Thursday, July 18, 2013

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.








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