Tired Mama: May 2012

One of Willem's special needs are his special feet. He has bilateral club foot. This is his need that is visible to the eye so people are curious about it. You can see the questions in people's eyes. Well before casting you could see the questions in the adult people's eyes, but not many asked about them, just kinda looked at him with pity or...? Now with full leg casts, the adults are not afraid to ask. 'TWO Broken Legs!!?' or 'WHAT happened to HIM!?' or 'Oh! You poor little guy, WHAT happened to you!? (as they're glaring at me)' Really! They do often ask just like that. Depending on how they ask, sometimes we tell them, 'He's into skydiving.' And now I've been telling people that are rude, 'No, he doesn't have any broken legs, and HE has really good manners.' I don't know, before Willem, maybe I would have reacted the same? I'd like to think I wouldn't have.

The little ones have been very open and not afraid to ask, 'What happened to his feet? How come he has those on?' And they are so accepting of the answer, that he was born with special feet, feet that were not quite the same as theirs looked when they were born.

I had a year to research after his file was locked for us until he came home. It's what I love to do, research things. So research I did. I read blogs of people who had adopted kids with club feet, (another thing I love to do - read adoption blogs). I researched club foot on the internet, read books on club foot, and talked to other people with kids with club foot. Pretty soon I started seeing that lots of people with lots of experience with club foot talked about Iowa City. So I started researching that too - why did so many people talk about bringing their kids there. What was so great about Iowa City.

I had also read about Ponseti method of correcting club foot, and I learned that Dr. Ponseti had his practice in Iowa City. The Ponseti method of treatment for clubfoot was developed by Dr. Ponseti at the University of Iowa. This method of treatment is nearly 100% effective when done properly by a trained health care provider and is considered the 'gold standard' of treatment for club foot (according to the Ponseti International For The Treatment Of Clubfoot Website For Parents). Dr. Ponseti passed away just several years ago at the age of 95, continuing his work right up until his death.

At first I was very excited because on the Ponseti International website there is a listing of doctors certified in the Ponseti method and there were doctors listed in the Twin Cities. So I started checking on them to see who had gone to these doctors for treatment, and I did not hear good things. People were not satisfied with treatment there, even for infants.

Someone recommended to me to email Dr. Morcuende down in Iowa City and send Willem's information to them to see what they would recommend. So I did that, emailed Dr. M, and heard back from him almost right away. He said he could not recommend anyone in Minnesota to properly treat Willem's club feet. Maybe an infant, but for sure not an older child. He told me that he would be honored to treat his feet. At first I was disappointed - it seemed so far to drive to Iowa City. And don't get me wrong, it is a long drive! But I've found it's not so far at all, really. I knew in the end that I wanted Willem's feet treated in the best way possible right from the beginning. And I knew that if I bring him to Iowa City no matter what happened it would be the right treatment. I knew that if I chose to bring him somewhere else, what could happen is that he receives treatment that is not proper and not only fails, but could make his feet worse (I've read over and over of this happening). Then I would be bringing him to Iowa City and starting all over for correction of the failed treatment and then proper treatment to correct his feet. And as we've been coming week after week, each time I've been here I've met up with people that have come from all over the country for treatment here, many of them coming after they've had failed treatment in their home town. I've been told over and over again, you made the right choice, you made a wise choice, to bring him here right from the beginning. So now I feel good, and I'm thankful that I am as close as I am.

Dr. Morcuende, who treats Willem, worked directly with Dr. Ponseti for many years working along side him, treating children with clubfoot. He is the co-founder of the PonsetiPonseti method.

What do they do to Willem's feet at our visits? At each visit the doctor works with each foot for less than 5 minutes massaging it and turning it. Then they start the casting process. The doctor holds the foot in position and Maria, the nurse, applies the cast. First they cast the foot and up to the knee with a plaster cast and the doctor again works with the foot and cast as it's hardening making sure it stays in the correct position. They then apply a plaster cast up to the top of his leg. After the plaster cast has dried a bit, they then apply a fiberglass layer on top. The reason they apply fiberglass on top is because he's older and very active. This protects the plaster cast from wearing through or breaking due to his crawling and walking on the casts. He does wear holes right through the fiberglass layer at the knees and toes.

The first few trips down to Iowa City I left in the middle of the night (3:30 a.m. and 2:30 a.m.) and went straight to my appointment. The rest of the trips I've actually left on Sunday afternoon and stayed at Ronald Mc Donald House right near the university hospital. In one sense it's a bit hard doing this because I have to leave the girls, but it sure makes it a bit less nerve wracking to be there the evening before. Each time I've been there I've met wonderful people who are being treated at the U there. I met two families (one of the families two weekends) who had their 5 or 6 year olds there for a tendon transfer surgery. These were families who had their child treated as infants locally but have come to Iowa to see Dr. M because their foot had relapsed.

Ronald Mc Donald House

Growing up near an Amish community and seeing them in town with their horses and buggies, I've always been fascinated by them. Several weekends I've been at RMH I've seen Amish people there. I have not approached them in conversation because I've always thought they are a very private people and didn't want to intrude on their privacy. But two weekends they've struck up a conversation with me. The one weekend there were two women and they were curious about Willem and his feet. They told me they had a 20 year old relative who was born with club feet and he was treated with casting as an infant. This past weekend, there was an Amish woman and a young girl there. When we went into the play room she started talking to me. It was her brother that had club foot that had been treated just the same way as Willem is being treated. She was a very friendly person and told me that she had five children and her youngest had been in NICU there for 7 weeks. The baby is fighting for her life and has a long way to go, but is progressing forward a step at a time. This woman had been staying there since the baby was born (maybe she had been home twice to see her other children), but her husband had traveled to drop their oldest who is 7 years old off to be with her mama for a bit. Very fun visiting with her. She was very interested and fascinated with how it is that Willem is my son. She asked if I get to keep him after his treatment is over, and how about America - do people adopt kids here too? It was a fun visit.

Here is a series of his casting sessions so far...

Casting #1

Dr. M applying the plaster cast

1st set of casts

After removal of 1st set of casts

Casting #2

2nd set of casts

After removal of 2nd set of casts

Casting #3

3rd set of casts

(No he's not in pain...he's saying 'cheese')

Cast removal

After removal of 3rd set of casts

Right

Left

Casting #4

4th set of casts

(Trying for Vikings colors)

After removal of 4th set of casts...

...looking good!

Yes, Bear's feet are looking good too!

Casting #5

5th set of casts

Below after removal of 5th set of casts

Here he's applying his own cast.

I had a helper this trip.

Two of the doctors being trained by Dr. M.

One from Australia and one from Nigeria?

And now we are getting towards the end of Willem's casting. He has his 6th and last set of corrective casts on now. On June 6th I will travel down and he will have a tenotomy done on his feet to lengthen his heel tendons. Then he will have casts put on for 3-4 weeks to hold that in place and let the tendons heal. Then it's on to bracing and a new phase in Willem's life.

Casting #6