointment with a specialist, and went into that appointment pretty blind to the fact of what we would be heading home with. This photo below is of his foot (the one on top) when he was born - tucked carefully to conform into his little body, but what you can't tell from this photo is that it was unable to turn out or flat - it was permanently curved like that. When we held him up, the top of his foot touched the ground instead of the bottom. His foot was twisted, and unless we treated it, it wouldn't grow correctly and he would never be able to walk right. The doctor we worked with used the Ponseti Method, and although rigorous, was exactly what he needed.
That appointment, one year ago today, changed everything for us. We walked in having a cozy, snuggly little two month old baby, and walked out with one who had a cast on his leg from his hip all the way down to the tips of his toes, with an action plan for the next five years to correct his foot.
Five years of treatment...casts...surgery...and braces. That's what it was going to take for our son to walk one day. I remember hearing the doctor tell us about his treatment that we were going to follow and feeling like although I was hearing him, I wasn't really hearing him. I understood what he told us at our appointment, but then when we were at home, needing to do it on our own, it brought things to an entirely different level.
When our little guy was only two month old, he was placed into his first cast, with a new cast every week every Tuesday at 9:00. Every Tuesday for eight weeks, I brought my little guy to the hospital and held him close as he had one cast removed with a cast saw, he had twenty minutes or so of freedom for his leg to wiggle it around before a new cast was put on, his foot shaped into a new position while the plaster dried around it, and sent home to keep him comfortable. The first two days after the new cast were the worst, as his foot adjusted to its new placement. These eight weeks were so hard, but we adjusted. We weren't able to give regular baths so that we could keep the cast dry, so nightly sponge baths next to the kitchen sink were what became normal. We bought a Rock N Play sleeper because the weight from his cast in his crib made him incredibly uncomfortable, and the rock n play kept his foot propped up perfectly at a great angle. But the Solly Wrap that I had purchased before he was born waited patiently in its box, because I couldn't let his foot dangle, so all hopes of babywearing were no longer possible for this stage.
After eight casts, he had a tenotomy surgery to have his achilles heel clipped and positioned right so that his foot would straighten out, and then he was placed into one more cast. That night before surgery was one of the hardest for me ... my son also has many food allergies, and all I could think about was if he had a latex allergy or anesthesia allergy that we didn't know about, or if there was something in the hospital he would be allergic to that would cause a reaction of some sort, or heaven forbid if he was just plain hungry, since he had to go 12 hours before surgery without eating anything. Because explaining to a baby that they can't nurse (he was breastfed) just wouldn't work. However, after lots and lots of prayers, the surgery went well, was much quicker than we anticipated, and he had one final cast placed on his leg, to stay there for two weeks. I thought we were in the home stretch, but I didn't realize just how much more work we had ahead of us. Looking back now, the casting stage was much easier than the exercise stage, and if that's all this was, it would have been a breeze.
After his cast was removed, he was then placed into "boots and bars", which is basically a pair of hightop sandals that are attached to a metal bar. He had to be in these for three months for 24 hours at a time, with exercises (similar to these) for his foot five to six times per day, for ten minutes at a time (which worked out to be 23 hours on, one hour off). Hallelujah I worked from home so didn't have to train someone else to do this for him, but this also meant I had to get crazy rigorous with a schedule. I look back at my planner now and wonder how I did it all. My nursing days had turned to pumping and bottle-fed days because he never latched well, but formula wasn't an option due to his food allergies. He has so many allergies (including dairy, corn, nuts, many fruits, and a few others) and so nothing we tried worked, and caused outbreaks soon after trying every time, so I just committed to a daily routine that looking back now, was the busiest I've ever been.
Our Typical Daily Routine:
5:30 - Pump and hope Aiden doesn't wake up yet. If so, my husband would get him and keep him happy until I was done pumping.
6:30 - Feed Aiden.
7:00 - Take boots off and do therapy for 10 minutes. (my 3 year old Adelynne would wake up at this time, and wander into our room to sit with me while finishing his exercises)
7:15 - Put boots back on.
7:25 - eat breakfast, take a shower.
8:30 - Pump, rotate mornings - day one, answer emails from my phone while rocking Aiden next to me and Adelynne reads, day two, play with Adelynne with Aiden laying next to us (while pumping, mind you ... that was a sight to see I'm sure!).
9:15 - feed Aiden.
9:45 - take boots off and do therapy.
11:30 - Pump (still while working).
12:00 - Aiden and Adelynne would usually awake around this time. Get him up and hold him while making lunch for Adelynne, while she's eating, feed Aiden.
12:45 - Take boots off and do therapy.....
........and so on and so forth. Just looking at this schedule now makes me absolutely exhausted all over again. I purchased a large Day Designer (the Blue Sky Collaboration version from Target) and I don't know how in the world I would have survived without it. I split the hourly section into four columns, and had one section for pumping, one for therapy, one for eating (Aiden), and one for his sleeping schedule. The To Do section was where I listed everything I had to do for my work that day, and the notes section was where I put all of my mama stuff - from laundry to calling doctors to keeping track of what I ate, so that I could make sure if he had an allergic reaction, I could tell the allergist what I had.
How I survived that four months of therapy and was still able to hold a conversation and run a business where I think my brides pretty much had no idea what I had going on behind the scenes since I tried so hard for them to feel loved and not see how busy I was with mama-life when I wasn't in front of them, I have no earthly idea. I know now that God was definitely holding me incredibly closely during that time, guiding me every step of the way. I prayed feverishly, I made a playlist from the She Reads Truth app, and Aiden's favorite song during therapy then (and still now) was this version of Amazing Grace. Listening to that song every day was even my saving grace when I thought I couldn't handle it anymore.
The day six months later that he had his appointment and we were told he only had to wear his boots at naptime and nighttime was one of the happiest of our life. (insert crying blogging mama right here, right now) This meant that our son could learn (literally) to stand on his own two feet. I no longer had to cling to a schedule that included therapy, and that extra time in the day seemed like a crazy life-changing difference. I can't even explain it - the first days with him without his brace on for 24 hours at a time were surreal. I remember him curling up into my arms and not feeling the plaster from his cast days or the metal bar from his braces, and absolutely loving it. There are no words to accurately describe it.
He wears his boots and braces during naptime and nighttime still, and will do so until he is five. But, his braces have become one of his comforts. He points at them when he knows its naptime, he calms down and gets ready for sleep the instant they touch his feet, and it's almost like Pavlov's Law - when the boots go on, he knows it's time to go to sleep. He can't sleep without them on now. We purchased some tubing from Lowes and wrapped it around the bar, and use little baby leg warmers around it to give him some cushioning ... and some fashion too. Ha! This little addition is highly, highly recommended mamas! Keep your hips protected from that metal bar!
Now, a year later, his feet are beautiful. And every single tear, every tantrum, every hard decision and seeing him in pain was all for the best. You can't tell which one of his feet was the clubfoot unless you look at his heel and see the tiny 1/2 inch long scar, which will eventually go away due to growing. He is one of the sweetest and happiest boys and I am so, so grateful to the amazing doctors we have here that were able to give my son the ability to walk.
Yes, walk. Last week, just two months after his first birthday, one week before his year "anniversary" of his first cast, my son took his first steps. And they are beautiful. Amazing. Incredible. His face is probably like any other little babys face, filled with excitement and wonder and "ooh look at me mama!", but to this mama, every single step he takes is filled with gratitude for his doctors. A sigh of relief that all of the hard work, all of the doctors appointments, all of the frustration of him not being able to do "normal baby things" like take a bath or snuggle in my arms without something hard between us was worth it. My son can walk, and that is amazing. In this photo below ... if I didn't tell you which foot it was, would you even be able to tell? Because I wouldn't.
Looking back at this last year, I don't know how we did it. The only way I know we did was with a LOT of praying, a lot of patience, giving myself a lot of grace, and simply hoping for the best. It became a way of life for us, a routine I got used to, and something that we just needed to do because my son needed it. I am amazed at the doctor's knowledge that we worked with, and am so grateful that the nurses took every call I had with questions, never made me feel silly or like I was a nuisance, and in the end, my son can walk. And he honestly will not remember this other than with photos that I share with him when he's much, much older. And that is all that matters.
Mama, if you are going through this clubfoot journey, please please know that you are not alone. There are other moms in the same position as you, who are trying to figure this all out on their own and wanting people to turn to for help. I joined an amazing Facebook group that I found when he was first diagnosed, and the women there are incredible. Please contact me if you ever need someone to talk to or to simply cry to and feel encouraged that you can do it. God gave you this particular baby for a reason, and He knows that you can be the mama your baby needs you to be. I know it's hard. It's going to be tough. But you can do it. And then, a year later, looking back, it will all have been worth it.
A tremendous thank you to Jordan with Jordan Burch Photography, Megan with Southern Grace Photography, and Anna with Anna Filly Photography for capturing these moments in our lives that I will always, always treasure. You each have amazing gifts, and for you sharing those, I am eternally grateful.