The past 15 months have brought significant highs and lows for our family. I plan on revisiting those months at a later date, but now want to focus on today and on the future.
JP and I have discussed starting a blog about Knox for awhile, but have both had some mixed feelings. On one hand, finding and reading the blogs of other PFFD parents has been tremendously helpful for us. Additionally, it’s challenging to keep all of our friends and family updated on Knox’s diagnosis, development and treatment plans, and we know a website will help with that. On the other hand, we’re both somewhat private people and don’t quite feel comfortable sharing our personal lives — and Knox’s — with the world. In the end, we decided that keeping our loved ones in the loop and offering our experience as a resource to other families is too important to forgo.
So, here we go:
Knox is just shy of 10 months, and for much of his young life, his PFFD has not been a major issue. Although he has only a trace of a femur, which causes his right foot to be about level with his left knee, he has thus far been very much just like other babies. Knox’s only health problem is with the bones in one leg; otherwise, he is a healthy baby in every way.
When Knox started crawling before 7 months, JP and I were proud. When he started pulling himself to stand (on one leg, natch) before 9 months, we booked an appointment to get him a prosthesis. When that was delayed due to a horrendous case of chicken pox, we were disappointed (please, please vaccinate).
In the month or so that we’ve been waiting to get his prosthetic leg, Knox has mastered pulling himself up on furniture to stand very steadily on one leg. He is especially adept at pulling up on things to grab cell phones, beards, eyeglasses, cocktails and pretty much anything else in the room that is not a toy, even though 99% of every room in our house is, in fact, toys. Our little guy crawls as fast and as far as any other babe his age, climbs up and down stairs and basically defies gravity when he spots a Cheerio, which end up in the oddest places.
For awhile now, he has been ready to move on and has grown increasingly frustrated with his inability to practice taking steps.
His grandpa noted weeks ago, “If they don’t hurry up and get him a leg, he’s going to figure out how to make one himself.”
I love that because, while an exaggeration, it is 100% true to Knox’s nature.
When the day finally came today to go get the prosthesis, I was so excited but nervous, too. I was afraid Knox would hate it because it would hinder his movement and feel awkward. He seems happiest in just a diaper and fights coats, hats, jammies, carseats, high chairs and anything else that constrains him in any way. We also recently learned from an MRI that both his ankle and hip on the right side are unstable, and I worried he might not be able to bear much weight on his little leg.
It was not odd for me to be worried, but JP had some uncharacteristic trepidation, too. Knox had been fitted for the prosthesis a few weeks ago, but because it was a custom creation, JP was concerned it wouldn’t fit right, or that Knox might pitch a fit when they strapped it on. The appointment was at 3pm, and we stressed to his daycare that it was important he nap well so he would be in a good mood during the hours-long fitting. Of course, he napped for all of 30 minutes, little stinker.
Regardless of his lack of sleep, at the appointment Knox blew us away with his attitude, his determination and his adaptability, just like he does every day. He smiled and bounced during the fitting while they took measurements and adjusted the straps. There were three prosthetists in the room, and, maybe I’m biased, but I’m pretty sure they all thought he was amazing.
Very coincidentally, my dad was buddies in high school with our prosthetist’s father in the 1960s in a city on the other side of the country. I mention this because building this type of prosthesis for such a small child is a very unique, custom job, and it’s super random that the guy my dad insisted we see way back when I was pregnant is the same guy we were eventually referred to by our surgeon.
Anyway, after all our hand-wringing, both Knox and his prosthetists knocked it out of the park. Knox immediately pulled himself to stand on his new leg — something we worried might take weeks or months. It took him a few tries and a little fussing to get from sitting to crawling, but then he just took off as quickly as usual. Later at home, his dad crawled behind him supporting the prosthesis so it didn’t scratch our floor. Priorities, people.
I did not expect to be so enamored with his leg. It is strange for me to think that I see my son’s prosthetic leg on the kitchen table and beam with happiness. A year ago, I would have cried at the image. But after everything we stressed about, that leg is all Knox needs. He’s a healthy, smart, happy little boy. Who cares if he uses a prosthesis?
His leg has a camo pattern per JP’s request and the most adorable little foot. Most importantly, of course, it seems like it will work great for Knox. We’re still a long way from independent walking — and he’s only 10 months — but we have a lot of people helping him reach that goal every day, including our team at Children’s Hospital, the amazing folks at our daycare, and our friends and family, who could not adore Knox more. (Seriously, you guys, STOP waking the baby. It is not play time.)
For those who are wondering, Knox has not had any surgery yet, but he will need to in the future. At the present moment, we are thinking that won’t be for at least a year. For the time being, Knox will get around either au naturel or with a prosthesis. We have a recommended plan from our surgeon, but we are getting a second opinion next week and likely a third after that before we decide. I will talk about those plans in a later post.
Until then, we are so excited to watch our little peanut keep learning, growing and getting into mischief!