Braeden's fevers have been at their worst the past couple months. He has had at least 4 fevers, 2-3 ER visits, lots of emails back and forth from our nurse practitioner. We have seen the orthopaedic surgeon, the allergist and paediatrician. Pretty busy couple months for the little guy!
Since we have just gone through the gauntlet of doctors, we had to re-learn that our son is an anomaly. I mean all parents think that about their own child/children right?!
But mine really is :)
The orthopaedic surgeon reminded us that Braeden has atypical, atypical club feet and the fact that he was born without any ACLs in his legs also makes him atypical. The surgeon assured us the great news that Braeden's feet are not turning in. The bad news is that the ligaments at the back of his feet are extremely tight, which is likely related to his calf muscles being atrophied. This combination makes it more difficult for Braeden to run normally. Hopefully with some stretches and exercises we can help strengthen his legs and be able to make them function properly.
The paediatrician's take on Braeden's condition was "it is mysterious." The paediatrician was extremely thorough in her quest of finding out what is going on with Braeden's fevers, side pains and joint pains. She made us feel like she was thinking about all kinds of avenues on what is happening.
In the end, both the orthopaedic surgeon and paediatrician were on the same page and have referred Braeden to a paediatric rheumatologist. A rheumatologist specializes in evaluating and treating the pain in the joints, muscles, bones, and tendons. Things like arthritis, autoimmune disorders, prolonged fevers and unexplained symptoms such as rashes, joint swelling etc. are also what they specialize in.
As we wait for the next specialist appointment, we will continue to document everything related to the fevers. Braeden has been such a trooper through this entire ordeal and when the fevers are not taking his energy away he is still playing, climbing trees and making us laugh with his amazing imagination. We are hoping, wishing, praying for great outcomes and an amazing rheumatologist who can give us answers. So really we want Dr. House, but one with better bedside manners!
Friday 4 November 2016
Monday 19 September 2016
Hello again ER!
I am home from the ER once again. The third time in the past month. Braeden has been sick a lot lately and we have no idea what is happening. The past 4-6 months or so he has been having fevers quite regularly. I can pinpoint when he will get his fevers - between the 12th - 15th of every month. This month the fever began on the 16th.
We were hoping and praying that stronger antibiotics had cured what we thought was strep throat. Unfortunately, this may not be the case.
A friend asked me if not knowing what is happening with my child has been hard on my head and heart. My initial response was no, its just frustrating not knowing what is happening. I shrugged it off like it was nothing. Later, when I went home and had time to think about that question, tears welled up and I said to myself: Are you kidding? Of course, it is hard on my head and heart. I pride myself on not knowing how I am really feeling at any moment... Ha! No I don't! That's just a part of myself that wrecks my soul if I don't take time to figure things out.
I realize as a mother with a child who is constantly in need of medical attention that it is soooo incredibly easy to forget to take care of yourself because as a mother or a father we tend to put our kids' needs above our own and secondly, as parents we are rarely asked how we are doing with the situation. I am not putting blame on anyone 'cause I am at fault here too. As people we are conscious of what is immediate and the situation that is directly affecting a person. We seldom consider how a situation affects those indirectly.
These (for me at least) don't help in my awareness of taking care of myself. It just exacerbates the separation of my emotions and mind. Although, all of this sucks and I cannot understand why life is happening the way it is for my son. I am learning a ton about being a medical parent and what it means to always be vigilant in taking care of yourself. And most importantly how taking care of yourself is not just important for you, but to the little boy who needs you when his fever returns.
We were hoping and praying that stronger antibiotics had cured what we thought was strep throat. Unfortunately, this may not be the case.
A friend asked me if not knowing what is happening with my child has been hard on my head and heart. My initial response was no, its just frustrating not knowing what is happening. I shrugged it off like it was nothing. Later, when I went home and had time to think about that question, tears welled up and I said to myself: Are you kidding? Of course, it is hard on my head and heart. I pride myself on not knowing how I am really feeling at any moment... Ha! No I don't! That's just a part of myself that wrecks my soul if I don't take time to figure things out.
I realize as a mother with a child who is constantly in need of medical attention that it is soooo incredibly easy to forget to take care of yourself because as a mother or a father we tend to put our kids' needs above our own and secondly, as parents we are rarely asked how we are doing with the situation. I am not putting blame on anyone 'cause I am at fault here too. As people we are conscious of what is immediate and the situation that is directly affecting a person. We seldom consider how a situation affects those indirectly.
These (for me at least) don't help in my awareness of taking care of myself. It just exacerbates the separation of my emotions and mind. Although, all of this sucks and I cannot understand why life is happening the way it is for my son. I am learning a ton about being a medical parent and what it means to always be vigilant in taking care of yourself. And most importantly how taking care of yourself is not just important for you, but to the little boy who needs you when his fever returns.
Tuesday 6 September 2016
No. Really?
In a long series of events and circumstances, I literally was made to come back and write on this blog. To be honest, I knew one day this would have to happen.... maybe? Sort of? And hopefully not. It takes times to write these things and now that I'm a mother of two and working it just gets harder to put that time aside and kids are a great excuse for avoiding time consuming things :)
The last 2 by 4 that made me return was a beautiful drawing done by our friend who lives on the other side of the country. I haven't heard from him in a long time. At the university that my husband works at are many talented students who write poetry, play music, paint and draw (go figure 'cause this isn't even an art school!). Anyway, I try and acquire a piece of art from all the artists and this one happened to come in the mail the same week I've been thinking of starting to post. After an already emotional week, my husband opens the envelope, reads the letter and shows me the artwork.
I burst into tears! My resurfacing begins.
Tuesday 17 September 2013
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!
Tuesday 23 July 2013
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.
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.
Thursday 27 June 2013
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.
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.
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.
Thursday 20 June 2013
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!"
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!"
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