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!

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.

Assiduous.

It is Tuesday and I'm antsy. One of the reasons for being antsy is I am anticipating the mad rush of traveling somewhere for Braeden's appointment. Before I was pregnant with Braeden, I was a travel studies coordinator at a university where a team of us worked hard to plan 2 month travel terms to Europe and Asia for packs of 20-30 students. The last two weeks of preparation before boarding the plane was an intense whirlwind where I felt I could not relax until take off. These intense feelings seem to have crossed over with leaving for Braeden's appointments. Ever since Braeden has been 3 weeks old, we have driven to appointments in other cities almost every week. However, this week there is nothing, absolutely nothing. I'm not driving in a car for longer than an hour, I'm not frantically rushing around the house washing the dishes, doing the laundry, packing, cleaning, etc., doing whatever I need to do to prepare us for leaving.

I am staying put.

But staying put is weird. It is uncomfortable. So much so that I want to keep myself busy.

Staying put has showed me that this club feet thing is all consuming. Most of my waking hours are dedicated to Braeden's feet. Currently, we are trying to stretch them at least 3-4 times a day for 30 seconds so that there is less chance of regression. Last week was about trying to put the splints on and making sure that they do not pinch his legs. This week is calling the doctor because the braces are too small for him and discussing the next plan to implement. If someone asked me what advice I would give to the busy parent(s) of a club foot baby it would be 4 things: laugh, reflect, give space to think about other things and staying positive. Laughing because it releases so many positive endorphins and because laughing is just great for the soul. Reflecting because it helps you heal and it allows you to clear your head. Giving space to think about other things helps one feel like you are not always engrossed with the subject club feet. Lastly, staying positive because sometimes that silver lining in the cloud is the only thing that keeps you afloat that week.

Casting 101

Braeden's casts were wrapped at a hospital fracture clinic a few hours away from where we live, so we had to make sure that Braeden was as comfortable as possible before and after his casting appointments. Here are some tips, things to expect, things I brought and things I wish I knew going into the casting appointments, especially the first on.

1) I wish I knew that some (if not all) babies scream the entire time they are being casted. Braeden screamed the entire time the first time he was casted! Luckily, I'm not one of those mothers who gets embarrassed by her screaming baby. The benefit is that after screaming the whole time, he was KO'd for quite a few hours.

2) Some babies are strong enough to break their casts. Yep! He did that too and not just once, but three times. The first time he was casted, Braeden cracked his casts where the knee bent 30 minutes after his appointment, so we had to rush back to the fracture clinic to reinforce it.

3) At Braeden's first appointment, I wish I had brought a soother or something for him to suck on.  It helps to soothe them while they are on the table. We also allowed him to suck on our finger during casting sessions and that helped too. On a side note, I was one of those parents who was somewhat adamant on not giving their child a soother, but that stopped the first night the casts were on. The first two nights the casts were on were the toughest for us and Braeden. He would wake up almost every hour. I finally gave into the God-given gift of plastic and the sound of silence had never felt as wonderful as it did that night as it was the only thing that allowed him to get back to sleep.

4) Don't use clothing that you don't want casting bits on. I always carry at least two to three onesies in the diaper bag anyway, but I made sure to have lots for casting so that Braeden had a change of clothes after casting. Like I said earlier, casting bits get everywhere.

5) Bring wash cloths and a plastic or wet bag. After the casting is finished, the baby from the waist down has plaster everywhere and to wipe it up the ortho tech gave me the roughest hospital cloth ever. It was like sandpaper! So the next week, I made a note on my phone to bring a soft wash cloth to wipe the plaster bits away. Plaster bits sometimes get in the butt crack and if not wiped off good they get angry! The bag is to put the wash cloth and the onesie in.

6) Urine and poop get on the casts. It is gross and you do your best to wipe it off, but you are also glad that
casts are changed once a week.

7) We changed and fed Braeden before we went into our appointments so that he was as comfortable as possible during them. Sometimes that meant he peed or pooped on the table. Makes for good stories later on.

8) The first time holding your baby after casting could be awkward because they are heavier and you also feel like you don't know how to hold them. You adjust to this awkward moment pretty quickly.

9) Know that friends might be scared or find it hard to hold your baby after he or she has the casts because they also don't want to hurt them. I had to assure some of our friends that holding him normally is fine and that they weren't hurting him.

10) And last but not least, speak up! Braeden wears thick cloth diapers, and when the ortho tech was casting him I had to remind him a couple of times during the casting period to not cast so high up on the leg in order for his diaper to fit. Also, if you have any questions (whether you think the questions are dumb or not) about the casts, don't hesitate to ask even if you think they are too busy. Asking any questions helps to understand the process better and eases your worries.

Parental Clubfeet Guilt Club

Someone told me once that "you are your own worst critic." I believed it when I heard the saying and I believe it even more now that I am a mother. At our second ultrasound, the technician told us that Braeden was going to have clubbed feet. After I heard that diagnosis, it took me a millisecond to realize that I had started to blame myself for his deformed feet and quickly stuffed those feelings away because for one, I didn't want to deal with them and two why should I feel guilty for something that is fixable. But from time to time, I would say and think things like: "I never took my vitamins that is why he has clubfeet", "I sat too long and squished his feet", "I should have known and did something about it", "I should-a", "I would-a", "I could-a." The guilt was starting to become overwhelming until one day I stepped into the doctor's office and she asked me if everything was okay and I just burst into tears.

Before we met with my GP that day, we had an appointment with the orthopaedic surgeon and I thought I was handling everything perfectly. I read the 8x12 booklet her secretary gave me on the Ponsetti method, I'd done my research, asked the questions that most parents would ask and I was ready to take on this challenge. However, I refused to recognize that there are strong emotions attached to hearing that your baby will not be perfect.

In hindsight and reading other parents' experiences with club feet, guilt is part of the club feet process and not allowing yourself to work through and feel these emotions stunts the acceptance of the process. As a parent (or a society influenced ideal), you envision and even expect that your own will be perfect and nothing will go wrong.  For me, having to grieve the loss of the "perfect and normal baby" was difficult and also difficult for others to understand because after all, it was only clubfeet.

After calming down from my surprising emotional outburst at the doctor's office, the doctor recommended that I talk about how I was doing with those that were closest to me no matter how stupid or insignificant my feelings may feel. She also said that not talking about my guilt could lead to depression and scared me enough to let down my walls and talk. As I started reflecting and talking about the guilt with friends and family it was shocking how much talking helped. Thoughts like these can be easily be seen as ridiculous and/or crazy, but you really can't help thinking them. Saying these out loud and vetting them through those around you helps you see the truth (or the non-truth in this case). Plus surrounding yourself with a strong and loving community is like gifting yourself with talk therapy!

The Pain of Expectation

I wanted to begin blogging about our experience with club feet when our son got his first casts, but that was 2 1/2 months ago. Oops! But as the saying goes: "It is better late than never".

Our story begins at the second ultrasound. The doctor determined that Braeden would have club feet, so my husband and I researched the best methods to correct his feet. Like all good researchers, we started on google! We stumbled upon the Ponsetti method. We found a doctor that was experienced in the method and when Braeden was 3 weeks old we started the first phase of the Ponsetti method - casting. Each casting session was exciting because we saw movement in both feet. My husband and I thought that everything was going so well that we just wanted to get the surgery over with, and then braces and wahlah everything would magically be perfect! Unfortunately, this is not the case.

Last Tuesday, we were at the IWK (Children's Hospital) for a follow up appointment after the surgery. By this point, my husband and I were excited about the results of the surgery. We were expecting that Braeden would be in the cheaper braces and the road to finishing the clubbed feet process was so close we could smell it. However, when the casts came off the doctor explained that the surgery didn't take as good as he would have liked, partly because Braeden has an atypical form of club feet. This means that his feet are smaller and pointed down further than they should be and he will require more intensive treatment, potentially another surgery and more expensive braces. Something both of us were not anticipating. The surgery was difficult on me because I tend to foresee the worst and there is something about knowing that your little one will be under going anaesthesia that tugs at your heart, so to hear that potentially another surgery would be more likely was devastating. I know that everything is going to be fine and this is just a blip on the radar in the grand scheme of things, but currently these are the emotions I need to work through and want to put out there. Hence, the reason for this blog. 

We are travelling to the IWK sometime within the next two weeks for another check in and to get his braces on. I cannot wait to trade in the splints for braces because adjusting his feet into these splints have not been my idea of fun!