Friday, May 25, 2012

A Few of Our Favorite Things

When Eric and I found out that Eli definitely was going to be born with clubfoot one of our very next questions was, what are we going to need for him? After what seemed like endless searching on the internet, there weren't a lot of answers about what worked and what didn't work for a baby with club foot. It is through our own trial and error that we have come up with this "list" of our favorite things.

A few of our favorite things

1. The Fisher Price Rock n' Play: This thing was amazing!  It didn't take Eric and I long to see that the weight of Eli's casts were making it nearly impossible to lay flat in his bassinet. The casts looked like they were pulling his sweet little legs out of the socket. So doing what Mom's do best, I started to brainstorm and came across this sweet little invention at Target. It may have been the best $50 we spent on anything for Eli to date. Once we put him in the rock and play, he was much happier, slept better, and the way it sinks down helped hold his casts up. Love this thing!
Snuggled comfortably in his Rock N' Play
before the Rock n' Play

2. The Fisher Price Jumperoo: Eli loves this thing as I suspect most kids do. Why we love this though, is because by jumping Eli is building his leg muscles that had gotten weak during all those weeks of casting. Eli will jump in his jumperoo for hours if we let him.

3. PBK Chamois Sheets: These are the softest sheets ever!  Eric and I are convinced our little man is a man of comfort and leisure because he just won't go to bed unless these are on his bed. With the discomfort of his braces and casts, why not indulge him with some luxury :o)?!

4. Baby Einstein Neptune Ocean Adventure Gym: Eli loves this gym. We love this gym because of the pillow that comes with it!  We can strategically place the whale pillow under Eli's braces, hook it to the mat, and wallah, our hardwood floors are saved!

5. Carters Snap Up Cotton Sleep and Play: This PJ's are great!  We recommend the snapping PJ's vs the footless zipper PJ's for one reason: they are easier. Zipper footed PJ's are attached at the ankles which make it really difficult to do a diaper change in the middle of the night with braces on. The snap up PJ's easily snap around casts or braces and make diaper changes in the middle of the night a breeze :o)!

Zipper PJ's
Snap PJ's
 6. Nightgowns: As much as we hated for Eli (as a boy) to have to wear nightgowns, this was by far the best thing for him to sleep in while he was in casts. Eli hated the sleep sacks. They were just too confining for him. Since our son grew at an exponential rate, it was really hard to find nightgowns for him once he got out of the 0-3 month size. My grandma was able to find a few nightgowns for Eli at garage sales. And we aren't proud. We took everything we could get and everything we could find!

7. Chicco Stroller and High Chair: We love these things mostly because they are so darn easy to use!  When you are juggling a baby with casts and braces, the last thing I want to be doing is messing with difficult to use equipment. It seems this company has thought of everything!  The ease of use makes the higher price tag worth it!

  So, that's our list. What are some of your favorite things for your baby?

Tuesday, May 22, 2012

Operation: Give Him the Boot!

Growing up, like all little boys, I had a fascination with magic.  I even taught myself a few card tricks.  Apparently, this is an interest that Eli and I share.  Because we’re convinced that Eli is well on his way to a career in magic.  We’ve never seen anyone get out of something as fast as he can.  In fact, he can pull off his Dobbs Brace within 15 seconds when he really wants to.  No pair of handcuffs would hold this kid.

Of course this makes bedtime a challenge.  We can’t simply let Eli fall asleep on his own or “cry it out” as some people suggest.  Because when he’s awake, he’s working on taking his Dobbs Brace off.  For the first 5 months of his life a well-timed bottle was all he needed to fall asleep.  Now that he’s hit his 6-month “birthday,” the bottle has lost it’s power.  It’s as if Superman suddenly wasn’t affected by kryptonite.

This makes for many long nights as we try to get him down.

Sometimes though, it looks like Eli’s gone to sleep when he’s really been playing possum.  (A favorite game of his.)  When we check back on him later, we see something like this (although at this point we had managed to get his right shoe back on, his right foot never moved):

Eli comfortably sleeping: Perhaps this is why he doesn't like to wear his brace

So last night we implemented Operation: Give Him the Boot!

It was a risky move.  But we decided that instead of spending the next 4 hours fighting with him to go back asleep we’d let him fall asleep and then put on both his sock and his brace.

I can’t stress enough how difficult it was.  Easily on par with landing a man on the moon.  He’s a light sleeper.  Who hates wearing his braces anyway.  After multiple attempts and about 20 minutes of effort, we managed to successfully put on his sock, un-velcro his shoes, and then get the shoes back on.

We plan to enter an international Jenga competition later this month.

Thursday, May 10, 2012

Guest Post: Where Things Stand Now

My son Jamie has unilateral (right foot only) club foot.  You have read some of our struggles both recent and from months past through this journey of club foot treatments.  So where do things stand now?  I thought I would show with pictures how his foot is correcting after nearly 16 months of treatment.

You can see the extra skin on his right foot on the first picture, which my doctor assures me will go away as his foot continues to grow.  He is in size 6 wide shoes (he has big feet!) and our doctor believes he will remain flat footed like his father.

Thankfully, to this point Jamie's foot has corrected well and our doctor has been pleased with his progress.  He is wearing the brace 12 hours at night consistently, and we don't know for how much longer.  Our doctor seems to be very wary of giving false hope or promises and therefore is avoiding the question.  We have our next checkup at the end of this month since we go every 3 months, so I'll keep you posted.  You can see in the above picture the red marks that are always on the top of both of his feet from wearing the shoes.  These do not ever seem to bother him and have been there since almost the beginning of wearing the bar.

One of the worst parts of the treatment process was the tenotomy - such a simple procedure, but so hard for the parents to handle!  The picture above shows the scar on his right heel from the surgery, which has been about that lightly visible since he initially healed.

The best part of the treatment is the freedom that it has given Jamie - he is a happy, goofy, loving child during the day and not too unhappy at night either.  I actually always assumed that he couldn't really walk in his full get up and the only reason he was able to stand in his shoes and Dobbs bar was because he was standing on the soft surface of the crib.  To my surprise, it turns out he can walk on solid ground too!  Maybe as we start to look at potty training in the next year it won't be as hopeless as we thought! 

Speaking of hope, it is my hope that seeing these pictures will encourage any of you currently in this club foot journey with your child.  We  are maybe a year ahead of some of you - which in baby development terms is a drastic difference, but believe me, I remember in excruciating detail the beginning of this walk.  So see my baby's scar, red marks, extra skin, and big smile, and look forward to the day that is coming when you will be there too.

This is a guest post from Victoria, who has been a bloggin' machine for Faith Feet & Love.  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, May 8, 2012

A Mothers Guilt

There aren't many things that make a mother feel more guilty than when you are told your child is going to be born with a birth defect or some other medical issue. What is even harder is admitting to family and friends that your unborn baby has issues.

For me, there was an incredible amount of shame that came with Eli's diagnosis. I wanted to cry (and often times did) after I was finally able to tell people about Eli's health issues because that person would follow up with the dreaded question, "What causes that to happen?" Their questions somehow implied it was something I did in my pregnancy to make this happen to my child. That I didn't do what I was supposed to prenatally to give my child the best shot at a healthy life.

I thought I did everything possible to insure I had the perfect pregnancy. I stopped taking the medication I was prescribed for my epilepsy because of the risk of birth defects that are associated with it. I went to my first prenatal appointment 2 days after I found out I was pregnant (I was THAT excited!) and just 5 weeks along. I took my prenatal vitamins, I followed a very strict pregnancy diet, and gave up my Starbucks habit.

Spiritually, I thought I had crossed every T and dotted every I. Just one year earlier, I went on a 10 day mission trip to Mamelodi, South Africa. An experience that dramatically changed the course of our families spending, the way we lived out our families legacy, and my life forever.

I was part of not one but two small groups. My husband and I committed a substantial amount of money to our church's campaign to help fund rescuing girls from sex slavery, helping our friends in South Africa get the healthcare they need, and help our neighbors in Cincinnati get out of poverty. Both my husband and I spend time volunteering and pouring into others.

Surely after all of this God owed us a perfect baby and a perfect pregnancy right?

Truth is, God doesn't work on a barter system. If we do X God doesn't guarantee Y. We live in a messed up broken world.

I have had to learn and accept that God's grace is enough.

It's by His grace that Eli "only" has clubfoot. It's by His grace that Eli was healed from the potentially life threatening kidney problems he was diagnosed with. It's by His grace that we were able to have the best doctor in the delivery room, at the perfect time, to save Eli from dying during delivery.

We were given the perfect baby. He was just wrapped in a different package.

It wasn't until recently that I was able to admit to my husband the guilt I carried throughout our pregnancy and the embarrassment I felt for having a baby with a birth defect.

I was even reluctant to post pictures of Eli on facebook that showed his feet for fear of judgement from others.

I had some deep rooted guilt/shame/fear going on.

Once I accepted that we live in a broken and fallen world and that God really does love Eli more than I could possibly ever imagine, I was able to let go of some of that guilt.

I'd be lying if I said that I still don't feel those twinges of guilt each time we have to put Eli's braces on and he cries. When those moments arise I have to remind myself, as hard as it is for me to imagine, that God loves me and Eli far more than I ever could and that He is using this for something amazing.

And for our family, that is enough.

Tuesday, May 1, 2012

Bracing for Clubfeet

Nothing so far prepares you for The Bar.  And sadly we’re not talking about the one that serves alcohol.

At some point your child will be given shoes and a leg bar.  The most common type of bar is called the Mitchell bar.  It’s essentially one metal rod that connects the two feet together.  It’s important because it keeps the feet situated and secure. 

Yet at the same time, it’s the most terrible thing you will experience.  Why?  Because your baby, even with the weight of the casts, likes to kick his legs independently of one another.  Our son calms himself by kicking his legs.  When we attached a heavy bar between them, he was not only unable to move his feet independently, he was unable to move them at all.

Now some babies respond well to this.  We’ve been told that some kids even like wearing their shoes.  For Eli, he despised every minute of it.  In fact, he actually stopped eating for the first 2 days we had his brace on.  He lost about a pound of body weight. 

What I wished we had been told is just how hard it is as a parent to adjust to the bar.  Especially when your kid is nearly inconsolable.

So here’s some tips to get you through this if you’re experience is like ours:

1.  Stay Calm.  Trust me, I know how hard this is.  I’m telling you this with only sleeping 20 hours in 5 days.  But your baby knows when you’re upset, and it doesn’t help him any to get worked up.

2.  Check his feet.  We found that our shoes weren’t sitting right on his feet.  And while the brace shop didn’t want to hear our complaints, we forced them to listen, and got it resolved.  Hopefully you’ll work with a more cooperative / understanding brace shop, but make sure his feet are fitting properly in his shoes.  (Sadly you really won’t know what “properly” is until you’ve tried to put his shoes on a few times at home.)

3.  Be an Advocate.  We may have over-reacted at times to Eli’s response to his shoes.  But you know what?  It’s better to over-react than not react.  We’ll gladly look like fools if it means Eli’s being protected! 

4.  It does get better.  I hate it when people tell me this, because it’s not what you want to hear.  But it does get better. 

5.  Trust your instincts.  If everything seems wrong, maybe it is.  Go be an advocate and call the doctor.  Force them to see your baby.  No one can diagnose over a phone, so trust your instincts.

The good news (for us) is that we switched out of the Mitchell Bar into the Dobbs brace, and that made a world of difference.  But all of these things were still important for Eli as we've still had complications with his braces.