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.

Tiny Baby in Leg Casts

It was definitely an adjustment seeing Oliver in casts.  He was so tiny (he was only 6 lbs 14 oz when he was born) and his casts felt so big.  When I was out with him, I would often get questions and stares from strangers.  Thankfully no one ever said anything rude (I've heard from other clubfoot parents who have some horror stories).  But its still felt so strange to have anyone say, "Oh, what a sweet baby. Oh gosh, why does he have casts on his legs?!"  When I had the chance to actually explain to them what was going on, they were always surprised that the casts were not, in fact, a result of foot surgery but instead a series of castings that would hopefully correct his feet without surgery.

One part of Oliver's treatment that was unique and that we will not experience with Max is that each week I had to soak off his plaster casts at home.  I have recently found out that this is not recommended, and the doctors I have spoken with do not have parents do this.  It is because they want as small of a window of time in between casts as possible to prevent the feet from turning back in.  I completely understand this, but I have to admit I'm a little sad.  It was always so nice to  have that one night a week with baby Oliver and his "free" feet and legs.

The first night I had to soak off his casts was a complete disaster.  Jay was working nights, and Oliver was two weeks old.  I really had no idea what I was doing...I had read some suggestions and the nurse had told me a few ideas but it was so awkward!  I was paranoid because his umbilical cord "stump" was still on and I was trying not to get it wet.  I thought doing it in the kitchen sink would be best. Um, no! Our sink was small and I couldn't get him in a comfortable position.  I got out a bucket that fit well into our sink and put water in it, along with some vinegar because that was supposed to help soften the casts.  (This was the only time I used vinegar.  I didn't think it worked that well and it smell was just too strong for me!)  So here I am, trying to hold a 2 week old infant in a bucket of water, up to the top of his thighs without getting his belly button wet.  Ha!  He screamed, I cried, and it took close to two hours!!  We were both soaked by the end.  I started unwrapping his casts at the top and worked my way down.  By the time I got close to his feet I could just slip the bottom "foot" part off. I have never felt such relief as when I was able to get those casts off!  I cried seeing his precious little feet again.

After our first night of soaking off his casts. AMAZING progress! I have recently found out that most doctors do not recommend parents soak the casts off the night before a new cast is put on because of the risk of losing progress, so I am especially grateful that Oliver did so well.  I really looked forward to our one "free" night a week of loving on his little legs and feet.

That first night of no casts I spent so much time just looking at his feet and legs and touching them.  The doctor had warned us that his feet might be especially sensitive, since they weren't used to any stimulation, but Oliver never really seemed to experience this.  As soon as I got his casts off, I wrapped him in a towel and he curled right up on my chest.  I sat with him in the recliner in his room for over an hour just loving my little boy.

On our way to get his second casts put on.  Funny, once they were on it was hard to remember them ever being off.  They quickly became part of our new "normal."

The second casting was emotional as well.  I really, really dreaded that appointment again.  His feet looked so different, and so good, that I hated that they were going to be covered up again.  I just wanted to have a "normal" experience of a baby without casts.  He felt so much smaller without his casts on and I started to feel like I was really missing out on so much of having a newborn. Just the little things really bothered me, like not being able to give him a normal bath and having to really watch what kind of clothes we bought for him to make sure they would fit over his casts.

He seemed to be in a lot of pain with the second castings also.  The doctor did some stretches with him and he cried during those.  That night went better than our first night, though, and each week seemed to get easier and easier.  Well, as easy as it can get when your infant is in casts.  Sometimes I hate saying its "easier".  I don't want people to think it isn't as big of a deal as it really is.  Its all relative.

PJs that did not have feet, and snapped all the way down both legs, became a staple of Oliver's wardrobe. This was his second set of casts.

Grandpa holding a tiny Oliver.

Adding a little bit of love to those plaster casts.

For whatever reason, this set of casts did not go up as high on his legs as some of his earlier ones.  Its kind of hard to tell at the angle of this photo but with each casting, his feet were set at a different degree according to the Ponseti method of treatment.

One thing that did get easier each week was being able to soak off the casts.  I just now remembered that Jay was home for one of the weeks of soaking them off, and he videotaped it.  I haven't watched it since we filmed that, so I will have to try to get that out sometime and watch it.  After that first time of attempting the kitchen sink, I said forget it and just got in the bathtub with him and did it that way.  By this time I was pretty much healed from childbirth and didn't mind getting in the tub in a bathing suit to unwrap the plaster.  I remember one week I was unwrapping his casts and I noticed blood on them.  I immediately started checking everywhere to see where he could possibly be bleeding. I was freaking out that he was hurt somewhere. It took me a couple of minutes to notice the cut on my finger and realize it was MY blood! The plaster could occasionally be sharp as I unwrapped it and I cut my fingers a few times over the weeks.  Of course being in the water made it look much worse than it really was.  I actually grew to really enjoy those nights of getting his casts off.  I always tried to stop unwrapping them once I got to his foot so I could slip that part off and keep it.  I have a whole bag full of little Oliver foot casts and cast wrappings.

This was the second night I soaked his casts off.  He had been in casts for two weeks at this point. It never ceased to amaze me the difference in his feet and how quickly it happened.

On our way for more casts again.  The better his feet looked the more I hated having to cover them in casts.  They began to look so normal!

Its hard to remember each casting appointment because they were just a way of life for awhile.  I do remember one particularly great appointment for him.  The nurse was so happy when she saw his feet before the doctor came in.  No one usually said too much about his feet, just that they were looking good.  This time you could tell Nurse Deb was really surprised and excited with how great they looked.  When she came back in with Dr. Cummiskey it was like she couldn't wait for him to see them.  He kept saying how great they looked, and it made my heart soar to know that all we were going through was worth it.  During that casting, Oliver was crying, and I just kept whispering, "Its ok, baby, its ok" and Dr. Cummiskey said, "Oh Oliver, its beyond ok! Your feet are looking amazing! Seriously, we rarely see this much progress this fast.  I am just in shock."  At that appointment, we thought we might only need one more set of casts.  I was SO excited.  It turned out he needed two more sets, and even though it was disappointing at the time, I am now able to look back and really see how awesome his progress was.

After three weeks of casts. I remember worrying that his feet were "over"corrected this time, but it was all just part of the process.  The next morning Dr. Cummiskey was thrilled with how they looked.

I've always loved this picture of little Oliver.  This was a very good appointment for him!

October 30, 2008. Oliver was just over two months old, and we were thrilled at that day's appointment to learn that he didn't need any more casts. His last two sets of casts had stayed on for two weeks each. The doctor hadn't told us for sure when he would be done, and we had gone in prepared for another set.  Dr. Cummiskey was so pleased that he decided Oliver was done with casts and would not need a tenotomy.  That was the biggest relief.  Most children (I have read as many as 80%, sometimes more) need this surgery once they are done with castings.  We had prepared ourselves for the possibility of it.  Basically they cut the baby's achilles tendon to release the foot, then cast it again while it heals.  I was so, so relieved that Oliver didn't need it.  Dr. Cummiskey commented again with how great Oliver's feet had responded to treatment.  All I could say was, "God is good."

October 29, 2008.  I didn't realize it at the time, but I had just soaked off his last set of casts! We were expecting one more set and got exciting news the next morning.

Such an exciting day! Oliver was *DONE* with casts earlier than expected!! It was the day before Halloween, so I celebrated by putting some adorable pumpkin socks on him.

Oliver had several days in between casts and braces.  Again, this is not something we will experience with Max as the doctors I have spoken to want as little time between casts and the brace.  Also, the brace that Oliver went into (KAFO...knee, ankle, foot, orthodics) is a brace that I have not seen used again.  Of all the clubfoot parents I have talked to and the doctors I have spoken with lately, they all use a bar and boots system.  I'll talk more about Oliver's braces in another post.

It was hard to believe we were done with casts.  It seemed like we had just started, and we were so used to going to these appointments.  I was so proud of our little boy, and so so relieved to be done with this part of his treatment.

One incredible thing was how quickly Oliver met milestones even with his casts on.  We were at his one month well check-up, and the doctor put him on his belly to see how he did.  The doctor told us that he might experience some delays because of the casts, and to not be concerned if it took him a bit longer to do things like roll over.  Right after he said this, Oliver rolled from his belly to his back! We had to laugh, and at first thought it might have just been an "accident."  But no.  Oliver proved us all wrong, and at just one month old was rolling over like crazy.  Especially for first time moms, it can become an obsession if your baby isn't meeting milestones right on time.  I was so glad to have one less thing to be worried about at that time.