The Littlest Feet

Operation Footprint documentary

2007-02-02T15:21:00.000-08:00

2006-04-14T06:07:00.000-07:00

I woke up this morning to read that Iowa City had been hit by a tornado last night.
Sad news for those who love this little city.
http://www.press-citizen.com/apps/pbcs.dll/frontpage
As I was taking Anna to ballet yesterday we passed the Red Cross, and the thought occured to me that I should sign up to volunteer. Brad and I had started the process years ago before the kids were born, but got distracted. Maybe now is a good time to try it again.
Support your local Red Cross!
http://www.redcross.org/

Success

2006-04-13T18:19:00.000-07:00

I haven't updated in awhile. It's been over a month since our last post and enough time has passed to say officially that we have achieved success with shoe compliance.
Ian wears them every night (minus an occasional night when he might be sick, etc...) and is tolerating them better as the weeks go on. He's not waking up so often (for awhle it was like having a newborn again). He still wakes up with red areas, but they fade every day and are not progressing to open sores.
He can hop up and down in them while balancing, and amazingly, he learned to walk in them a few days ago without holding onto anything. You'd have to see it to believe it.
One of these days we'll put pics up from the trip and other recent ones.
Little man also has pneumonia right now...once again we caught it early so it was only in his lower left lung.
He has a tendency to surprise us with stuff like this. :)

I've thought about whether or not to make this blog into a general one, instead of just clubfeet, because there's lots more to write than just this stuff. But for the sake of other families actually looking for information, we'll keep this one as is. Perhaps we'll start another in the near future.

Doing better

2006-03-07T23:42:00.000-08:00

Tonight we put thick socks on Ian, wrapped his feet in a piece of fleece, and attached strips of padded moleskin to the inside of various places of the shoes. We put them on at dinner and then went out to our favorite bookstore to distract him and wear the kids out before bed. Ian did awesome getting around in the shoes! He can balance alone, crawl up steps, walk with one hand held, and is close to walking with no support! It's funny to watch...he looks like those little green toy soldiers in the Toy Story movie. He's pretty good at maneuvering around objects too.

Later, as we came home and put him to bed, he complained about his shoes being on. I knew tonight he wasn't hurting, he just didn't want them on. So I tucked him in and told him a story about his feet and his special shoes. He smiled and closed his eyes and seemed to accept it.
He's not woken up since.
HURRAY!!

Not a good night

2006-03-06T20:21:00.000-08:00

The Mitchell shoes came 3 days ago in the mail. We were impressed with some of the new changes, like the wider straps and the higher piece of rubber going up the back of the heel.
The first night, Ian let us put them on with no problem and only woke up once during the night. In the morning, we saw 2 red areas on his big toes and the area of the foot right below it...basically under the top buckle.
We let him go barefoot that morning and in a few hrs they had mostly cleared up.

The second night, Ian ran away from us when we said it was shoe time. As I gently led him downstairs he growled "I don't like mommy. I don't like daddy. I don't like Anna. I don't like Sam." (Sam's the cat). Despite his grumblings, he still let us put them on easily. In the morning, the spots by his toes were back, one of them was raw, and there were 2 red spots above the back of each heel.

Tonight he gave me a few kicks before I put them on. I cut pieces of the Duoderm that Ponseti had given us and placed them over his sore spots and put some thicker socks on him. He wore them for awhile before saying "My shoes are hurting me." He went to sleep easily but awoke about an hr later sobbing about his shoes hurting him. Nothing I did calmed him down. He was obviously in pain, so I took off the shoes and patches to check his feet. Sure enough, the red areas are redder and bigger.
So...leave them on, torture the kid, have worse sores in the morning, or take them off and let the spots heal up a little. Brad is out, so I made the reluctant yet executive desision to take them off.

We have some creative thinking to do tomorrow...we'll take ideas.

Hurray!!

2006-02-20T21:56:00.000-08:00

We arrived last night in Iowa City. We made good time and it took us about 8 hrs to get here. The kids were angels in the car (thank God for portable DVD players!) and we were checked into the RM house before dinner. We had our appt this morning and Ian does not need casts for now! Yahoo! They took impressions of his feet so we could get new shoes and he will be in the Mitchell bar/shoes for 14-16 hrs/night. So we figure we'll put them on by 6:30 pm, take them off by 9:00 am. We are all kind of stumped by the raw areas Ian gets because they haven't had problems with any of the other kids in the Mitchells, but they gave us something called DuoDerm to put on his feet...a patch kind of like a second skin. Also we are to keep the shoes set at 40 degrees and gradually turn them out 5 degrees every few weeks until we reach 60. We will come back in Aug. for a checkup. Although we were receiving treatment in Cincinnati too, Brad and I both feel they are much more thorough out here and so we think the trips are worth it despite the inconvienence. Ian's feet are still abnormal but for now we don't have to deal with the casts or tenotomies or anything like that and we are extremely grateful. So instead of dragging around a very heavy and sad Ian for the next 2-3 wks, he gets to run and jump and play just like his big sister. :)
We will head home tomorrow morning.

Once again the level of care and attention here at the U Iowa clinic was unbeatable. It was a busy place but it is obvious everyone is well cared for.
And as for the RM house...it is such an experience everytime we are here. You don't even realize the extent of services they provide if you haven't had to use them. We again met amazing families, and made lots of friends. There were tons of clubfoot kids again, and one in particular who we will stay close in contact with.
Some of these families here are suffering tremendously, and the RM gives them a safe place to come home to every day. You'd think it would be full of sadness here, but it's not. It's filled with hope and compassion and comfort and community. This house and the people we meet here will always hold a special place in our hearts.

Thanks everyone for your prayers as we came out here.
Please pray for Ian as you can over the next few weeks as he gets readjusted to the shoes. We expect lots of sleepless nights and many tears, but please pray with us for a smooth transition and intact skin!!
(We'll add pictures once we get home!)

Trip postponed

2006-02-03T19:22:00.000-08:00

We were supposed to leave this weekend for Iowa, but we've had to cancel. Ian's got sinusitis, strep throat, and scarlet fever. Ugh! We'll reschedule and try again in about 3 wks.

Surprise

2006-01-10T19:08:00.000-08:00

Bet you'd never guess that Kristi Yamaguchi, Mia Hamm, Troy Aikman, Dudley Moore, and Damon Wayans were ALL born with clubfeet. :)

More to come

2006-01-09T14:28:00.000-08:00

Soon I'll be adding links to Ponseti information, other clubfoot kids, and a few other goodies. Stay tuned!

Ian's feet...almost 2 1/2 yrs old

2006-01-09T14:00:00.000-08:00

Quirky little toes...as you can see, Ian has a large gap in between his big toe & the others. He also still curls his toes under, but not as much as he used to.
Cute, aren't they?

This bottom photo shows how much dorsiflexion he's lost.

Trouble w/ shoes AGAIN

2006-01-09T13:41:00.000-08:00

Although these 3 mths in the shoes went well, we started having trouble afterwards. We went through a few pairs trying to find the right size, and even managed to break off chunks of a shoe banging it against the floor. We were glad Ian was able to test these shoes for Mr. Mitchell, as he was still trying to get the correct design for toddlers down. LOL Stronger plastic. Definately.
Ian started getting raw spots under the straps, toward the inside of his foot. Again, we tried everythng to help, but with no luck. We even went back to the old Markell shoes in the hopes it would help. We always ended up with raw areas again. We knew how important the shoes were, and yet Ian was always hurting and we were sleep deprived. We'd try again every few days or weeks with no luck and then stop again.
In Oct. 05 we took Ian back for his foot checkup. Dr. Von Stein said his feet looked good but he had lost dorsiflexion (heel cords tightening up again). Her recommendation was to leave him alone at this time unless it got worse. She did not have much advice about the shoes but sympathized and told us to do our best.

(We're now finally up to date in our story!)
In Dec. I called Dr. Ponseti to ask for advice about the shoes. He recommended coming back out to get help with it, because that's a big part of what they do out there, getting the families to comply with the shoe part of the treatment. He also recommended being aggressive about treating the loss of dorsiflexion and possibly getting a new casting.
Our trip is scheduled for the 5th of February. We will again stay at the RM house. We are praying for good weather for the trip, room at the house, and no sickness until we go (wouldn't be able to stay at the RM house with germs!). We are also praying Ian does not need a casting and the dorsiflexion can be regained with the shoes.
More in a few weeks!

Ian in Mitchell shoes

2006-01-09T13:33:00.000-08:00

Sitting up & rolling over in shoes

2006-01-09T13:30:00.000-08:00

Baby on the go

Home we go...

2006-01-09T13:16:00.000-08:00

At the end of the week we had our follow up appt. They took off the cast, manipulated both feet, and put casts on BOTH legs. I was not prepared at all for how heavy a big 6 mth old baby could be with 2 wet plaster casts on, but I thought my back was going to break as we carried him out of there. LOL We drove home that afternoon to Cincinnati with a very unhappy baby and a new pair of the coolest shoes we'd ever seen. Ian cried all the way from Iowa to Ohio and it was a looong drive.
I believe it was a wk later that we went to remove the casts at Ian's orthopaedic doctor here and got started on the shoes. Once again we'd have to use the shoes full time for 3 mths.Ian learned how to do everything in those shoes from crawling to taking steps, and even found ways to sleep, with some help from well placed pillows and rolled up blankets.

Some new friends

2006-01-09T13:11:00.000-08:00

More Iowa pictures

2006-01-09T13:09:00.000-08:00

A week in Iowa

2006-01-09T12:58:00.000-08:00

That night after the appt was absolutely terrible. They had sent us on with some Tylenol and told us it would be enough. But Ian's foot swelled more than normal and he screamed the house down until about 2:30 when they called in some Tylenol w/ codeine for him. Brad had to drive out in a heavy snowstorm to go fetch it!
Now, Ian at this point had a pretty high pain tolerance. Not only had he dealt with the feet problem, but he was also used to reflux and had been through a hospitalization at 2 wks old w/ viral meningitis. But he was in some major pain that night and nothing calmed him. We walked, swang, sang songs, prayed, and cried for half the night. Even after Brad came with the codeine Tylenol Ian still woke & fussed on & off until morning. NOT a fun time.
But the next day he did better and the swelling had gone down. We kept ourselves busy in the playroom at the house, or at the mall or childrens museum. Anna was a trooper but being away from home was getting to her.

Iowa City here we come

2006-01-09T12:44:00.000-08:00

In February, we packed up the kids (Ian who was 6 mths old & Anna who was 3) & drove out to Iowa City. We stayed at the Ronald McDonald house, which was an amazing place and I encourage you all to support it in any way you can. Volunteer, make some meals, donate items, save pop can tabs, whatever. If not for them, we would have had to spend money on a week's worth of hotel and restaurant bills.
We were lucky to be there for a week, many families had been there for months and months. While we were there we were able to meet some other clubfoot kids. Anna made quick friends with Cassy and we even met a little girl all the way from China. It was very encouraging to see them run and jump and see how normal their little legs looked! I also loved looking at all the pictures and letters of all the clubfoot kids that had stayed in the house, which lined the walls.
Our appt was on a mon, and they cut Ian's left heel cord again. It was done with just a local injection, with me, my husband, and Anna in the room. I was shocked at how quick and easy it was. They recasted it and told us to come back in a week.
Dr. Ponseti was absolutely wonderful, as was everyone else in the clinic. It was also nice to see the quilt I had read about that some famiies had made for him and was hung up, showing pictures of various babies.

Not quite fixed yet.

2006-01-09T12:26:00.000-08:00

After struggle with the shoes for a long time, we emailed Dr. Ponseti and sent him x rays and pictures of Ian's feet. He told us that Ian had an atypical foot (the left one) that would need a little bit of a different manipulation and perhaps another tenotomy. We made an appt to see him in February of 04.
We also chose to go there because we did not want Ian to have to go under general anesthesia again. The risk of complications is small, but we didn't see the purpose if it could be done with a local injection.
We were extremely impressed with his quick response, his caring attitude, and the approachability of his office.
Dr. Ponseti also mentioned there was a new kind of shoe available, called the Mitchell sandal that they were having a lot of success with.
Unfortunately, our insurance did not agree with our need to go to Iowa and they refused to pay the bills for it, despite a few appeals. Grr...

Before we go on, so who is this Dr. Ponseti anyway?

2006-01-09T12:03:00.000-08:00

Dr. Ponseti is the man who pioneered the method we are using. He is 90-ish yrs old and still sees babies out at the U of Iowa hospital. You can read more in the links, but basically, years and years ago, after studying clubfeet carefully, he came to see that the tendons and ligaments in clubfeet are actually very flexible and could be manipulated into the correct position. With this deformity, the feet are actually formed normally in the womb, but something happens in the 2nd trimester that causes them to twist and tighten. Lots of speculations as to why, and hopefully they'll find answers soon. We will actually be participating in a study through the University of Texas to help find the clubfoot gene.

Anyway, back to Dr. Ponseti. Unfortunately, many other collegues dismissed his ideas and continued to do surgeries. It has only been recently, with the advent of the internet, that families using this method have made websites and help spread the information that there is an alternative. More and more doctors are now being trained in this way and there have been projects set up overseas to teach it. This is especially important in poor countries that don't have the resources or money for surgeries. The Ponseti method is low cost and easy to do.

Dr. Ponseti has a lot of grateful parents out there and a lot of happy babies too.
People call him Papa Ponseti for a reason.

Celebrating Ian's first REAL bath!

2006-01-09T11:52:00.000-08:00

This tub is the mother of all baby tubs...it's called the Euro bath. It's huge, and it would have been absolutely perfect for those long cast-softening baths every week. It has lots of supports in it to keep the baby upright and steady. Unfortunately we didn't discover it until very late...

Stage 3-full time dennis browne bar

2006-01-09T11:36:00.000-08:00

After those casts came off, it was time for the dennis browne bar. For 3 months it must be worn full time, except for an hour off a day (for baths and exercises).
It was SO good to be done with the casts, with the weekly vinegar baths, with the plaster dust everywhere! It was SO nice to see his little legs again after being hid away for over 3 months! His feet were little pudgy things, and the casts create a lot of extra skin around the ankle bone that kind of look like those wrinkly pups.
Eventually the babies grow into that skin!
We had a very difficult time with the shoes staying on. His worse foot, the left, kept popping out. The shoes must be pulled as tight as possible and worn with socks to eliminate friction as the baby moves which causes sores. But it just would not stay on, even after placing a foam pad at the top back of the shoe above his heel.
We did the best we could though.
The dennis browne bar is essential in preventing relapses and must be worn according to the guidelines. Without it, 80% of the of the feet relapse.

2nd stage-tenotomy

2006-01-09T11:20:00.000-08:00

After about 6 or 7 casts Ian had a tenotomy done. This is where the achilles tendon is cut so that the heel is able to drop down and can be planted flat. Most kids will need this done, but not all. In infants it is a relatively easy procedure and the heel cord grows back quickly. Ian's doctor here did it under general anesthesia, but out in Iowa they do it under local.
It was relatively quick but it's not fun to see your child go under and be carried into an operating room.
They told us Ian would have small areas of blood on the heels of the casts afterwards but it would stop bleeding soon. He had the tenotomy in the morning and by dinner that evening they were still bleeding and those small spots were pretty large. Luckily they stopped soon afterwards.
Now, if there is anything less fun than months of comments and stares about your newborn being in full legged casts, it is getting more comments and stares about the BLOOD on those casts.

But what's a mom to do with all that blood? Well, I sat on the floor with my daughters poster paints and painted the back of those things white, that's what I did! LOL (This COULD soften the cast a little, I guess, so I don't recommend it).
Those casts stayed on for a little over a month before we moved on to stage 3.
That's really how we took everything with Ian's feet. We celebrated the end of each stage and moved on to the next one.

A few days old & pic of feet halfway through initial casting period

2006-01-09T11:10:00.000-08:00

The first stage

2006-01-09T09:02:00.000-08:00

The first stage of the Ponseti method consists of plaster casts from groin to toes. It starts when the baby is a few days old. The feet are slowly manipulated into the correct position. Every week the old casts are removed, the feet are manipulated a little more, and recasted.
Ian's got his first casts when he was 4 days old. I cried like a baby. LOL I'd spent a few days holding him in his favorite position, a curled up ball. But now he had these heavy, clunky, cold damp casts to deal with. I didn't know how to hold him, carry him, or nurse him because I was afraid of hurting him further, but after a few days, we figured it out. In addition, we had to figure out how to protect the casts from diaper blowouts and how to minimize the top edges of the casts from cutting into his skin. We solved those problems mostly by tucking a circle of cotton around the edges and cutting off the tops of a childs pair of socks and tucking it around the edges too.

So what in the world are clubfeet anyway?

2006-01-09T08:44:00.000-08:00

That's exactly what we wondered when we heard it! Clubfoot is a very common birth defect, affecting more boys than girls and can run in families. It affects the tendons, ligaments, bones, muscles, and nerves in the feet and legs. If the child has one clubfoot, that foot will usually be a little smaller than the other one. The muscle in the calf will also often be smaller.
In Ian's case, he has severe bilateral clubfeet. At least they will match! It's too early to tell what his calves will look like but since it is due to severity, he will probably have skinny calves. Not a big deal all things considering.
In less developed countries this is one of the most common crippling diseases there are aside from polio. If not treated, the child will walk on the outer edges/top side of the foot. Here is a picture of what untreated clubfoot looks like.

For Ian

2006-01-09T08:22:00.000-08:00

We're creating this blog in an attempt to document our son's treatment and progress for clubfeet and provide information on the Ponseti method for other clubfeet families.

Ian was born in Aug. 2003 with severe bilateral clubfeet and has been treated with the Ponseti method both here in Cincinnati and in Iowa City.
We found out during our 20 wk u/s about Ian's feet and we immediately went home and resarched it on the internet. We were thrilled to find out there was a nonsurgical method to treat it and learned a lot from the websites of other parents. Dr. Ponseti, who pioneered the method, works out in Iowa City, still seeing babies and training other doctors.
While most of our treatment was done here in Cincinnati with Dr. Von Stein, who is Ponseti trained, we've also had to go to Iowa because Ian has atypical clubfeet which required a little more help. Thanks to the internet and the websites of clubfeet families, word has spread about this method and more and more doctors are using it.
When used correctly and early, the Ponseti method has up to a 90% rate of success. Those kids who do end up with surgery often need more operations, have large scars, and have stiff, painful feet in the future.