The End of An Era: Saying Goodbye to Daily Bracing!

3 years, 3 months, and 2 weeks and 6 days  after we started Eli's treatment for bilateral clubfoot, we are finally DONE with daily brace wear!  For those of you counting at home, that is nearly 9 months earlier than we were originally told our treatment would take!

In the last few weeks it seemed like Eli had been packing away the food. We are talking 2 to 3 breakfasts, a few lunches, and then multiple snacks before and after a full dinner. We knew he was getting ready to hit a huge growth spurt but I'm not sure Eric and I expected such a HUGE growth spurt!  One day his braces fit, the next we couldn't get them on without Eli being in a lot of pain :(

So we ended up letting Eli sleep without his braces that night (because everyone loves sleep in our house :)) I finally called Dr. Mehlman's office the next day and left a message to get a new prescription.

The phone call came in as I was working with a few students in my office. Thinking this was just a call letting me know they sent the prescription for new braces over to JF Rowley (the company who takes care of Eli's braces) I answered. When the nurse said that Dr. Mehlman was happy with Eli's feet if we were happy with Eli's feet and we could discontinue bracing, I started sobbing. Uncontrolled tears soaked my desk.

Just the day before we had been told that our unborn son would be born with clubfoot just like Eli. Emotions were raw and admittedly I was annoyed that we would not be getting a break from clubfoot treatment for another 4 years. Having this 5 month break from treatment, brace fittings, and bracing overnight has been nothing short of a huge boost of wind in my sails. It's like God knew exactly the type of rest we needed so we could prepare to work our butts off to be able to give our all to #3's treatment.

For me, one of the hardest things, when shopping for Eli was the whole pajama issue. When Eli was in casts, the casts were too thick and bulky for any kind of traditional sleep sacks. When Eli was in braces, he always had to wear pajamas without feet. Early on, I remember frequently calling or texting friends in tears, because I couldn't find pajamas that would work with Eli's braces. I would be so envious of parents posting pictures of their kids in adorable footed pajamas, not knowing how luckily they were that they didn't have to order thier kids pj's online or have to travel to three different stores to find something in your son's size. At one point Eli had to sleep in girls nightgowns because we were so desperate :( (Hopefully we haven't caused permanent scares :) )

Naturally the first thing I did after calling my husband was head to the store to buy Eli his very first pair of footed pajamas. (I am fairly certain the people at the store thought I was a crazy hot mess as I am crying at check out, taking pictures of the jammies on the conveyer belt to send to everyone I know :) )

The best part about the entire experience was getting to watch Eli's reaction to the new jammies :)

Eli: "Momma, what are these?!"

Me: "Eli, these are new jammies!"

Eli: "But Momma,there are socks on my pants! I love these Momma!  There are socks on my pants! I love these! Thank you Momma"

And here you have it, the best picture ever, my boy basking in the glow joy of wearing footed jammies for the first time ever with his big sister who, of course, wanted to join in the celebration by wearing some as well. Best. Day. Ever.

Doctors had warned us that Eli might have a hard time transitioning out of nightly brace wear and might go through some sleep issues with his braces but, Eli hasn't turned back. Every night since, he has told us before bed, "I no need to wear my braces Daddy."

After all the other challenges we have faced surrounding his treatment, I guess we got lucky :)

2 Timothy 4:7

I have fought the good fight, I have finished the race, I have kept the faith.

We are back!!

After a really long break from the blog, we have decided to revive it! And with some pretty good reason :) Many of our readers have reached out, for advice, support, and to connect. I've felt a tug at my heart for several months now to get this blog going again, so here we go...

The last week has been one of wonderful highs and the lowest of lows. In November, we were surprised and excited to find out there would be another baby Barrett joining the family :)!  After 3 heartbreaking miscarriages, we were over the moon to make it through the first trimester without a hitch so we announced the pregnancy on our Facebook page the best way we knew how: Super Hero style!

The one lingering fear remaining was the 20 week ultrasound. After such a tough and heartbreaking journey with Eli, we were hoping and praying we would dodge another child with clubfoot. As the date approached I could feel the anxiety and excitement welling up in my chest causing me to break down in tears randomly throughout the day. In my defense, pregnancy hormones were doing me no favors! HA!

Going into our ultrasound last Monday I probably cried no less than 6 times before our 10 am appointment. I played the scene over and over in my mind: The ultrasound tech would put the camera on my belly and the first thing we would see would be perfectly straight feet and capture the perfect shot that I could post all over social media praising God's faithfulness to us. A well deserved gift after 3 years and 5 months of trips to Children's hospital right?! It's always good to tell God what you deserve for your suffering right ;)?!  

Unfortunately that just wasn't the case. The ultrasound tech put the camera on my belly and the first thing we saw (immediately!) was that we were going to have another SON & best buddy for Eli!!!  

It didn't take us long to also realize that we would also be having another son with clubfoot :( The tech would neither confirm or deny what both Eric and I clearly saw on the screen.

At the end of our appointment, the ultrasound tech said those dreaded words, "A doctor will be calling you in a day or two to go over the results." Two days later, we got the call confirming our fear: a left clubfoot and uncertainty  of the right foot being clubbed as it wasn't visable in the ultrasound.

This week has been a heartbreaking and gut wrenching roller-coaster ride . We are teetering on the verge of joy and sadness at any given moment. Neither Eric and I would change a thing about our journey with Eli. Our parenting is better, our marriage is better than either of us ever could have imagined it being, and we have been able to appreciate each milestone Eli has been able to accomplish on a much deeper level. We just wanted to be able to enjoy a typically developing baby's too :)

So, many have asked, how can you help?

1. Celebrate with us. Mourn with us. We are thrilled to have a son and children are such a gift (I'd have 10 if i could :)) but we are also deeply saddened that we will be watching another one of our children suffer through casting, bracing, & therapy. It's ok to just say, "I'm sorry. That's really horrible." Because it is. For us, clubfoot isn't always just clubfoot. For Eli, it was an indicator of a much bigger problem that has resulted in 6 surgeries and 7 specialists that we see on a regular basis. So, even though "we know what we are doing and are experts" we are concerned about what further testing  in a few weeks might reveal.  

2. Pray that our son is healed. Baby Barrett is currently breach and he had himself crammed into a corner of my uterus. Our doctor really wants this guy head down to give those legs a chance to stretch out :)

3. Pray that God sustains us. We are weary.  We are tired of specials visits, surgeries, and trips to Children's. We are emotionally spent. It's hard to imagine starting this all over again and going strong for another 4 years.

Thanks friends for your love and prayers. They mean the world to us <3

Jeremiah 29:11-13

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

A Documentary About Clubfoot: The Footnote Film Project

One of the cool things about running a blog is all of the interesting people you get to meet.  We hear a lot from parents who are going through a similar journey, and experiencing the frustration, fears, and hope that come with a child with clubfoot.

While those conversations are always our favorite, sometimes other cool things happen.  Such as being contacted by The Footnote Film Project - a group of people who are making a documentary about the world wide treatment of clubfoot.

The treatment of clubfoot has come along way in even just the last 20 years.  But much of what is considered "normal" treatment of clubfoot in the United States isn't known / practiced around the world.  (And in some places it's not even treated that way in the United States.)  The Footnote Film Project hopes to help raise the awareness of how the type of treatment impacts the life of someone with clubfoot.

If you're interested in supporting The Footnote Film Project, you can visit their Fundly page for more information. Or watch the trailer below...

Choosing a Orthopedist

You've just been given the heart breaking news that your baby is going to be born with club foot. Now what?

After being unable to see Eli's feet in several ultra sounds, we were finally able to see Eli's crooked little foot. We were so relieved that he actually had feet we didn't mind them being a little crooked :)

Eric and I are both planners so, once our shock and feelings of complete devastation started to subside, I went into Super-Mom mode.

The first thing I did was turn to my friends. I started asking around on Facebook and in my community of friends for names of the best Orthopedic surgeons in the city or surrounding states. It didn't matter to me where they were, all I cared about was if they were they best at giving my child a chance at a normal life. Fortunately, the best of the best, a doctor trained my Dr. Ponseti himself, works at our local Children's hospital. On top of that we live less than 10 miles from Children's.

Once we got a few names, we did a massive amount of research on each doctor.  This helped us decide on who would potentially treat our son. Some people don't do any research, and some do more than we did.  But as I said, we're both planners so this helped us reduce our stress and know what questions we should be asking. 

The next thing I did was call the doctors and asked to set up a consultation.  Don't wait to start calling doctors!  We found out that the best Orthopedists are on wait lists. In fact, we had to let them know almost immediately after our consultation if we would be reserving a spot for Eli's treatment. (And yes, this is stressful!)  Our doctor at the time, for example, was only accepting 6 new patients.

One of the most difficult things (out of hundreds) for me to handle during the consultation was being faced with the reality, that, well, this is real. My son will be born with club foot. There's part of you that denies this emotionally while you wrestle with it intellectually.  However, once you walk into a Ortho Clinic there is no denying the reality of what's about to happen. It is heartbreaking to see all the little kids in casts, wheel chairs, and braces knowing in just a few short months, that will be your kid.  :(   I'm not sure anything could have prepared me for that kind of heartbreak!

Eric and I went into the consultation with a list of questions but hardly needed to ask any of them because, the nurse we met with was amazing, and covered everything and more. The most important thing she told us, was to call the Orthopedist as soon as Eli was born so they could get him an appointment to be casted.

So when Eli arrived, and the news made it to our friends and family, we called Children's.

I will never forget that call.

Marsha, the head nurse for our Orthopedist, answered the phone. She was SO excited Eli had arrived that she shouted to the department while we were on the phone, "One of our babies has been born!  Eli is here!" She was just so elated, and clearly loves her job. That single phone call set the tone for the rest of our experience. It put my heart at ease. I knew Eli would be well cared for and loved like he was their own son.

Looking back Eric and I both believe it is more important than we realized to chose the doctors group you feel most comfortable with. A doctor with great bedside manner, a great group of nurses, and a staff with a compassionate heart. While Eli was in the intensive part of his treatment, we saw these people & spoke with them more often than our family or friends. They have become our biggest advocates and best shoulder to cry on.  They've fought battles with the brace shop we could have never won on our own, helped with the endless insurance claims, and have become like family. Plus, when you are going to be spending the next 18 years in their office, you might as well choose someone you like & get along with right?!

In the end I'm not sure there is one "correct" way to go about this.  But if we could boil everything we've learned into one list, it would look like this:

1. Don't panic.
2. Do your homework by talking to friends, family members, and doctors.
3. Go for consultations, and meet people in person (if possible). 
4. Don't be afraid to ask questions. 
5. Pick a doctor who's highly recommended AND you like.  You need to have a good relationship with the Doctor and his / her staff, because you will have questions and you need to trust their answers.
6. Follow-through on your treatment for your child.  

Guest Post: Hudson

Ever since I can remember, I have longed to be a mother. It started as a young girl, playing with dolls and practicing my “mommy” skills, and grew into babysitting for any and all families with children that I possibly could. So on that brisk Sunday afternoon when I took that pregnancy test because I “just didn’t feel quite right,” and it revealed a shockingly positive result, I felt overjoyed, shocked, and blessed. We had only begun trying just a few weeks before and it happened so quickly. Wow. Ryne and I were about to be parents! I loved this child so much already.

Well for several weeks we endured the very exciting firsts of being pregnant and fantasized about what our lives were about to be like as new parents. When we reached 20 weeks of pregnancy, we went in for our traditional “20 week sonogram.” I was anxious, and excited. I had dreamt about what it would be like to see our little peanut (that’s what we called him before we knew it was a “him”). At the same time, I had my reservations about what this experience would be like. My family has a strong history of skeletal deformation of their hands, and I worried about our child also having this deformation and what it might mean for their little life. Much to my relief and surprise, we discovered that our little BOY had all of his fingers and toes, and that was great! However, I noticed that when the sonogram technician zoomed in on his feet, she had very little to say and asked for clarification about the condition that runs in my family. I brushed it off, and didn’t think much of it. When our sonogram was over, they transferred us to a room and said that our doctor would be in shortly to discuss the sonogram with us. Okay, I thought, normal protocol. We are in the clear. Fingers and toes are in check. Good to go. When our doctor entered a few moments later, all I really remember are the words, possibility, and clubfeet. This was when the whirlwind that is now our lives began. My thoughts immediately went to the worst possible picture of Chinese bound feet that you could imagine and I fought back tears sitting on the table in that room in the doctors office.  We were referred to a perinatal specialist and sent on our way. I walked out of that office like a disoriented victim of a disaster.

In the days to come, I would spend many moments breaking down in tears, sobbing. Letting go of that “picture perfect” child that I had imagined in my dreams. How selfishly I did so. I asked God “why” so very many times. I had been through so much already in my life and couldn’t fathom why He had planned this for me on top of everything else. It’s hard, even now, to describe the immense pain I felt. I just couldn’t imagine how I was going to handle all of this. In the mean time, Ryne was so incredibly supportive and strong. I tell you what, this man is my rock. I am sure he went through some of his own emotions and process to handle this, but he did so much more gracefully than I did.  So with the encouragement of my husband and family, I pulled myself out of the hole I had been allowing myself to hide in and decided that I was going to deal with what I had been dealt. Hadn’t that always been what I had done? I was reminded, as I listed to KLOVE one morning on my way to work, that Jesus Christ hadn’t left me for a single moment in all of this. He reminded me that in all things, there is a purpose. Okay, I could do this, I told myself. The moment it all clicked and set a fire within was when my mother-in-law and I were talking and she said something that made me think of our impending challenge in a way I never had before. She said that she just felt as if God had GIVEN us our little man because He knew that he would be so incredibly loved and cared for in our family. We could give him everything he would need with his feet. Wow. I had never thought about it that way. It changed my ENTIRE outlook on life. I was CHOSEN to be Hudson’s mama, because God knew I could love him enough, care for him enough, and be STRONG enough to do so. Yes, I CAN do this, I told myself. My baby needed me, so I pulled it together.   

Over the next eight months of my pregnancy, the Lord reminded me how incredibly blessed I was to have the child I was about to give birth to. God worked through so many people to give us comfort and support. So many of our friends and family prayed every day for our sweet little man. Two very moving events happened when I was still pregnant that will forever remain pivotal points in our journey. A long time family friend and pastor of my husband’s family also had a baby born with clubfeet (it’s really more common than one might think.) They reached out to us and took us to coffee, shared their story, pictures, and prayed with us as well. How incredible it was to know we had people so close that had gone through everything we were about to experience as parents of a clubfoot baby. The other was one evening at a meeting for our children’s ministry. We were really struggling with a lot of different things in our lives at that time, and as we always did we closed our meeting in prayer. Our pastor and friends gathered around us, and prayed for us. They laid hands on us, and our feet and prayed for our son. It was an incredible moment.

Hudson Douglas Huff blessed our lives with his presence September 19, 2012 at 10:14 p.m. 

After ten long hours of labor, and 15 short minutes of pushing…he was finally here! It’s hard to explain the feeling you get when you look into your child’s eyes for the very first time. I had waited

my entire life for this moment. To be honest, those first two days in the hospital I actually kind of forgot that he had clubfeet. So many other more important things to focus on!

Per our orthopedic doctors orders, we took Hudson in for his very first casting the same day we brought him home from the hospital. What an emotional day that was. He didn’t even cry when they put his casts on, but I was a mess. 

As we took our sweet little boy out to the car and headed home, I had the same overwhelming heavy feeling that I did the day we found out Hudson had clubfeet. I bawled. I had to. I needed to get it all out. This wouldn’t be the last time either. We had quite the journey ahead.  For the next several weeks we struggled to get into our new normal with our little man. Like every mother, I worried about my new baby but I had other worries as well. We checked his toes like we were supposed to, and tried to make him as comfortable as possible. All I can remember is thinking that we just had to make it to the next casting. Just like at Hudson’s first casting, I was incredibly nervous at his cast removal and second casting. When the casts came off, his poor baby feet were so wrinkled, bruised, and worst of all he had a few pressure sores on his feet. 

Oh, there I was again. Bawling. This was so hard. I remember just praying. It was all I could do, just pray. So I did. One day, when my cousin was visiting us, she told me about a bible verse that really helped her after having her second son, Joshua 1:9 says, Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. And I just prayed that verse over and over. We ended up writing it on the bottom of Hudson’s first set of casts. 

I wanted to claim it as Hudson’s verse. Then, I stumbled upon this next verse the after having Hudson’s first casts removed. I remember being alone with Hudson for the first time when Ryne had to go out for an errand and I just sobbed.  I couldn’t imagine ever getting past that moment. But this verse just jumped out at me and I knew it was God giving me hope.  Psalm 25:15 says, For my eyes are ever on the Lord, for only He will release my feet from the snare.  Boom, in my face, as bold as it could ever be.  It is my desire that this verse will give someone else out there hope as well. I claimed those two verses for Hudson and prayed and continue to pray them for him.

We experienced many trying times in those first few months with Hudson’s treatment. After getting his tenotomy procedure done on a Friday afternoon our doctor sent us home. That night his casts bled through (as expected) but much more than we had anticipated. There I was again, worried sick. But, we made it through that too. His tenotomy actually went very well & he recovered wonderfully.

Hudson has his casts removed and received his first brace 4 months ago. He is now 6 months old. Time flies. I want so badly to capture each moment and hold them tight. It’s funny now to think that I was least worried about the transition from the casts to the boots and bar as this was the most difficult transition for Hudson. He had lived his little life in casts up to that point, and I think he found some security in them. So not having them was scary, I’m sure he felt weird and vulnerable. The first few nights we were up a few times trying to make sure he was comfortable and adjusted but it was no time before he was fully adjusted and learning to love his brace. 

 

So that’s where we are now. Watching Hudson grow, and learn. He does everything a typically developing baby should do. He cries, laughs, eats, poops, rolls over, and grabs for anything he can get his little hands on!

I’m sure there will be moments that we will have to deal with the ups and downs of Hudson’s club feet, but the most important thing I will remember is that his feet are so very special. Just like he is. And while those feet make him special to us, they do not and will not define him. I cannot wait to watch my son grow into an incredible man of God who will go be the hands and feet of Christ.