Tuesday, September 13, 2016

Good news!

Peter had a check up about a month ago -- overall he's doing well. One of his feet is a little stiffer than the other, so we're going to keep doing stretches at home and re-evaluate in six months.

In other exciting news -- Peter has a new little brother or sister due in January, and we found out last week that s/he does not have clubfoot! We only had a 4% chance of a sibling re-occurance, but I was still worried going in. However, his/her little feet look perfect, as does the rest of him/her. :)

Friday, August 21, 2015

Peter's finally walking!

I just realized I never updated this blog with our sad news from June. Unfortunately, we lost Peter's baby brother or sister to miscarriage on June 1.

We are healing, slowly but surely.

In happier news, I'm excited to report that Peter is finally walking!

Several months ago I contacted AZ Early Intervention because I was worried that Peter was 18 months old and still not walking. It took a while, but we finally got him set up with some physical therapy sessions. After only two sessions, something clicked with him and he started walking like he'd been doing it for months. I took this video the other day and I'm so proud of the progress he's made. Take that, clubfoot!

He's going to have one more session at the end of this month just to tie things up and at that point they'll likely be discontinued. So proud of my sweet boy!

Friday, April 24, 2015

Exciting News!

Peter is a big brother! We are expecting our sixth child on December 12, 2015.

It's been kind of a rough pregnancy so far, as I won't take Zofran this time around, but I think I've mostly got a handle on the nausea now. (More details about that here.)

We'll have our anatomy scan in late July if all goes well (I've had two past miscarriages so I never assume anything). We only have a 4% chance of having another baby with clubfoot, and if the Zofran was indeed the culprit our chances of having another clubfoot baby are pretty slim. Regardless, we'll love him/her unconditionally.

Peter had a follow-up at Phoenix Children's yesterday. The orthopedist was a bit concerned because his feet still have a tendency to turn in slightly. But he may outgrow it as he starts walking more, so we'll take a wait and see approach. He still isn't walking on his own -- he cruises along furniture and stands independently, but hasn't quite made the leap to walking unassisted yet. We also picked up his fourth pair of boots!

He loved the wall toys at the pediatric orthotics office.

Friday, January 23, 2015

Zofran and Clubfoot

First, a brief update - Peter is 15 months old now, and he is doing great. His last appointment was mid-December, and his orthopedist said his feet look good. He got his third pair of new boots on Wednesday (he's now in a size 3). Putting them on is a bit more difficult because he's much more mobile - he thinks it's hilarious to try and throw himself off of the bed or changing table as I'm trying to strap on his boots.

He isn't walking yet, but he crawls all over the place (even with the BnB on!) and tries to pull himself up (usually when the dishwasher is open so he can try and throw dishes across the room). I tend to have late walkers (my oldest son didn't walk until he was 18 months) so I'm not worried. 

Now, on to the reason I'm emerging from my (unintentional) hiatus.

In one of the clubfoot support groups I'm in on Facebook, someone posted a link to info about a class action lawsuit related to women who took Zofran during pregnancy and then had a child with a birth defect. I'd read about Zofran potentially causing cleft palate and heart abnormalities a few months ago, but I had no idea that clubfoot was also a defect that Zofran may allegedly cause. (The link has not been proven, it is just suspected at this point.)

I did take Zofran regularly in the first trimester while I was pregnant with Peter (I also took it regularly during my pregnancy of his older brother, Gabriel, who does not have clubfoot). So, I filled out the form and submitted it. I received a call literally two minutes later from a lawyer, had a 30-minute phone conversation, and ended up signing paperwork to participate in a class action lawsuit, should one be filed.

I have the option to drop out at any time if I feel the need to do so. It's a contingency case, meaning the lawyers will only get paid if the lawsuit prevails and there is some kind of monetary reward (in that event, they get 40% and I get 60% of whatever the individual reward is).

But I didn't sign up to participate because of the money - if there is a link between Zofran and clubfoot (or other defects), I want it publicized, and I want the company held accountable for making sure that other moms know the risk. Women need to be able to make an informed choice about taking it during pregnancy. I wish I had known. Now, because of the suspected link, I will not take it during any future pregnancies, despite the crippling nausea I always experience. I don't know if it caused Peter's clubfoot, but I'd rather not take the risk if there is one, just in case it was the cause.

Anyway, if you are a clubfoot mom and you took Zofran in the first trimester, as I did, you may want to find out more information about the lawsuit. You can fill out a questionnaire here, and the law firm will call you if they think you are eligible to participate.

Bear in mind that if you are chosen to participate, and they end up filing a case, you will be involved in litigation. They will likely comb through your medical records from your pregnancy and try to find out if you did anything else that could have caused clubfoot. Affidavits, depositions, and maybe even court testimony may be required. But again, read the contract carefully before you sign (if given the opportunity) so you know exactly what you are getting into.

Friday, October 10, 2014

A Long Overdue Update

Yes, it's been a while! 

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



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. 

Monday, June 2, 2014

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 ultrasoundIf 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.