Wednesday, March 22, 2017
Penelope's Clubfoot Update: Navigating the Challenge While Overseas
I'm way overdue on an update for my daughter Penelope's clubfoot progress. For a bit of recall, she was born with bilateral clubfoot, or talipes equinovarus.
The last I left off, was when she had a relapse around 10 months old. She was recasted for two sets, and looked great after!
We moved to Germany in november of 2015 and although we are American military and there is a clinic on post, all specialties are off post in the economy (in other words - German doctors). We spent many months jumping through hoops to make the appointment we needed.
We are on EFMP (the Exceptional Family Member Program) and had already locked down our specialist before we'd arrived. However, communication was a bit hit and miss, and it took us quite some time to see him.
We finally did about 4-5 months after moving here. It was a good visit but they did say her dorsiflection was stiffer than they like. Dorsiflection is the range of motion and ability for toes to bend toward the ankle.
Then, around 18 months, in an accidental fall, she broke her left leg - a crack right on her femur right above her knee. This resulted in a 10 days cast and further delay in her physical milestones (such as walking). Not to mention, it wasn't a 'clubfoot cast' so she was unable to wear her brace for that period of time. I truly think this is where we began to go downhill again.
She finally started walking at 21 months.
A few months after her leg had been casted, we saw her specialist again. At our second appointment, he commented that if her dorsiflection got any worse he may suggest casts, like she'd worn when she was younger.
Unfortunately, it was another 6 months until we could see him again! (Our doctor in the States had had much more frequent check ups.)
In the meantime, our pediatrician recommended in-home physical therapy. The therapist came to our home twice and recommended AFO, which are full time shoe inserts meant to mimic the effects of her brace.
I hated the idea of making her wear shoes/boots 24/7, but attempted ot do as recommended.
Once we had the AFO in hand, we spent a lot of money and energy buying her shoes after shoes to fit them properly, and never fully succeeded.
Unfortunately, the visiting physical therapist became very flaky. We never achieved a good working relationship, or any consistency in communication, and eventually she became too difficult to work with.
Finally, February rolled around and it was time to see our specialist, Dr. Wurth again. I always dread these checkups, especially when they are spaced so far apart, but I didn't really expect the news we got.
Penny spent hours in the waiting room (yes, hours), singing Doc Mcstuffins songs about feeling better after the doctor.
She babbled about letting the doctor see her feet and being a brave girl.
But as soon as we went in his office, all bets were off.
She screamed, refused to get down and show him how she walked, and was very uncooperative. Her natural resting position was mostly all they had to go on, as well as unimproved range of motion.
They really wanted to see if her toes curve in when she walks but they were unable to assess that. In the end, we were informed she would be recasted that same day.
I'm not so sure Penny remembers any of her previous casts and really acted like she was in a torture chamber. It was just awful to have to witness!
She spent the first 3 days or so sadly asking us if she could get down and run, and we'd have to tell her she couldn't. She spend most of the first week on the couch, watching TV.
We were also very fortunate to have a fantastic community and managed to borrow a few things for her that made our lives easier. Both from virtual strangers, we got her a papasan chair, that comfortably rested her casts, as well as a open seat high chair as hers had hard frame leg holes that were were difficult with her bend leg casts.
We reiterated to her over and over that at the end of the week these casts would come off BUT another set were then going on. The way she repeated it, I don't think she quite understood that second part, which made the next appointment just as sad and difficult.
One thing that made removing the first set challenging is that we never had plaster casts before! All her previous sets were soft roll they would just unravel.
We opted out of using the saw, as it scared me.
So, they set us up with a bucket of water and a huge roll of paper towels. We had to soak each towel and wrap them around her casts. I felt so badly about it as it was pretty cold in there. After about 40 minutes, they came back and told us to start over, and do it again. UGH!
Finally her cast of soft enough to cut off using these industrial scissor things. They had to shove the shaft of the scissors down the leg of her cast, and tug pretty roughly and she complained of pain the entire time. She kept saying he was going to cut her foot off and that she was 'afraid to see my leg!' it was heartbreaking.
Once she had the new set of casts on, she was ok. She was just happy they weren't touching her anymore. When we got home she was in much better spirits week two. She often got down on the floor to play with her big sister and kept saying she couldn't wait until she could run around in circles again.
When the day of the second cast removal finally came, we were all so excited! This time we opted for the saw, which was much faster, but incredibly loud. She still cried and was scared but didn't complain of any pain this time.
What we forgot to anticipate was how sore her legs would be, having been locked in the same position for two weeks. Once we got her home we figured it might be a day or two before she would be back to her old self. She could only move around in very small steps and only holding hands or furniture.
Now we are almost 2 weeks out, and she is finally running around just as before. Hopefully we can get back into the swing of potty training, which was interrupted by this relapse!
She continues to wear her brace every night, for about 12hrs a day.
At just 29 months of age she has endured 25 casts total, 2 surgeries and hundreds of hours in an awkward brace. Even she will happily tell you she is a 'Warrior Princess"
Here's to hoping that was our last bump in the road along this journey!