I know it has been quite some time since I’ve updated about Penelope’s clubfoot treatment. It seemed every time I thought I may have something to say, it was simultaneously a waiting game until the next checkup or milestone. Unfortunately, that is kind of the way it will feel until this is over, so no better time than now for a recap.
Last we left off, our beautiful Penny had been put into her Boots and Bar (BNB) braces. She started with 23-hour wear, as is Ponseti protocol. Yes, that means 23 out of 24 hours in a day with the braces on. It was rough. We weren’t always incredibly diligent. One hour never felt like enough, and truth be told if she fell asleep, which she often did, we felt bad waking her to put them on.
Luckily After about 3 months, she was granted a promotion to 16hr wear. That gave us 8 full hours out of the braces. It was glorious! We no longer had to struggle with how to spend that single hour. Do I just hold her into a small squished up ball, nurse her to sleep, bathe her, let her crawl? We generally tried to put them on her around bedtime, which was usually 11pm. We’d keep them on her until 3pm which worked because that would let her out for all of our late afternoon/evening errands.
Again, we weren’t always the most diligent. There were occasionally things going on that I’d tell myself it would be so much easier if she didn’t have to wear them.
While babywearing is possible, it's clearly easier without. A lot of those times, I tried to keep her boots on and just remove the bar for a while. While I’d always feel a little guilty, I’d give myself a pass, because SHE was happier without.
Eventually, the inevitable happened, and I started noticing her heels weren’t dropping as much as they had been. Her dorsiflexion was tighter, and I even noticed a slight curve reappearing. My husband told me it was in my head, but I just had a terrible gut feeling. In the last month or so leading to her next checkup, it got even harder to put her boots on, likely because she was already relapsing.
|Noticing a curve|
So the day came for us to make the 3 hours drive back to Dr. Zionts'. When he walked in and asked us how everything was going, I told him my concerns right away. Honestly, I was hoping he would make me feel better, and set my mind at ease. Unfortunately, he validated my concerns and could easily see the curve as well. He confirmed that she had, in fact, relapsed.
We agreed on a plan to go back into a series of casts. Due to an upcoming family vacation, the schedule was a little strange. The cast she got that day would go on for two weeks. He assumed she would need between 2 and 3 casts. The second would go on for one week, and if a 3rd was needed it would last two weeks.
I was very discouraged. I felt entirely to blame and wondered if this could have been avoided.
Luckily, our precious baby girl, didn’t seem too discouraged by this setback. She didn’t appear to be in pain, or uncomfortable. Around bedtime she was a little more fussy than normal, I believe because she wanted to curl her legs up. After a few days, was easily crawling around. I felt really bad she couldn’t pull herself up on her toys like she was used to, but I think it bothered me more than it did her.
Two weeks later, her feet looked so much better already! I was actually surprised when her doctor still wanted to do another cast. This one would only be on one week.
I was crossing my fingers, toes, and everything in between it would be the last one. We were due for a vacation that would have her meeting a large number of my family members for the first time.
Although I knew they wouldn’t treat her differently, I wanted them to really enjoy her, holding her, watching her get around, etc. So, I was beyond ecstatic when after 3 weeks, and 2 casts, she was given the green light to return to 16 hr braces.
When the second set of casts came off, her legs were very sensitive to the touch, and weak. She wouldn’t bear any weight at all. I knew it would come back in time, but it was heartbreaking to watch.
As a small celebration we decided to take the kids to the beach. We loved the beach in Santa Monica and were very excited to share that with Penny and let her sit in the sand for the first time.
Since then, we’ve been much more diligent with her brace, though I’m not going to lie and say we’ve become perfect. We do understand how important it is for her future and how we are completely responsible for her little body and giving her the best chance at a normal life.
She is back to pulling herself up on things and bearing weight just fine on her legs. There doesn’t appear to be any indication of standing on her own or walking anytime soon, and that’s okay.
Her one year birthday was yesterday (already!), and we are asked all the time if she’s walking yet. It hurts a little, and I know I can’t compare her to a child not dealing with the same issues, but sometimes its hard not to. But she will hit her milestones in her own time.
We’ve had one check up since, and unfortunately her dorsiflexion was a little tighter than it was at her last visit. When she first came out of the last cast, she was at 30 degrees, and 2 weeks ago it was at 20 degrees.
Her doctor isn’t calling it a relapse just yet, so just another waiting game. On top of making sure she is wearing the brace everyday, we also have to stretch her tendons while her feet are out of the Boots n' Bars. She absolutely hates that, but it’s a necessary evil that we are taking seriously from here on out.
I am very worried about how to navigate this next leg of her journey. Her last appointment with her current Ortho is just one week before we move. Her doctor has been seeing her since she was 4 weeks old and knows her case well. Furthermore, if he DOES decide it has become another relapse, there won't be anything we can do for nearly 2 months after that. We will be leaving a week later, on the road and visiting family before we head to our next duty station in Germany. Navigating her new healthcare provider in Germany will be a full story in itself, and I don't yet know how it will turn out.
So needless to say, this has been a roller coaster. We are trying our best and its been rough, but for her we’d do anything.