Consultation with Dr. Kayes

July 31st was our consultation with Dr. Kayes, a pediatric orthopedic doctor at the Peyton Manning Children's Hospital at St. Vincent's Hospital in Indianapolis.  It felt like we had been waiting so long to talk to someone.  I was a nervous wreck before the appointment, but could not wait to get down there and meet him.

Up until about the week before, I had plans to go by myself.  That made me sad, as I already felt so lonely and overwhelmed by this choice, but it made sense.  Jay didn't need to take any time off of work that wasn't necessary.  However, after talking with Jay more about Oliver's feet,  he decided to take the afternoon off and we would take Oliver with us to see if the doctor would look at Oliver's feet also.  We weren't asking him to diagnose anything, but just wanted his opinion.  If he felt like something was wrong, we would come back for an appointment just for Oliver.  I prayed that he would tell us Oliver's feet looked good and that wasn't necessary.

I barely slept the night before the appointment.  I wasn't exactly sleeping much lately anyway, so that wasn't unusual.  Stress was really taking a toll.  The morning of our appointment, I took Oliver to his speech therapy and then dropped off Lucy with my mother-in-law.  Thanks to lovely pregnancy hormones I was so sad to drop her off.  I usually don't spend a lot of time away from her and I hated to leave her for the day.

Oliver and I came home and got Jay and headed to Indianapolis.  We had plenty of time which was nice since I wasn't exactly sure where we were going.  Once we got closer to the hospital, I realized I had been down there before (in college).  The hospital campus is pretty big but I recognized exactly where we were.  Thankfully there was a parking garage directly across from the entrance we were supposed to use, and the orthopedic office was right inside of that entrance.  Very, very easy.

We waited f.o.r.e.v.e.r.  Or at least it felt that way.  A friend of mine texted to see how our appointment went, and I vented about how we were still waiting.  We were in the waiting room almost an hour (we got there a little early, so probably 45 minutes past our appointment time) before we got called back.  I understand that doctors get behind, especially by that time in the afternoon, but I was such a nervous wreck that it was driving me nuts.  Plus, my back and my hips and everything else were hurting from the long drive down.  Cue the pregnancy crankiness.  Thankfully they had some pretty cool video games in the waiting area that Oliver enjoyed playing.

We finally got called back and the nurse asked us some basic questions.  Oliver was already starting to get wound up being in the room and climbing up and down on the exam table.  I could feel my stress level rising and I was just praying he wasn't going to be completely crazy during our talk with the doctor. We had explained to him how important this was and that we needed to be able to talk to the doctor.  We even let him bring in his Nintendo 3DS to hopefully keep him occupied.

Finally Dr. Kayes came in.  We introduced ourselves, and Oliver, and said that he was our first clubfoot child.  Oliver was sitting on the exam table with his shoes off, and right away Dr. Kayes started making conversation with Oliver and moving his feet around.  I kind of held my breath to see what he said.  After playing with them some more, he said Oliver's feet looked great! I think Jay and I both let out a sigh of relief.  I explained that he hadn't seen a doctor for awhile so we were hoping to hear that.  He had Oliver stand up and turn around and said although his right foot was a little tighter than his left that they looked great.  He was amazed by Oliver's treatment (no tenotomy, very early release from braces, etc) and asked a lot of questions about that.  He even looked at Jay's foot (Jay was wearing sandals) and asked a couple of questions about what we knew about his surgery and treatment as well.

Even though we had to wait awhile for our appointment, I felt like Dr. Kayes made sure that we had plenty of time with him.  He apologized that we had to make such a drive to get to him, and I kind of laughed and said, "Well, its either here to you or to St. Louis to see Dr. Dobbs...this is much closer."  I explained that I had been in touch with Dr. Dobbs, and Dr. Kayes said he had a couple of patients that he has actually sent to St. Louis to Dr. Dobbs for a second opinion.  He said he doesn't hesitate to get in touch with him if there is ever a situation where he feels he could use Dr. Dobbs' expertise.  He acknowledged that Dr. Dobbs is a clubfoot expert, and I thought it was great that he utilizes him when necessary.  Dr. Kayes was very humble, and kind.  He asked several times what other questions we had, and how he could help us feel comfortable with what to expect at this point.  I told him about how Oliver had KAFO braces, and asked if he ever used them.  He said no, not really, because of the long-term benefits of the bar and boots.  That brace is really the Ponseti standard, so I understand why he uses that.  I asked if we could get the Dobbs bar (which is hinged and the baby can move his feet independently instead of always together like with the solid bar), and he said we could.  That was good to hear.  He asked how we knew about the bar and boots if Oliver had used KAFO braces.  I had to laugh a little and say, "well, the Internet."  If he only knew how many hours upon hours I had spent researching!

During all of this, Oliver was much more...social, than I expected.  That's one way to put it.  He kept going up to Dr. Kayes and saying, "Hey! Look at my game, look at this level!"  and showing him something on his 3DS.  I wanted to crawl under my chair, and drag Oliver with me.  But Dr. Kayes took it all in stride.  He would smile and even ask Oliver, "Oh yeah?  Let me see that again."  He was so nice and easy-going with Oliver that it really put me at ease.

The treatment Dr. Kayes described was pretty much exactly what I expected.  He said just to give him a call after the baby is born, and we'll set up appointments.  The first cast will go on a week or two after he is born; whenever I feel up to making the trip.  We'll change out casts once a week for several weeks until the feet are positioned correctly.  There's a good chance Max will need a tenotomy, but I'm still praying we can avoid that like Oliver did.  If he does need it, it'll be an in-office procedure and not in an operating room. I was relieved to hear that.  A final cast will go on after that and stay on approximately 3 weeks.   After that Max will start wearing the bar and boots brace.  The first three months of brace wear will be 23 hours a day, 7 days a week.  After the first three months, we will slowly wean him down: one month 20-22 hours, one month 18-20 hours, one month 16-18 hours and one month 14-16 hours. Eventually he'll get down to just wearing them at bedtime until he is about 4 years old.  That is the part that I really struggle with.  I can't imagine having a child in braces at bedtime for that long when Oliver was done so early.  But I can't let myself go there.  Not yet.  Max isn't even born yet; I can't let myself imagine him as a toddler in braces at bedtime.

I left the appointment feeling much, much better than I expected.  I'll admit, I went in with a "this guy is going to need to impress me" attitude.  I really looked at the appointment as something to check off my list to say I had looked at all of our "local" options before deciding that we needed to see Dr. Dobbs in St. Louis.  How we were going to afford to get there, I didn't know.  How we were going to arrange childcare, I had no idea.  But I didn't expect to like Dr. Kayes, to be really honest.  I was surprised at how much I liked him and felt at ease with him.  Jay and I both felt comfortable with him, and I was so glad that Jay had been part of that day's appointment.  I needed his input.

I left the appointment feeling like a slight weight had been lifted.  Finally, we had a doctor.  I still had this nagging feeling that I wished we could be making the trip to St. Louis.  I really liked Dr. Dobbs, and I knew he was one of the very best.  But logistically, this made so much more sense.  And if we ever feel like we need some extra help or attention, we know we can go to St. Louis.  

After the appointment, I was able to meet up with a friend who lived in Indianapolis and had a bunch of nursing and baby stuff for me.  We had actually never met in person before despite being in touch pretty much daily on facebook, text messages, etc.  Amal was so super sweet to wait for us during our appointment.  It was lovely to meet her, and I hope that during some of our many other appointments we will be able to see her again.

The drive home was exhausting.  Physically I was in a lot of pain...Jay had gone into work at 2:30 that morning and worked 8 hours before leaving so, understandably, I did the majority of the driving that day.  I called both of my parents to let them know how our appointment had gone, but I wasn't as talkative as I normally would have been because I was just so drained.  It seemed like two months worth of stress, exhaustion, and anxiety had caught up to me.  We had hoped to make it home in time for Oliver to get to play in his soccer game, but we definitely did not.  I couldn't wait to pick up our Lucy girl and just get home.

I went to bed that night with somewhat of a clear mind for the first time in awhile.  I posted this as my facebook status:

An exhausting day, both mentally and physically. But a very good one. I'm so thankful for all the prayers and messages we received today. I feel so much relief that today is over! Two months ago I was devastated with the news we had just received and for the first time since then I am going to bed with some peace of mind. Thank you Lord.


I expected to wake up the next day and feel so much better.  But to be honest, the next day I felt awful. Physically, I was exhausted and hurting all over.  It was like I was forcing myself to just move and take one step after another.  Mentally it was like all I could think was very basic thoughts about what needed to be done and paid attention to in that very moment.  The kids and I got through the day with me functioning on a very basic "need to do it" level.  I think the stress, anxiety, build-up, fatigue, and worry of the past two months had left me stripped of everything.  I wanted to feel relieved and happy about the day before but felt very numb.  It had all certainly taken its toll.

Quick Overview of Clubfoot and the Ponseti Method

When I mention that we have a son who was born with clubfoot, or when I say that we are expecting another baby with the same condition, many people ask what exactly it is.  I wanted to do a quick post here to give some basic information about what clubfoot is, the treatment for it, and a bit about our family history with it.  Forgive me for not being too specific or scholarly with this...my history major background is cringing at the lack of citations and proof reading. :)  One thing I have learned is there is a lot of variation with how things can happen with clubfoot.  Each case is unique.

Most of my information has come from Ponseti International website.  You can visit it here:  http://www.ponseti.info

Clubfoot is a treatable birth defect that occurs in approximately 1 in every 1,000 live births.  About half of all of those affected with clubfoot have it in both feet, known as bilateral clubfoot.  It occurs in males twice as frequently as females.  I find this especially interesting since Oliver had bilateral clubfoot, Lucy wasn't affected, and now we have another son on the way who is expected to have a right clubfoot.

Physicians have observed that fetuses that develop clubfoot start with a normal foot and then the foot begins to turn inward around the third month. Most children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth. (http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/learn-about-clubfoot.html)

It is not known exactly what causes clubfoot.  While it is not always genetic, there is a family history in some cases. My husband, Jay, was born with clubfoot.  He had casts and an extensive surgery on one foot. 

Thankfully, the surgery that Jay had as a baby is no longer the norm for treatment of clubfoot.  Jay has a lot of pain in that foot, especially if he is on his feet for a long period of time.  The "gold standard" for treating clubfoot now is called the Ponseti method. 

The Ponseti method is mainly non-surgical.  It is recommended that it begins within the first week or two after birth to take advantage of the baby's flexibility.  The baby's foot is turned into a specific position and casted.  The casts are then changed every 5-7 days.  Most clubfeet can be corrected with 5-7 castings (sometimes less, sometimes more). At the end of the castings, a minor surgery is usually needed to lengthen the baby's tendon(s).  This is called a tenotomy and the baby will be casted again afterwards. This cast is left on for a longer period of time (usually 3 weeks, although this can vary).  Some doctors do this surgery in office with a local anesthetic; others prefer to do it in an operating room under general anesthesia. 

After the last casts come off, the baby wears a brace.  Called "bar and boots", this is a brace that keeps the baby's feet in place.  A pair of "shoes" (special orthodic shoes called AFOs) is placed at a specific degree keeping the baby's feet turned outwards and set onto a bar.  There are different types of bar and boots braces.  Some are a fixed bar, in which the baby must move their feet simultaneously.  Others are a hinged bar (called a Dobbs bar, developed by Dr. Matthew Dobbs, one of the nation's leading experts in clubfoot) and allows the baby to move their feet separately.  It is recommended that the child wear the brace for 23 hours a day for the first 3 months and then slowly work down to wearing the brace just while they are sleeping.  Children usually wear the brace during the night for up to 4 years (sometimes more) to prevent relapse.  This website shows the Dobbs bar and some adorable children wearing them! http://www.dobbsbrace.com/
 
Oliver's treatment seemed to follow the Ponseti method except for the bracing.  He was also one of the few who did not need the tendon surgery.  Oliver wore KAFO braces and was done just after his first birthday.  As I read about stories of relapse, I am amazed at how God took care of our little guy.  I'm not sure why our orthopedic doctor at the time varied from the Ponseti method when it came to Oliver's bracing treatment.  I'm just thankful it all worked out.

While it is said that the Ponseti method is not exactly difficult to learn, it is very precise.  We live just outside of a major city in Indiana that has a large orthopedic practice.  However, there are no orthopedic doctors sub-specialized in pediatrics within this group, so none of them know how to treat clubfoot.  Each cast has to be set a specific degree and variation.  The doctor that we saw with Oliver is no longer practicing due to health issues, so we are in the process of looking at our options.  In about a week and a half I have a consultation with a doctor about two hours away.  I have also been in touch with Dr. Dobbs who is located in St. Louis.  After my consultation with the doctor who is located in our state, Jay and I will discuss what option would be best for our family.

It never ceased to amaze me how happy this little guy was. He has brought us so much joy!

Oliver's Braces

After we found out the news that Oliver was going to be done with casts on October 30, 2008 we had to go and get him fitted for his KAFO (Knee, Ankle, Foot Orthodic) braces.  Honestly, I can't remember now how soon after his casts came off that we went for the fitting.  I don't think it was the same day, perhaps the next day.  Oliver had a weekend of "free feet" in between getting his casts off and getting his new braces.  It was so nice to have that time with him!  I remember being ecstatic that the casts were off and we were ready for the new phase of his treatment.  I really had no idea what to expect with the braces, but surely they had to be better than casts, right?!

When we went for his braces fitting, they showed us a bunch of different "plates" that had design on them for the braces.  We decided on the blue swirl one, and I remember thinking how cute the girly patterns were. Then the casted him (ugh, I grew to HATE anything to do with casts) with some quick-setting material and cut the casts off.  Boy was it nice to see a cast come off right away!  Oliver was fidgety during the casting, and I just kept telling him it was going to come right off.  He was pretty much a pro at being casted by this point, but you could tell he was still not a big fan of the whole process.

I didn't think the braces would be too big of a deal. I'm not sure why...it just seemed so much better having a baby in leg braces than in casts.  I still have both sets of Oliver's leg braces.  They look so tiny now when I look at them.  Its hard to believe he was just two months old when he got his first pair.

November 2008.  Oliver's first pair of KAFO (Knee, Ankle, Foot Orthodic) braces.

We got to pick out the blue swirl design for them. I remember thinking how much cuter the girl patterns were. ;)

His little leg. He would end up having two sets of these braces before he was done with them. They were slightly adjustable; I think each set was lengthened a bit one time.

We became experts on which socks fit best with the braces.  Tall, thin socks (Target Circo ones were my favorite.) quickly filled his sock drawer. 

I was somewhat surprised by how "bulky" the braces seemed.  The casts were heavy and big, but the braces were really wide especially at the top.  The first night we got them, I tried to put him in a pouch sling and couldn't really get him in.  I had been able to wear him in that particular sling while he was in casts, but the braces were really just too big.  I was taken off guard by that and was sad.  Just another reminder of how things were never going to be "normal" for us.

Oliver had to wear his braces for about 23 hours a day.  We were allowed to take them off for an hour a day, and I usually split it up into two half hour times.  At first I was very, very strict about it but I'll admit as the months went on there were times I would let him be out of them for a bit longer.  Not too long, I didn't want his feet to turn back in, but I didn't watch the clock like a hawk every time I took them off.

It was awesome being able to give our little guy a real bath.  I loved those times with him.  In that way, the braces were WAY better than the casts.

Oliver adjusted really well to the braces.  He never really seemed bothered by them at all.  He was such a happy, easy going baby.  Amazing, really, considering all he had gone through in such a short period of time. 

Our happy little guy.  Pants that were wide and/or stretchy were a necessity to fit over his braces. They were quite wide, especially at the top.

As Oliver got bigger and more mobile, especially at night, his braces made co-sleeping harder.  I would often get bruises from him kicking me during the night.  I considered transitioning him to his own bed many times, but I really loved having him close.  Despite the obstacles, co-sleeping still worked best for us.

In some ways, I think having the braces made things a little harder for Oliver.  He didn't sit up on his own until almost 7 months.  He rolled from his belly to his back very early (at one month) but didn't roll from back to belly until about 7 months also.  Who knows....none of those things made him "delayed" exactly.  It was just you could tell the braces would get in his way sometimes.

My sweet boy learning to sit up on his own.  Look at those awesome-looking feet! :)

Once Oliver was in braces, we went back to Dr. Cummiskey after one month and then every 3 months.  Oliver continued to wear the braces for 23 hours for most of that time.  Around 8 months old, I took him for a routine check-up and was told he could just wear them at night.  I was shocked! I really didn't know what the wearing schedule would be; it was all just kind of touch and go for awhile to see how he was doing.  We went back about two and a half months later to make sure he wasn't relapsing, and that check-up went awesome as well.

Having Oliver in braces just at night made our life so different.  We were able to put him in a high chair at a restaurant, something we hadn't been able to do before because it was hard to get the high chair close enough to the table since he couldn't bend his knees.  Just carrying him felt so different.  He never fought us to put them on at night, and it just seemed like we were slowly moving away from all that we went through with him as an infant.  It was nice.

Oliver around 8 months old. Enjoying some braces free time. His feet look perfect!

Oliver's next appointment was when he was just over a year old.  He wasn't quite walking yet, but the doctor was able to see him walk holding on to my hands and see how his foot placement was.  Dr. Cummiskey was very pleased.

September 2009. It was fun watching Oliver "walk" around the examining room.  He had come so far.

At that check-up in September 2009 we were told that Oliver's feet looked so good that we were going to try going braces-free for awhile and see how he did.  That was the most wonderful news.  I had no doubt that his feet would continue to look perfect.  The possibility of relapse never really entered my mind. Two months later we went back and he still looked great.  Oliver started walking around 14 months or so.

Oliver, November 2009. Two months braces free and his feet remained looking great.

We scheduled another appointment for six months later.  We had hopes that it would be his last appointment. We continued to do the stretches that we had been doing since his casts came off and his feet remained flexible.

Oliver, April 2010.  Seeing him run just made my heart soar.

There is something extremely sweet about seeing this little boy running.  He is truly our walking miracle.

I was a bit nervous before his last appointment with Dr. Cummiskey.  It didn't seem possible that we were actually done.  How could that be? It seemed like we were just coming in for his first casting.

"Really?! I'm done?! YAY!"

 It was such a bittersweet appointment.  I really didn't want to tell these two amazing people good-bye, and yet I was *thrilled* that we didn't have to come back and see them.  At that appointment, Nurse Deb told us that a mother had come in with her infant son who also had clubfoot.  She asked if we would mind going to see her and showing her what Oliver's feet looked like.  That made the appointment even more special.  We were able to encourage this new mother and tell her how great Oliver had done with treatment.  I have never forgotten that mother or her sweet boy.  They have stayed in my prayers and I have often wondered how they are doing.  Amazingly enough, after we found out about baby Max's foot, I was able to reconnect with that mother.  I had found a clubfoot support group on facebook and she replied to my post.  I feel like that was really a God thing.

When I think of what lies ahead for us with baby Max, the braces part of his treatment is the most unknown.  Of all the doctors I have spoken with, none of them follow the same protocol with bracing as Dr. Cummiskey did. In fact, none of them even use the same type of brace.  They all use a type of "bar and boots" system, where the baby has "shoes" that are attached to a bar between the feet.  I'll do another post about that. Honestly, as I research more, I am amazed that Oliver did not relapse since we stopped his braces so soon.  Most doctors recommend clubfoot babies/children wear their braces for many years, sometimes up until age 4 or 5.  It is almost unheard of to stop at age 1 because the relapse rate is so high.  I am so, so thankful that Oliver did so well. It makes me very nervous and sad to think of what lies ahead for Max.  This is the part where when people say, "Well, you've been through this before at least you know what to expect", I have to say, "Well, no.  Not exactly."  The unknown is always the scariest.

Nurse Deb, Dr. Cummiskey, and Oliver.  These two people will forever keep a very special place in our hearts.  They became like family to us.