The New Normal

It has been difficult to keep this process of blogging about Braeden's feet going when I feel like there is nothing new to write about. The length between visits to the doctor have become longer and Braeden's feet are where they should be. I look back at the past 14 months and the issue of club feet seems almost non-existent. The only tangible reminder of club feet are the zig-zag scares on the back of Braeden's legs. It is pretty exciting and also weird when one comes to this point in a journey. I feel like I have no idea what to do with myself sometimes. No gearing up for a long drive, no rushing around to get things done before a trip, no anticipation trying to figure out whether or not another surgery is around the corner. The new normal almost feels boring. Then you realize that the hyped up anticipation is not normal and continuing at that pace is exhausting. It is like coming off an amusement ride and wanting to get on another one. I mean amusements rides are fun, but at the end of the day the thrill needs to subside. You need to normalize to gain strength for the next thing life hits you with. So I think I need to be more thankful for normalcy and I'll let you know how that goes!

The Good News We've Been Waiting For (Not the Nameless Royal Baby!)

It has been a while since I've written and I realize I have a lot to write about. However, I decided that this blog will focus on the appointment we just had because it was such good news. We finally saw Braeden's orthopaedic surgeon and he looked at Braeden's feet with excitement (Funny what makes people happy!). The doctor said that Braeden's feet look bigger which is a good sign because the tendons are not holding his feet back from growing. He also said that Braeden's feet are at the right flexion (in medical terms - 10 degrees dorsiflexion) in order to walk. Yeah!

The next step is to ensure that Braeden's feet do not go back to their original position. To help prevent relapse from happening, the surgeon has decided to put Braeden in custom-made splints that he wears during his naps and at night until he is 4 years old. I don't know if the surgeon is trying (or experimenting) with my son's situation, but apparently these splints are rare. Most children get the boots and the bar (aka: Mitchell braces) after this type of surgery and have great results, yet the doctor believes that in Braeden's situation the splints will work better. When we were talking with a resident during our appointment, she said that she wasn't aware of any other clinic that uses these custom splints like this.

Looking at the statistics online, atypical clubfeet has a high re-occurrence rate because (as the doctor says) we are fighting against genetics and the feet want to pull back in. Making sure that we stretch his feet twice a day and ensure that the splints are properly used will help to reprogram the tendons and muscles where they are supposed to be. It is interesting watching his feet trying to pull in, especially when Braeden is just sitting on the floor playing or when he is in his jolly jumper. Undeterred by this, Braeden is scooching everywhere and getting into everything like he is supposed to at this age. Also, he is already trying to stand up in his crib and everywhere else he can. I can't believe how resilient babies are! It took Braeden very little time to re-learn scootching on his bum and trying to stand up. Lets face it, as we get older we become wimps! If I had a major surgery like him I'd be the biggest whiner ever.

Medical Miracle

Before heading out to Braeden's appointment yesterday, while waiting to pay for our lunch, an older lady looks at Braeden, then looks at me and says: "My grandson had clubbed feet. After 10 hours of surgery and then casts, he is fine now. It really was a medical miracle!" I look at her, nod and smile. Half believing it, and the other half thinking "We will see with my little guy..."  Braeden's feet have been atypical from the beginning.  Hence, the hesitation.

However, I am glad to say that Braeden's appointment yesterday went "normal-ish." I say "normal-ish" because the doctor that regularly sees Braeden was on holidays so we met one of his colleagues who was just as knowledgeable and just as good a doctor. Our original doctor suggested that Braeden be put into splints instead of boots and bars (aka: Mitchell braces or Ponseti AFO braces) because he believes that his feet will find it harder to regress. As Braeden continues to grow, we will know if the splints are working by whether or not they are keeping his feet where they are supposed to be.

What I found surprising was the drastic change in Braeden's feet when the orthopaedic technician removed Braeden's casts.

Before First Surgery (August 2012)

After Second Surgery (June 2013)

   
Looking at pictures of his feet like the ones above, puts into perspective how much the medical world has progressed. It was only 10-15 years ago that club feet were treated by breaking the bones of the feet and then casting them. Now, serial casting, cutting certain tendons and then re-casting are used to correct the feet. Thankfully, the current treatments can be less invasive and waaayyyy less painful. So really, the lady was right, treating club feet by surgery and casting is a medical miracle.

Patience is NOT my virtue!

I must admit I am an impatient person. I am a person that is always about get things done and a get it over with type of person. As a mother, low and behold, I am still impatient. But the worst part is I recognize it even more. Something about motherhood brings out the best and worst in me. I have been assured that most mothers feel this way so no worries about confirming these thoughts!

The impatient mother came out today when I sat and thought about Braeden's upcoming appointment (or lack thereof). My husband and I realized a couple of days ago that the children's hospital had not given us Braeden's next appointment date via a phone call or a letter. Puzzled about this situation, I decided to call the children's hospital on Tuesday only to find out that someone had forgotten to tell the scheduling department that my son had a follow-up appointment. She also informed me that Braeden's orthopaedic doctor will not be in for the next 2 weeks. The scheduling lady was nice and apologized about the mix up and told me that she would call about what the doctor wants to do about Braeden's appointment. During the phone call, I was gracious and forgiving.

That was 2 days ago!

As I watched Braeden drag himself across the kitchen floor today, suddenly the impatient bear (mixed with a tad bit of anger) reared its ugly head and the only PG thoughts that I can express online were: "I have waited almost 6 weeks for these stupid, gross-looking casts to come off of Braeden's legs and they forgot to make a follow-up appointment!!  Also, 'nice' scheduling lady hasn't called back yet and I might have to wait another 3 weeks until the casts come off!"  By this time, Braeden has scooted at my feet, one casted leg behind him and the other in front with his big brown eyes begging me to pick him up. Of course, I pick him up because who can resist those huge brown eyes. Looking back at that moment, my impatience and tad bit of anger stems from two things. The first is yearning to experience a sense of normalcy. This year has been far from normal and not being able to experience the excitement of the crawling, standing, and walking milestones has been heartbreaking. Yes, I know that they will come and yes, I am really enjoying the fact that I am still  faster than Braeden, but that still does not stop the impatient yearning of normalcy.
The second stem is the desire to move on to the next chapter of club feet. In past blogs, I wrote about how this process was suppose to be simple - 6 to 8 weeks of casting, tenotomy, braces and walah this baby is healed! But the clubfeet journey has not been as simple as all the hospital literature said it would be. It has increasingly become complex and I so badly just want to get to the next phase of this journey.

Ultimately, I want to be able to wear a t-shirt that states: "Clubfeet: I've been there, done that!"

Are His Legs Broken?

It never ceases to amaze me what type of looks, questions and statements you get from others when you go out somewhere with a baby who wears casts.The looks go from concern to I get it. The top three questions are always: "What happened to his legs?", "How did he break them?" or "Club feet?"
Followed by the top three statements: "Poor baby!", "My grandmothers, uncles child had clubfeet" and "He'll be fine." I keep telling my husband that I can't get out of a store without  someone asking what is wrong with Braeden or needing to stay and listen to a story about someone else's experience with club feet."

It is remarkable that so many people recognize the situation, have a story to share, and can connect with me through this experience. It is also equally remarkable that half the population that I run into have never heard of club feet. In both situations, I figure that this is my chance to connect, educate and tell people a part of our story.

Happy Misunderstandings

Phone call to the hospital last Monday:

Us: Hi! We have an appointment tomorrow for Braeden who had surgery two weeks ago and we were just up there so we were wondering what the point of this appointment is and if we really need to go. We also need to know ASAP because if we do need to go we would have to leave this afternoon.

Nurse: Hold on. Let me see if I can talk with the doctor about your situation because your liaison nurse is sick today. 

Us: Okay (Hold for 5 minutes)

Nurse: I found the doctor and he said that you do have to come because he would like to see Braeden's stitches and put his feet up 5 degrees. 

Us: Oookkkaayy.... See you tomorrow. Thank for letting us know. [Hang up and both of us look at each other, ask: does that mean Braeden gets his casts off?  Shrug and do a mad rush of packing]

Oh what? 

Checking out the stitches? Does that mean new casts? Yep! 

We were shocked! I was happy because Braeden's casts were getting pretty gross :)

Our appointment this past week meant that we were able to see Braeden's wounds and to re-cast his feet into place. When they took the casts off, it was neat to see the scars. They are in the form of a 'Z' which is basically what Harry Potter had on his forehead! The doctor said that the scars are healing really well, no sign of infection and the feet look like they have the ability to move into the ideal position. Wahoo!

The worst part of the appointment was watching Braeden cry and shake in pain as they steadied the feet to put them in casts. My husband and I both knew that this had to happen or the surgery wouldn't take. As a mother, I think I have done well up to this point with Braeden's surgeries. Yes, I did worry and yes, I held it together as they took Braeden to the surgery room, but seeing him in pain almost made me break down. This emotion took me by surprise. Luckily, the orthotech was able to comfort me by saying that once the new casts were in place it would be easier for Braeden and that he would get used to the casts again.

It has been a week since the appointment and the orthotech was right, Braeden is used to the casts. He bangs those casted legs against the floor, his crib, the wall like it's nothing. We also found out that the lack of sleep was probably due to Braeden getting muscle spasms. The doctor explained that during the day, Braeden most likely does not feel the muscle spasms because he is busy playing or being held, but once things settle at night he would notice them more. Like I said in previous blogs, there is nothing we can do for muscle spasms, but the doctor suggested that Tylenol or Advil would be good to give him before he goes to bed to take the edge off. Ever since we have done that Braeden has gone to bed and is now back to his regular sleep routine. Yeah! Wahoo! So very excited!

The next step is in 3 weeks when we will be heading to the hospital again to remove the casts and hopefully get splints again or braces. However, it is dependant on how well Braeden's feet have healed. Wish us luck!

Hoping, Wishing & Praying

These three words encompass our answer to what is next for Braeden. We hope that the surgery takes, we wish that no more surgeries have to come and we pray (along with many other people) throughout this whole process.

The doctor was pretty positive that Braeden's surgery worked because he was able to get Braeden's feet up to 10 degrees, which is ideal. However, there is still that slim chance that the surgery did not take and we are hoping, wishing and praying that this will not be the case.

We hope, wish and pray that by the end of 6 weeks in casts, Braeden will be put into either braces with a bar (aka: Mitchell braces) or clam shell braces (what he had after his first surgery) to hold his feet in place. Kendall and I are wanting the Mitchell braces (though they're more expensive) because they give Braeden a little more mobility with his knees. I'm not sure how long the braces will be on for, but from what I've read about atypical club feet, my guess is that he will be in them full time, and then just while he sleeps until he's around 4.

Lastly, we are hoping, wishing and praying that he will not have to go through another surgery. In Braeden's club foot case there is a higher chance of re-occurrence around the age of 2 and the only option would be for surgery at that point in time.

All that being said, Braeden is still doing great. He loves looking at his toes in curiosity and grabs at the ends of the casts periodically. And maybe even eats the cotton from it. Yuck! Good thing cotton is digestible... Sometimes at this age, they tend not to sleep well because they love to wake up in the middle of the night and play. At first I thought it was his teeth, or pain or muscle spasms post-surgery before I realized the little guy just wants to be up and have us playing with him. We are just thankful that the change in sleep patterns is due to a phase he is going through and not because of pain.    

Whac-A-Mole

I have huge sympathy pains for mothers whose babies do not sleep through the night. This was our reality with Braeden the first few days after coming from the hospital. He was waking up every two hours screaming and crying, which is very rare for him (his sleep pattern is now slowly regulating). The anaesthesiologist explained that if the body has two pain areas, usually one pain area becomes worse than the other, meaning that Braeden could be experiencing massive amounts of pain in either his mouth because of teething or his feet because of the surgery. Or Braeden could be experiencing muscle spasms in his legs, which we can only wait out. As a parent, it is both difficult and frustrating to figure out what to do in these circumstances. Do we elevate his legs because he feels pressure? Does he need to breastfeed? Even though we just fed him solid foods an hour ago? Do we give him more pain medications? When do wean him off of pain meds? Does he want to be lying down even when he is screaming his head off?

Since Braeden can't communicate, it is hard to know what next steps are. We are always guessing, second guessing, trying anything we can to calm him down. In a way, it is normal for parents to feel like they are playing the game whac-a-mole when trying to comfort their child. Eyes darting back and forth, trying to figure out just the right thing to make the crying stop. But when the guessing game is exacerbated by the surgery, it can make it feel like you're playing three whac-a-mole games at the same time instead of just one.

As we come through these challenges, one week after surgery it's been a relief to see him slowly coming back to himself, laughing lots and swooning all the old ladies at the grocery store.

Day 2: Post Surgery

No one ever tells you that the second day of something is always the hardest! I experienced this after my mom passed away, after giving birth to Braeden and now Braeden's surgery. Man, I wish people would tell you these things!!

Anyhoo, Braeden had a pretty rough night last night. He woke up at least once an hour. The nurse said the second day is always the hardest because the morphine wears off and babies start cluing in that their feet are bound by heavy plaster. Miraculously, I felt like I was gifted with divine patience last night and was able to handle the hourly wake ups. If I was giving 'Dear Abby' advice about any child going through surgery it would be the same as when you gave birth to it - sleep when the baby sleeps.

Despite Braeden's lack of sleep pattern last night, I think he is doing absolutely amazing. Although his legs are bound up, he is still laughing and making cute faces. He is supposed to lie down on his back and elevate his legs as much as possible for a couple of days after surgery. Despite wanting to get up and interact more, he only whimpers when he is put down. On his tummy, he is still trying to move around like he has no casts. So watch out world, this baby is going to be super strong, he's a trooper!

Quick Update (Sort of)

It is the morning after Braeden's surgery and I have to say I am impressed with my little boy. Due to all the comings and goings of a hospital room, the longest he was able to sleep overnight was 4 hours straight, which is pretty good. God bless pain medication!

Braeden did so well the morning before surgery too, even though he was starving because he had to fast. Surgery itself went really well - 4 hours long with casting, an hour longer than expected because there were additional cuts needed in his feet. The doctor also said that when he looked at where he cut the achilles tendons last time, the tendons had tightened up so much that it did not even look like it was severed before! However, the good news is that the doctor was able to get the flex in Braeden's feet that he wanted to and hopefully we won't need to do another surgery for awhile (maybe ever).

It took Braeden an hour to wake up after surgery before we met him in the recovery room, but he wouldn't settle for two hours. I tried breast feeding but he just didn't have the energy to suck, so we decided to give him sugar water, which he took. He was pretty gassy, so we gave him gripe water and that settled him a little. The doctor said with the morphine drip and other various pain medications, Braeden should settle in recovery, but if he didn't then it most likely meant that the casts were on too tight (apparently this is more common than we first realized). In the end, we had to split the casts-AGAIN! Luckily, this time it did not take 6 hours to figure that out. 

Right now, Braeden is fast asleep and we are trying hard to elevate and ice his feet when we can. He is such an active baby so it makes this part really fun :) 

Surgery Number Two

It has been a while since I have wrote a blog. For a while there I didn't know exactly what else to write during the waiting period between surgeries and now the excuse has been family circumstances. Now, I have a ton to write about :)

The next leg of the clubfeet journey is another surgery. A tenotomy (aka: achilles tendon) lengthening and loosening of some of the ligaments in his feet. Apparently, the poor guy will be under anaesthesia and the surgery is going to be around 3 hours long. To date, Braeden has been wearing braces at night (which he just grew out of) and we have tried to make a habit of stretching his feet 2-3 times daily to help keep his feet from regressing before surgery.

I have mixed emotions about Braeden's surgery. I am excited that his feet are going to be fixed, but it is mixed in with fear. With my mom passing away from cancer recently and seeing her in the hospital before and after she passed away, somehow I think my brain has equated hospital experiences with grief. I am also a little apprehensive that the surgery might not work and that getting his feet fixed might be more than meets the eye. Now, I know that some of my fear stems from these events being so close and really its about convincing myself that the two events are absolutely different. But you know how it is, you are your own worst convincer! However, I do have faith in our orthopaedic team because they have been so great at taking care of our situation thus far and have been good at communicating the reality of our situation even though it has been difficult for us to hear at times.

Until after surgery . . .

A Hopeful New Year

Braeden was a star patient today! With little to no crying we were able to have new splints made. I am pretty sure that the orthopaedic technician was excited that he didn’t have to hear Braeden scream during the whole process! Getting a pair of splints made takes about an hour and a half. It all starts with putting a cotton stocking over his leg, which gets covered with a cotton wrap and then another stocking put over that. Essentially a cotton wrap sandwich.  Then the orthopedic technician (aka ortho tech) wraps fibreglass around the cotton wrap sandwich and somehow holds Braeden’s wiggling leg and foot in position for 30 seconds to a minute until the fibreglass dries.  Then the whole process happens again with the second leg. After both legs are finished the ortho tech cuts the casts in half and lines them with a nice soft material for when Braeden’s wearing them (and stylish Velcro straps to hold it all together).

Braeden's splints

Braeden's splints open 

We are also very happy and relieved to report that Braeden’s feet have not regressed. Wahoo!  With the help of the splints being worn at night and the diligent stretching that Kendall and I have been doing, Braeden’s feet are staying where they are supposed to. The doctor said that Braeden’s feet are growing (I was afraid they weren’t) and since all things are going well, we do not have to venture the 5 hour drive to the children’s hospital for another 3 months. Our next appointment will be a pre-op appointment to check on Braeden’s progress and talk about the upcoming surgery in May.    

Resilency

It has been a long time since I've written on the blog and my excuse is that I have been travelling for a month visiting family, so sitting and reflecting was far from reality. However, during that time it was awesome seeing Braeden interact with grandparents, aunts, uncles, and cousins. He definitely brought joy wherever he went with that killer smile.

Today, I've been thinking and looking back at pictures of his 6 month old life and realized that he has endured so much already. He has had serial casting done, an ear infection, and has undergone surgery. It almost sounds like old grandma complaints "My hip is hurting, my bunions are infected!" and he is not even 80 years old yet. In all seriousness though, he is a trooper! Someone recently told me that she believes that children that undergo medical experiences tend to have the personality that can hack the annoying doctor's appointments, the painful surgeries and the ear infections. This has to be Braeden's personality. He is so laid back, fairly easy going, smiles after the appointments, the foot stretching, and also sleeps well. Cross my fingers that he continues this personality traits as he gets older.

To commemorate Braeden's upcoming appointment, below are a few pictures of how much his feet have changed.

Braeden 5 days old. Picture by Shannon May Photography

Braeden's feet a month into casting

Braeden's feet after surgery and 3 weeks of casting.
This is how his feet are currently.