A Long Overdue Update

Yes, it's been a while! 

Today is the one year anniversary of the day he got his first casts.

Then....

Now:

He turned one year old on October 7 and we had a fun party for him the previous Saturday.

We're in maintenance mode right now. We put on the boots at night, right before bedtime, and take them off again in the morning. Same old, same old. :)

Since he got his new boots back in May, we've had some issues with pressure sores, so we finally got some pressure saddles from the orthotics shop (see the white things shaped like a Pringle under his middle strap on the left boot) and those seem to be helping.

I read this post about the "Bloody Boots and Bar" and thought it was spot on. The BNB can be annoying at times (especially when the poor kiddo has things like pressure sores happening) but we're so thankful that the treatment is, all things considered, relatively easy and non-invasive. 

It's World Clubfoot Day!

An anniversary passed a few weeks ago that I didn't realize at the time. May 17 was the one year anniversary of the day Peter's bilateral clubfoot was detected via ultrasound. If I could have known then what I know now, I would not have cried myself to sleep that night.

The first few months were the hardest, but we have come such a long way in such a short time. Today, Peter is almost 8 months old. He wears the boots & bar for 12 hours at night, and that's it. No one even knows he has clubfoot unless I tell them.

To any mom whose child has been newly diagnosed with clubfoot and who might be reading this, I want to tell you something: it's going to be okay.  It really is. The casting will be tough, the tenotomy surgery is scary as hell, and adjusting to the boots and bar will take some work, but it's going to go by so fast you won't even realize it. You'll blink, and all of a sudden your baby will only be wearing the boots and bar at night and it will just be another part of a typical bedtime routine. And there might be relapses, maybe even other surgeries down the road, but you will get through it because you are strong, and so is your child.

Ponseti International Association (PIA) designated June 3rd as World Clubfoot Day. The date was chosen to commemorate the birthdate of Dr. Ignacio Ponseti, (1914-2009) the developer of the Ponseti Method to treat clubfoot. The goal of World Clubfoot Day is to raise awareness about clubfoot disability and its prevention using the Ponseti Method, a non-surgical treatment that includes gentle manipulation of the feet followed by the application of plaster casts and temporary bracing.

Check-up Day!

Peter had a check up at the orthopedist's office today. We saw his new doctor, Dr. Belthur. The doctor said his feet look great!

We also got a prescription for new Mitchell shoes, because he has just about outgrown his old ones. His bar needs to be lengthened, too. 

In non-clubfoot news, he is sitting up by himself and he has two teeth (both on bottom). Not quite crawling yet, but he is rolling around all over the place. 

He is a growing boy! So proud of my little man.

Boots and Bar Bling!

Peter has some new boots and bar bling! I ordered a bar bumper (basically, a cover for the bar portion of his brace) from Taz at Bar Bumpers and it came today.

Peter was so excited!

Here's a close-up of the cover:

I wish I'd ordered it earlier -- say, in December when he first got his bar -- but better late than never. It's so cute and we both love it. Hopefully it'll help protect Mommy's tummy from getting whacked when we nurse without his sleep sack on. :) 

Boots and Bar Update - Nighttime Wear Only!

We've successfully transitioned to only nighttime wear of the boots and bar as of March 12! Per the advice of Dr. Segal, we went straight to 12-hour nights, with 12 hours free during the day, and Peter has adjusted extremely well. He loves playing with his feet and it's so fun to watch him!

To make things easier, we put the brace on around 7:00pm, and my husband takes it off right before they leave the house for daycare at 7:00am -- that way our daycare providers don't have to worry about it and we can just leave the brace at home. On weekends, I take it off whenever we get up in the morning, usually between 7am-8am.

Taken on St. Patrick's Day, March 17.
He's not wearing the boots & bar in this pic but is still holding his feet in the brace position.
Force of habit, no doubt!

Our next check-up is May 22, but sadly it won't be with Dr. Segal. :( A few days ago, I was told by another clubfoot mama from PCH that Dr. Segal is moving to Wisconsin. Thankfully, there is another Ponseti-certified doctor at PCH (otherwise we'd have to drive to Tucson), and I've met him before -- he did Peter's second casting -- but the news still made me sad. Dr. Segal was so wonderful throughout the entire process and it's sad to think he won't be able to see Peter's progress as he grows. Maybe I'll send him the link to this blog. :)

2007 CMN Miracle Awards: Dr. Ignacio Ponseti

How cool is this? LeVar Burton (a.k.a. Geordi LaForge in Star Trek: The Next Generation) and Dr. Ponseti in the same video! As a huge Star Trek fan, I'm geeking out.


I wish I could have had the opportunity to meet Dr. Ponseti in person. What an amazing man. I'm so grateful for what he's done for Peter, and all the children with clubfoot.

Boots and Bar Update

We had a follow-up visit at Phoenix Children's Hospital this morning - Peter's first since getting the brace in December. (As I mentioned previously, it was supposed to be last month but we had to reschedule due to insurance issues.)

There was something going on in the examination rooms, not sure what, so Dr. Segal actually came out into the waiting room to look at Peter's feet! His assistant jokingly called it curbside service.

After we took off the boots and bar, he examined Peter's feet and pronounced them perfect. Best of all, he said we could start part-time brace wear as of March 12! That means Peter only needs to wear the brace for naps and nighttime, or 12 hours at night, whichever is easiest for our schedule (I think we'll have him in the brace from 6pm to 6am so that our daycare doesn't have to deal with putting the brace on or taking it off.)

Peter goes back for another check-up on May 22.

He also had his 4-month well baby check today. Unfortunately their scale was broken so I'm not sure what he weighs (I'm going to weigh him myself later tonight), but otherwise the visit was a success. He was flirting and cooing with the nurse and doctor the entire time, and barely cried at all during his vaccinations.

So excited to start part-time wear!

Excellent Article, and an Update

Excellent article about clubfoot treatment on NPR today!

The casting technique was developed by Dr. Ignacio Ponseti at the University of Iowa in the 1950s. The Spanish physician discovered that if an infant's feet were slowly turned out over the first few months of life, the foot could be coaxed into a normal position.

Unlike the traditional surgical method, the Ponseti method is pretty much painless, and patients who receive it usually have a complete recovery, with no long-term discomfort. It also costs less. Ponseti spent the next 50 years tirelessly trying to get other doctors to accept it, but with little success.

Read or listen to the story here.

The blog has been quiet because I don't have too much to report. No news is good news, right? :) The brace is just part of our routine now. It has gotten easier to buckle it. At first I was afraid I'd never get the hang of it, but it gets easier each time. I can get it buckled pretty fast now.

I usually take it off an hour before bedtime, and make it our bedtime routine put the boots back on, swaddle him (with the upper part of the swaddle blanket only), put him in the sleep sack, and nurse him to sleep. The brace doesn't seem to bother him at all.

One evening, during his free hour, he was rather fussy. Once I put the brace back on, he calmed down and seemed happier. That makes me a little apprehensive for when we go down to only nighttime wear, but I'm sure he'll adjust to that when the time comes.

We haven't had our one-month bracing follow-up visit yet. My husband unexpectedly switched jobs in mid-January, and his insurance coverage ended effective his last day of work. His new coverage doesn't start for a few more months, so we've switched to my work insurance, but that isn't effective until February 1. We had to reschedule his visit for February 20th.

The Beco Gemini is working very well for babywearing with the brace. We went on a two-mile hike this weekend and Peter seemed to enjoy it!