Wednesday, March 11, 2015

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.

Thursday, March 5, 2015

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.

Friday, October 18, 2013

Article: Of years of love, and a long goodbye

There is perhaps nothing more brutal, difficult and draining than taking care of someone who can't take care of themself.  But at the same time, there is perhaps nothing more rewarding.

Missie's cognitive decline was gradual and began a dozen years ago, Cousy said. She would ask him the same question, over and over. She hallucinated, grew disoriented and struggled with balance. But she always knew her husband, and she bristled at any suggestion that she suffered from dementia.

So Cousy worked hard to create the perception that his once-independent wife was vital and healthy. Because she believed she could still drive, he shipped her station wagon to their place in Florida each winter so she could see it in the driveway. Artificial red flowers were planted in her garden. He did all the household chores and let her think she performed them herself.

"My dad provided an environment that allowed her, in her mind, to be a fully functioning adult," said daughter Marie. "It was amazing to watch."

Wednesday, August 21, 2013

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...

Monday, August 19, 2013

From Pirate to Playskool

For the last six weeks, Heather and I have been living in Denial.  (It's a nice little place, lots of neighbors.)  Why were we in Denial?  Because neither of us wanted to believe that Eli would face yet another surgery.  Yet there we were.  Once again sitting at Children's Hospital. 

While at our last Orthopedics visit, the doctor made a comment about Eli's eyes.  We knew we had to face reality, and that meant seeing another specialist. So over the last four months we've been dealing with eye issues.  All of that "ended" on last Friday when Eli had surgery. 

The good news is Eli has been doing very well since.  This was Eli's fifth surgery in 21 months, and by far the easiest he's faced from a recovery point.   He was able to sleep almost continuously from the time the anesthesia knocked him out to 5:00, when we finally got him out of bed.  The only times he woke up were when I had to carry him to someplace new (like his stroller, car seat, and bed.)

Things with his health are always difficult.  It's hard as a parent to see your kid sick.  But Eli also seems to have the super-human ability to always be on the extreme end of illness.  So in the back of our minds, we're always worried about the other shoe dropping

That's why seeing Eli up right after sleeping through much of the day will live in my memory as one of the greatest memories of my lfie.  And even better, I was able to get it on camera...

The first time he's every "played" with his toys - 15 minutes after waking up

While this may seem like any kid playing on the floor this is the first time Eli has done two things:

1) lay on the floor on his stomach.
2) play with his Batman Little People.

We always assumed Eli was delayed in some of his play.  Or that he just didn't have interest in non-physical activity (he spent the first 6 months of his life on his back, so I can understand.) We simply had no way of knowing that so much of his play was being limited by his ability to see.  As a parent it's heartbreaking to know that your kid struggled in silence because you didn't know there was a problem.  But the good news is, we were able to get it fixed.  And for that, we are eternally thankful. 

Wednesday, July 24, 2013

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.  

Monday, July 22, 2013

What it Means to Be a Dad

I spend a lot of time thinking about what it means to be a Dad. What kind of legacy am I creating for my kids? How do I want to build into them? How am I harming them through my own weaknesses?

These are thoughts that come rushing into my mind more frequently when Eli has another medical problem.

Stress doesn’t really make for good choices!

As I I think the question I always ask myself “what would I do?” Would I have the courage to push forward? Do I have the strength to keep fighting for my family? I think the surprising answer has been “yes.” It’s not easy. It’s not fun. I don’t feel strong. I don’t feel courageous.

But I keep two thoughts in mind.

1) If not me, who?
2) Jesus went through far worse, and He keeps fighting for me.

I learned long ago that faith in God doesn’t protect you from suffering. What it does is allow you to survive suffering. It changes the meaning of suffering. And that’s what it’s done for our family. Life has been hard, unbearably at times. But slowly over the last two years, we’ve changed. We’ve been forced to find new rhythms to grow us together. We’ve been forced to prioritize what matters to us as a family. We’ve been forced to appreciate the good things in life, and celebrate the miracles we receive. That’s why these are some of my favorite pictures:

That's the face she has for Dad

Mom gets a bit more introspective

These were taken minutes after we learned that would need surgery (his fifth in 21 months), and as devastated and exhausted as Heather and I were, we could still laugh.

At the end of the last post I mentioned that Job’s reaction to suffering was grief AND worship. Then I wondered if I would do the same thing? I think the answer is yes. Not only that, but I think our ability to laugh and worship God is a miracle on it's own.  One that might sound crazy to some.  And it would have sounded crazy to me even two years ago.  But here we are.  God has grown our family. He's changed the meaning of suffering for us.

God is good. Even when we can’t feel it in the moment.  Looking back, nothing is more obvious.  In fact, this is one of the lessons I want to leave my children.  I want them to understand that suffering doesn't mean you've been abandoned.  That suffering doesn't change your value.  Or God's character.  It's not an easy lesson to learn, and it's not an easy lesson to teach.  But it's an important lesson.

Although maybe next time we can learn a lesson while sitting on a beach drinking Margaritas.