Thursday, March 29, 2012

Confessions of non-compliance

They always say that one of the main reasons for recurrence of club foot is non-compliance on the parents' part. In the beginning I always assumed I would be the exception. After all, I am the one who always follows the rules, goes to great lengths to do what's right, and would never dream of rocking the boat. But it seemed a lot easier when the doctor was explaining the treatment process of club foot to us a year ago. Or maybe I just wasn't listening.

It starts out so simply - the baby has a cold, so let's "give him the night off" from wearing the shoes and/or brace. Then it's because he learned to roll over, or crawl, or stand on his own. Or maybe there's a new babysitter, or the in-laws are visiting, or your husband just forgets. But eventually the exception has become the norm, and you are dreading the day you know has to come around sooner or later where you make the baby wear the brace. So you keep finding more excuses - daylight savings time, teething, you name it!

I can say all of this because I have spent months (yes, I admit it, months!) using all of these excuses. But no longer. After being recently convicted about my procrastination, I decided one day that I was going to put Jamie to bed with his Dobbs bar on, not just with the shoes like we had been doing. It didn't go well - I think he lasted until about 10:30 pm. But then the next night he slept until midnight, and the night after that was until 3:30 am. And then one morning I realized that my little angel slept all night with the brace on!

I am proud to say that my resilient baby is sleeping through the night in his full rig and is doing great. As you can see from the pictures, he still moves all around his crib. In the end, I think it was probably me who was scared of the change, not him. After all, babies crave order and routine. Eventually Jamie will know that it's time for night night when we put on his special shoes. As it is, he reaches for his brace and tries to attach it to his shoes while I'm strapping them to his feet. He doesn't love it. He probably never will! But he has accepted it. And that means that now all of us are on board for the next two (plus?) years so that his "special night time shoes" are the only remnants of his club foot treatments. We are determined not to let our non-compliance be the reason that his clubfoot comes back. So I hope my confessions help you to gather the courage to do it, stick with it, whatever your situation is. In the long run, it will seem like nothing!

This is a guest post from Victoria, whose baby is currently not wearing the shoes again due to illness. But she promises they'll get back there!  She's previously written an Our Story feature as well as sharing some advice about the Importance of Humor when dealing with clubfoot.  We want to thank Victoria for writing such an awesome guest post!  If you'd like to write a guest post, please contact us for more details.

Tuesday, March 27, 2012

Divorce is NOT an Option

When my wife and I got married, we decided up front that divorce was simply not an option.  Now to some of you this may seem strange. No one goes into a marriage thinking divorce will happen shortly.  Not even infamous celebrity marriages that last weeks.  We’re all optimists at heart when it comes to relationships.
But it seems that in the back of many people’s minds, that at some point, divorce might be acceptable if… (and of course that “if” can cover a lot of ground.)
If that’s you, or if you’ve ever been divorced, we’re not here to judge you.  In fact, this has nothing to do with you. It has everything to do with a strong marriage.
Having a child with any kind of medical condition is a strain on marriage.  Heck, who are we kidding?!  Having any kid is a strain on marriage!
But when we decided that divorce was not an option it meant several things:
1. We removed the word “divorce” from our vocabulary.  We don’t joke about it.  We don’t threaten it.  And we most certainly don’t think about it.  We treat it a lot like Kevin Costner’s movie Water World.
2. I simply can’t do the things I used to.   I have to remove myself from situations that may tempt me. Is this because I think I might fail?   No.  Is it because my wife isn’t good enough or I’m not strong enough?   No.  It’s because I don’t want to put myself into a situation where one bad choice ruins my life, my wife’s life, and my kids lives.   It’s not worth the risk.
3. I have to sacrifice like Jesus. In a practical sense that means giving up my obsession of football.  Football used to influence my mood for weeks at a time.   If the Steelers were winning I was in a great mood. If they were losing, I was devastated and depressed.  When I started dating my wife, she would fear a Steelers loss because she knew I’d be in a bad mood.   This is not a way to show someone you love them!   So I had to give up watching Steelers games, not all of them, just some of them, so that our marriage remained the central thing in our lives.  Although I believe if she hadn’t been raised as a Bengals fan, this wouldn’t really have been an issue.  Just sayin’
4. God’s the boss.  It’s plain and simple. He’s the one whom we follow.  He’s the one who sets the agenda. And if Heather and I disagree, he’s the tiebreaker.  So whomever is closest to doing what God wants (another post) they “win.”
5. Whoever is the most mature, moves first.   This is the one I hate.  Because it means the moment I start thinking things like, “why can’t she get her act together?!  She’s so immature!”  It means it’s time for me to suck it up and move.   If I’m judging her behavior then it means I think I’m superior.  And if I’m superior, then I’m the one who has to move first.  There’s nothing like a dose of humility to end an argument, especially when you know you’re the one who has to take the hit.
There are likely other ways that we make sure divorce is not an option.  But these are the top 5 for us.
How about you?  How do you keep your marriage strong through the trials of a sick kid?  (Or a healthy kid.  Or a kid who’s potty training.  Or well, you get the idea.)
image by Kables

Thursday, March 22, 2012

Our Story- Kate and Brenna

Day after she was born
My husband and I thought we were done with having children after having two beautiful, healthy babies, our son Alex and our daughter Cecelia. When Cece was 18 months old I found out I was pregnant again, and to be honest I was upset. My little girl was still very much a baby in my eyes, my son had just started to really come into his own as far as being a big brother, we were just getting our routine down as parents of two kids. Would I be able to handle three kids under 5? Would I be patient enough, would I be able to give each the attention and love that they deserved, would we be able to afford it, how would we make it all work?

My first trimester was miserable. I was sick, tired, guilt-ridden about not being able to devote the kind of attention to my babies that I felt they needed, I was worried and sad. When I started feeling better it was as though the clouds began to lift, and I began to feel hopeful and excited about adding to our family. We could do this. I began to think of baby names, and plan the girls room.

First set of casts
Since we decided to forgo any special testing for genetic abnormalities, as we had with our other babies, my obstetrician had me go for a level II ultrasound for the 18 week anatomy scan just to get a good look at the baby. During the test the technician became quiet, the chit-chat slowed, and I knew there was something up. When she was done she asked us to wait to speak to the neonatologist, and she left the room. The wait was a long one. When the doctor came in, he sat next to me and said 'we saw a couple of things that we need to talk about.' He told us that the baby had two cysts on her brain, which are fairly common and typically disappear before birth and do not pose a threat developmentally, and that she had bilateral club feet. Together, he told us, they are two markers for something called Trisomy 18. When I heard those words, everything inside deflated. I felt as though this was some sort of karma for not being immediately happy about my pregnancy, I felt as though it was my fault. What I didn't feel, however, was dread about the club feet diagnosis. When you are presented with two options, one of which is a terrible condition that does not support life, and the other is a very treatable condition that will require some adjustment of how you imagine your baby's immediate future, the impact of the latter seems so preferable that you pray for a club feet diagnosis, and only that.

After third set of casts
We opted against having an amniocentesis to determine the presence of T18 or not and decided to wait it out. It was a very long wait. Bedrest for other complications, a potential problem with the baby's kidneys that resolved itself literally a week before I gave birth, continued guilt over not being able to do things with my kids that we love to do in the summer, twice-weekly non stress tests and biophysical profiles, and our baby finally arrived. I cannot explain to you the relief I felt when I saw those crooked little feet and a perfectly healthy baby girl. It was amazing.

Brenna had her first casts put on when she was 10 days old, and had weekly cast changes for the next 8 weeks. She had a tenotomy done on both legs in January at Children's Hospital, and she has been in the Ponsetti brace for the last 3 months.

The casts... Well, they weren't a whole lot of fun. She didn't seem to care about them much once they were on (she did scream like a banshee during every. single. cast change.) but they made things a little more tricky as far as dressing her, not getting poop on them, snuggling her, she kicked out of a pair over Thanksgiving weekend the little monkey, but by and large they were okay.

The surgery was horrible for us as parents. It was done in the hospital under a local anesthetic and was very quick, but man. Even though it was a minor surgery seeing your baby being carried away by the nurse into the OR is no fun. The rest of that day was awful for her, and again for us, and then she bounced back very quickly the day after.

The brace has been my least favorite (for lack of a better word) part of this whole experience. My girl loves to kick her chubby little legs, and we have had a lot of issues with her kicking out of her boots, red spots on her heels, and lack of sleep. On the upside, she is much easier to hold and dress in the brace than she was in the casts. Her orthopedic doctor just told us last week we could go down to 18 hours a day, and I immediately put her in a footed outfit and enjoyed those 6 hours without the brace or boots on. (Funny what you took for granted before, isn't it?)

To any parent who has been told their baby has club feet, I would say this: stay positive. Get through one issue and then deal with the next, don't worry about all of the steps right away. Be thankful that your baby is healthy, focus on that. This is a big deal, but it is treatable. Do your research, know your options, educate yourself, be your baby's advocate. And stock up on onsies, because getting pants over those casts is a pain in the neck.

Thanks to Kate for contributing to the Our Story feature for Faith Feet & Love. If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details.

Tuesday, March 20, 2012

The Benefits of the Dobbs Brace

I woke up tired this morning. Exhausted really. And that’s when it hit me: this is the first time I’ve truly been exhausted since Eli settled into his new Dobbs brace. As some of you may recall, when we tried the Mitchell brace for clubfoot, we were up every 45 minutes with him. It was brutal. And the word “brutal” doesn’t do it justice.

But within a week of getting the Dobbs brace, our lives improved unimaginably. We were able to sleep. Eli started sleeping through the night (as of this weekend he even slept 13 hours one night!) It’s made a big difference in our marriage, in our work, and frankly in our sanity!

So here are 3 things we’ve learned since Eli moved into the Dobbs brace.

1. Fight for the Brace. We hear it’s more expensive. Although we have yet to get the bill from the insurance company. Something tells me they haven’t forgotten about us! But I will say, no matter how much it cost, for us, it is worth it. I’ve been in training events where we are supposed to answer “how much is ______ worth.” I now know exactly how much a good night of sleep is worth! So if your doctor is recommending the Mitchell bar, push back and try and land the Dobbs brace. (Because it’s new “technology” most doctors aren’t yet comfortable prescribing it.)

2. Double up on socks. Eli’s feet sweat a lot. We need two pairs of socks to help keep that in check. But the second pair of socks really help prevent Eli from getting blisters / sores from the brace.

3. Use a colored “outer” sock. Because we use two socks we like to put a second colored sock on the outside. Why? Because it lets us see if his heel is “down” in the brace. Something that’s difficult to do through the small opaque plastic “window” they use in our braces. As they say in the Ghostbusters, “if the light is green, the foot is down.” Or something.

We’ve learned other tips in the last month, but these are 3 big ones. If you have a tip feel free to let us know in the comments section!

Thursday, March 15, 2012

The Importance of Humor

When you and your family are going through something like club foot treatments, it can be difficult to see past the bad things. The hard times when the baby refuses to eat or sleep because of a new cast. The looks that strangers may give you, wondering what on earth you did to your tiny baby that requires a full leg cast. Sometimes the only way to stay sane is to laugh.

Our friends helped with this by making our son's first cast a blank palate that was begging for decoration. They drew stars and hearts and wrote, "If found please contact: Mommy." As silly as it is, it helped me smile every time I looked at his cast that first week instead of crying.

Now, my husband will tell you that I'm not the funny one in the marriage. I have to admit that in this case it was absolutely true - I was always so worried about the baby's toes or the next doctor's appointment that sometimes I found it difficult to find joy in our situation. But my husband wasn't fazed by my fears or random people's looks. He told me that the next time someone asked, "Oh, what happened to your poor baby's leg?!?!" to reply, "Trampoline accident." I hated answering those inevitable questions in the elevator. I usually ended up not going into detail past "we are correcting his foot that was turned in at birth." I had trouble admitting to strangers that my child had club foot and we were doing our best to get it treated.

So the next time the old lady asked, he replied with a straight face that "we had a trampoline accident at home. Next time we'll use a net to catch him." The unwary victim sort of chuckled after a couple of awkward seconds. But my heart was lightened by the humor that my husband brought to an uncomfortable situation. I never had the courage to try his line. However, it did make me giggle, and suddenly the terrible moment was past and I still had a smile on my face.

So I encourage you to find the humor, and even joy in all things. It makes every situation easier to bear.

Thanks to Victoria for contributing to the Our Story feature for Faith Feet & Love.   If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details. 

Tuesday, March 13, 2012

The Long Haul

Yesterday was a big day.  It was the first trip back to the Orthopedist since Eli had his surgery.  To say we were nervous was an understatement.
As a parent lot’s of questions run through your mind: did we do it right?  Did the brace shop mess up his prescription?  (A real possibility in our case).  Are we attentive enough when he’s awake?  Should we check his braces when he’s asleep?  Is it worth waking him up to fix his braces?

Of course, our answers would have to wait.  Because after rushing to the hospital, we proceeded to wait almost an hour past our appointment.  Some days just seem to be like that!
The time wasn’t a total waste, however, because I began to realize just how much Eli has grown up.  When we first started taking him to Children’s Hospital, Eli was a week old.  We lived in fear that he would wake up and immediately start screaming.  (He only did two things back then: either slept or screamed.)  We did everything we could to keep him asleep, and an hour wait would have been an eternity with a screaming baby.
This time, though, he arrived at the hospital awake.  And he sat in his stroller calmly.  He watched people walk by.  Looked at the lights.  And drooled.  A lot.  But he was clam.  (Did I mention the drool?)

One of the issues with club foot is that it makes you live so day-to-day.  It’s hard to think ahead (let alone plan ahead) when your baby is screaming and you haven’t slept.  Just getting over the next hill seems like a miracle in and of itself.  That’s why Heather and I have lived for each milestone.  Thinking, we just have to make it to the next one.  Sometimes it’s the only thing that keeps you going.

Of course there are drawbacks to that approach.  Namely, you forget what the total journey looks like. 

But back to the good news - Eli's feet looked great according to the doctor.  They told us he was doing well, and we even found out a date for switching his braces to 12 hours / day (April 27th.) 

What shocked us though, was when the doctor said that we’ll need to keep coming back for visits through college.  Granted it will be every 2 years at that point, but I wasn’t really prepared to think of that.  The date in my mind has always been the day the braces come off.  But that’s not so.  With clubfoot you need to continue to monitor it, just to make sure there aren’t any future problems.
People say clubfoot is “no big deal.”  Of course these are people who don’t have a kid with clubfoot.  And of course compared to many of the terrible illnesses and conditions out there, it isn’t as “big of a deal.”  But it’s still a big deal.  And it’s something that will follow Eli (and us) through the rest of our lives.
But that’s okay.  We’re prepared for the long haul.  We’ve come this far, we know we’ll go the distance. 

image provided by flickr user The Marmot

Thursday, March 8, 2012

Comparing Yourself with Others

Growing up I loved to compete with my friends. In fact, we created a "holiday" called All Sports Day, where we got up at 5:00am to play golf, then proceeded to play football, tennis, basketball, and badminton (along with a handful of other "sports") until it got dark. Then we'd play "Ghost in the Graveyard" and Poker until 2 or 3 in the morning.

We kept score for everything. And the competition between my friends and I was fierce.

This was all in fun, but competition is one of those interesting parts of human nature. At our core is an innate desire to compare and compete with one another. Sometimes this is a good thing. Competition can bring out the best in us as we try to prove that our ideas, our teams, our companies are worth The Prize (whatever that prize happens to be.)

The problem is, we carry this “healthy” competition into comparing our lives with the lives of others.  So we look at a rich friend and feel envious or jealous.  We might look at another person’s wife, husband, car, kids, house, TV and think, “Wow. I wish I had that.”

But we also compare ourselves when it comes to health problems.

We just do this in the opposite direction.  We have a tendency to look down on people who aren’t struggling as much as we are, our kids are, or our families.  There were moments with Eli when someone well meaning said, “well this is for his good.”  Or, “God doesn’t give us anything more than we can handle.”

Those may both be 100% true.  And I was grateful to have someone who was trying to encourage me, because I needed it!  But there was a part of me that was angry.  A part of me that thought, “What the Hell do you know?!  You’re kid came out fine!  You know nothing of our struggles!”

It’s shocking how fast we can put on the cloak of arrogance and judgment. 

While I’ve learned so much from dealing with Eli’s medical conditions, one of the biggest lessons has been perspective.  No matter how bad things were with Eli at their darkest, it could always have been worse.  And it still can be.  Just because we made it through clubfeet, Down syndrome, and kidney failure doesn’t mean we’ll make it through cancer, accidents, or acne.

God has really opened up my eyes so that I’ve seen just how bad things are for some people.  This perspective makes work stress seem like a joke.   It makes getting stuck in traffic seem like a joy!  It makes life more fun, because every moment of every day, I have something to celebrate.

Don’t misunderstand. I’m still fallen just as you are.   I’m still prone to arrogance, jealousy, and a bad temper. Especially at 3 am when Eli won’t sleep.  So I’m not always Mr. Happy Go Lucky.  But I’m not so quick to judge others who haven’t “suffered as much” as I have.  Because it could be worse, and to some, I know nothing of suffering.

Now who want's to play some badminton?

image provided by flickr user dee'lite

Tuesday, March 6, 2012

Our story - Victoria and Baby James

My name is Victoria, and I am thrilled to be contributing some of my own experiences to Faith, Feet, and Love. Here is our story, also known as the story of Jamie and Dr. Poopy Pants.

James was born on January 8, 2011 after my water broke with a gush and 18 hours of pitocin augmented labor. He came literally flying out after 30 minutes of pushing and they plopped him on my belly. I asked the room, "What is that?" as I was not expecting a baby to appear so soon! Jamie was the most incredibly beautiful thing I had ever seen. The baby nurse made a comment after cleaning him up and administering the Apgar test "not to worry, that's not club foot." I didn't have any idea what she was talking about. In my eyes my new son was perfect in every way and his right foot was just a little turned in.

Fast forward to the first pediatrician appointment - we were undergoing treatment for jaundice and our doctor mentioned that his right foot was "more turned in than I like to see," but wasn't club foot. I actually wasn't even surprised his foot was a little turned in. After all, I had complained for months about the foot that was living in my rib cage!

At two weeks of life we had our check up with our pediatrician. Everything was proceeding well - Jamie's jaundice was under control, he was nursing well and gaining weight. However, his right foot was still not as flexible as our doctor had hoped. He suggested that we visit an orthopedist to rule out club foot and to get ideas on treatment to correct the turnout. We almost didn't call since it seemed like he was probably going to be fine, but we had to see.

We had a referral to one of the top pediatric orthopedists in our area. He took one look at our son's foot, and without an x-ray, declared he had mild club foot and needed manipulation and casting. We had only done the most scant research before our appointment, but had an idea of what the treatments would entail. What we didn't realize was how much a newborn would hate being held down while having his entire leg casted. Or how heart wrenching the decision to pursue treatment would be. The last thing we expected was to leave the doctor's office with Jamie's right leg in a cast.

Jamie managed to continue to grow and amaze us with his sweet personality even through these difficult times. And I haven't even gone into the colic, GERD, and food allergies! I was zealous about checking his little toes for color and warmth at the bottom of his cast. And I confess there were two times (over weekends, of course! when the doctor's office is closed) that the baby wouldn't stop screaming, his toes just didn't seem right, and we would take the cast off. I have heard it said that it is more difficult for the parents to go through with the treatments than the child. In some ways I think that is true... as my boy started lifting his head, turning over, and even doing the army man crawl, he seemed accustomed to not being able to bend his right leg. He didn't like it, of course, but it had always been that way. But for us, it was much worse because I was tempted to give him more time off, wanting him to know what it was like to have "normal" movement. We were always wondering if we were doing the right thing - if it's really so mild, why do we have to go through this seemingly barbaric treatment?

As weeks followed weeks, things with Dr. Poopy Pants started to come to a head. Every week we would ask how he was progressing, how many more weeks of casting he expected we would need, etc. and every time never received a straight answer. Even though we could see visible improvement, we still ended up going from "probably won't need the tenotomy" to "may need to do the procedure" to "we need to schedule the procedure next week." My husband and I were afraid that by not doing it we would require weeks more of casting and frustration for Jamie. So we chose to have the procedure done in the orthopedist's office, with a local anesthetic rather than the full out anesthesia at the hospital. Hearing my child scream in the other room was probably one of the most heart wrenching things I've ever had to sit through. But the thought of only three weeks and then no more cast kept us going.

It was around this time that we were discussing options for the brace, where our doctor informed us that we would be getting the Ponseti AFO shoes and foot abduction brace. After my husband did some research, we lobbied to have the Dobbs bar instead. It seemed like the ability to move the legs more with the articulating bar just couldn't be beat. Our doctor doesn't really do the Dobbs bar - apparently we are one of the few on the West Coast to use that system. Happily we were able to convince him and our insurance approved it.

When the casts come off, they look (and smell) rather terrible. That was especially true after the three weeks... I was horrified to see the state of my poor baby's leg, and not much relieved when I saw the contraption they wanted to put him in!

But honestly, the freedom the brace offered was so much better than the cast. Jamie finally started to enjoy tummy time instead of crying the whole time. He started wiggling and kicking and looking at the world... and we were all much happier. He still enjoys informing us that he is awake by slamming his metal legs into my nice wooden crib. :) It wasn't all fun and games to baby or parents, though. I was very upset to see marks on his precious skin from the straps on the shoes, which moleskin, various types of socks, and even the additional rubber saddle on the shoe never completely erased. It was hard to believe how tight I had to pull the straps in order for his heel to stay correctly down and so that he wouldn't get out of his shoes. Jamie was always so proud of himself when he would break out of his shoes - he usually got one off by straightening one leg out straight and pulling up with the other leg. He was such a little stinker!

Jamie began walking at 11 months and is now running all over the place causing mischief. He sleeps 11-12 hours a night in his brace, although not always peacefully when he gets stuck in the crib rails! I was hoping that I could say at this point, almost 14 months old, that it was easy, perfect, or "normal." Well, since Jamie is our only child I don't know about normal, and I suspect easy and perfect would always be elusive. But what I can say is that everything we have done we did for him. For his future. I want him to have the chance to be a world famous athlete, or whatever his heart desires, without having to worry about a physical problem holding him back. And as his parents, we can say that we are doing our best to give Jamie that chance. And that, and today's breakthrough of actually calling me "momma," make every tear worth it.

Thanks to Victoria for contributing to the Our Story feature for Faith Feet & Love. If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details.

Thursday, March 1, 2012

And... We're Rollin'

Boy oh boy!

Week 15 was an exciting one! Not only did Eli start laughing this week (which is com pletely adorable by the way!), he rolled over for the first time.
The best part? He rolled over for the first time on my husband's birthday! What better present than that?

I happened to have my camera in hand and was able to catch this amazing milestone thanks to the lightning fast speed of my SLR.

You would have though Eli won the Super Bowl with the way his sister, Daddy, and I were clapping and cheering. Although if you look closely at the last picture, you can practically hear Eli thinking, "Oh no! What have I done now!"

He has been a rolling fool ever since!

When we first found out that Eli had clubfoot, I worried he wouldn't hit the developmental milestones that other children hit. That he wouldn't be able to do all the things a typical child could. I worried my husband and I would miss out on the cool things other parents get to see - like watching their baby roll over for the first time, crawling, or take their first steps.

The truth is, that was one of my biggest fears, and one of the hardest things to deal with as a parent.

The reality is, Eli is right on track! Just like the doctors said he would be. Kids with clubfeet might be a little slower to hit developmental milestones but eventually they will get there. And thanks to the Dobbs brace, I think Eli might even be right on track with other kids his age.

Now, if only he could go find himself a job!