It’s been a busy year…

As many of you know, March is Hemophilia Awareness Month. This is a time for our friends and communities to shine and raise awareness of Hemophilia and other rare bleeding disorders.

It has been so long since I wrote a blog entry. Too long, actually.

I have promised countless times over the last several months I would write an entry or two but I just haven’t taken the time to sit down and do it. However, from my perspective, it isn’t necessarily a bad thing! Ethan has been doing exceptionally well, sometimes so well that I feel like there is “nothing” to write about.

We have had a year of a lot of firsts, many new experiences, and a ton of questions.

September was a big month for us – Ethan started kindergarten. He was so excited to finally start school, and he was more than ready! We knew there might be some challenges but we stood by his side and encouraged him every step of the way. It was a big transition for all of us, but I think we have adjusted well!

Starting school meant Ethan would be in a classroom setting with only one teacher, as opposed to having three daycare teachers (one of them being one-on-one support solely for him) which he was accustomed to.

Starting school meant Ethan would be playing in gym class and during unstructured times with 15 to 20 other classmates who had no idea about Ethan’s hemophilia and the severity of his needs.

Starting school meant Ethan would play outside during lunch with 100+ primary children, all running around at the same time, vying for the same few basketballs, fighting for time on the same few swings.

Starting school meant Ethan would be in the care of someone else all day long and we wouldn’t be able to protect him and ensure he was safe at all times.

Starting school meant many teachers would be nervous and uneasy as they weren’t entirely familiar or comfortable with dealing with Ethan’s needs, issues, injuries, etc.

But thankfully starting school also meant I was lucky enough to be working in the same school as Ethan. Not just for him and I, but also for those apprehensive teachers who had an endless amount of questions. Ensuring they fully understood Ethan’s hemophilia and the severity of his diagnosis, as well as signs to look for in the event of an injury or emergency, became a priority for them.

I was lucky. Ethan was lucky. And I am willing to bet those teachers felt pretty darn lucky too!

It was a little nerve wrecking for a while; undoubtedly a bit of a change. Knowing in the back of my head that Ethan looked “normal” was certainly one of the biggest challenges. I knew all too well people misconceived and misunderstood hemophilia. It’s hard to take the severity of it so serious when you have an extremely smart, active, and athletic little boy in your care. You find it hard to perceive that he can be injured so easily. You find it hard to imagine that he can bleed so severely. But he CAN. And he WILL.

Knock on wood we haven’t experienced that (yet). Since September there have been a handful of minor mishaps, but nothing that required medical attention outside of the school. Pheww!

Because we were so concerned for Ethan’s safety and well-being in the classroom and at school, we pushed for him to have the support he needed. We pushed for him to have extra supervision (provided by a student assistant) during play time and unstructured time such as recess and lunch. It didn’t come easy; we persevered and persisted. We wrote countless letters and emails, made many phone calls, and had several meetings. But after much determination Ethan was approved and soon began to receive the extra care and support he was entitled to have based on the severity of his hemophilia.

Ethan is a good kid. It didn’t take the teachers long to figure out that he is genuine and understanding about his injuries and pain – at least at this stage in his life, haha. If he is hurt, he will find someone to tell. He knows he has a special back pack in his classroom full of medical supplies. He takes it wherever he goes: to gym class, music, outside, etc. Inside there are ice packs, bandages, gauze, sterile gloves, and an endless amount of other medical supplies! He knows to go to his back pack if there is anything he needs. He knows to reach out for help if he is injured… even if it is minor. Hopefully this is something we can instill in his as he grows up and goes through school. It is so crucial.

So, as if school wasn’t a big enough adjustment for us, Ethan wanted to play ice hockey this fall. We knew it was coming. He is so much like his Dad in that sense – naturally athletic. He is interested in, and loves, all sports. It comes pretty naturally to him.


So, after much hesitation – and avoidance – we met with his wonderfully amazing Hematologist, Physiotherapist, and Hemophilia Nurse at the Janeway. They knew it was coming as much as we did, and they have been so supportive in every aspect. They see him fairly regularly and know his personality. They can clearly see his athleticism. His muscles are strong and he is very agile. Which is really good for a kid who has severe hemophilia! After all, they keep telling us the stronger your muscles, the less of a chance you will have an injury.

So, after having a good chat with Ethan (after all, he was the one who was trying to convince them), they agreed that it was ok for Ethan to try ice hockey. No doubt with that agreement came many stipulations. Stipulations that Ethan needed to listen to – and follow – very carefully!

In order for Ethan to play ice hockey, he needed to agree to having an increased dose of factor before ever stepping foot on the ice. He also needed to be infused as close to ice time as possible. In addition to that, he had to promise to let us know if he felt any pain or experienced any injury while on the ice. And if that were the case, we would meet again and re-evaluate Ethan’s ice hockey endeavor.

We tossed around so many options for Ethan to have the opportunity to play ice hockey in the safest way possible. In the end, we thought the safest, most practical, and most beneficial option would be to register Ethan for a hockey school/program. In September Ethan registered for, and began, the Delaney Hockey Program. Since then he has been skating once a week where he learns many skills, does drills, and works in a small-group setting with a private coach (even getting some one-on-one time). It has been an amazing experience so far! Ethan loves it and he has progressed so much in a few short months. His coaches have been nothing short of amazing, Ethan adores them, and we know we can reach out to them if we ever need to. And, as an added bonus, he doesn’t complain about getting his factor because he knows he cannot play hockey without it. He was even fortunate enough to play in a little two-day tournament with his friends over Christmas. It was the sweetest!

We know, as well as Ethan, that as times goes on and Ethan gets older we will have to reassess the whole hockey thing. As kids progress through divisions, it becomes more competitive, more serious, and unfortunately more rough! It’s inevitable. It happens and we cannot avoid it. But for now, we’ll take it one step at a time and let him enjoy the sport for what it is!

Who knows… with so many medical advancements, maybe we will be having a different conversation in a few years!

One can only hope.

So as if hockey wasn’t enough, Ethan wanted to join basketball in September too! Once again, we made sure to reach out to the coach beforehand, explained Ethan’s diagnosis, etc. He was really supportive, and has been great with Ethan. It is such an amazing program, and with such a small group the kids all play so well together and have learned so much! In September they were working on dribbling skills, and now they are having games of three-on-three. It’s pretty amazing to see how kids this young can be so passionate about a sport! Thankfully, this one has been pretty stress-free to date. We get to sit on the stage to watch (and cheer them on) as they play!

We just remind ourselves that the more active he is, the stronger his muscles will become, and the less risks there are of an injury (fingers crossed).

Through all of these new experiences, if nothing else, we have realized how accepting and understanding others can be. Over the past several months, we have encountered a number of new parents, teachers, coaches, classmates, and friends. It has been so emotional, and so amazing!


Boy have we been lucky… and blessed!

People are so intrigued and interested to learn more about Ethan. Yet at the same time, they accept him for who he is!

While they are cautious and careful, they treat him like everyone else. And that is what we want. We don’t want Ethan to be singled out. We don’t want Ethan to be treated any differently because of his Hemophilia.

Ethan has hemophilia… Hemophilia doesn’t have him. It doesn’t make him who he is; it is just a very small part of him.

Ethan is so much more than a boy with Hemophilia. I dare you to get to know him and try to convince me otherwise!   #hemomom



How to set limits?

Ever since Ethan was born, Peter and I thought setting limits for him as he grew would be a no-brainer… We thought sports would be off limit, and that would be that.

We thought it would come naturally and easily… But boy were we wrong!

Ethan’s four, and it hasn’t come easy.

And while you may be thinking, “he’s only four!”… He IS four. And four year old’s like to speak their mind – and that includes things he is interested in, and things he wants to try.


Ethan has expressed so much interest in athletics. He started with swimming when he was one and still LOVES it.

And by “loves it” I mean he’s a little fish!

He has reached the highest level he possibly can until he turns six. And even at the age of four, being “stuck” at that level is holding him back.


When he became busier and more energetic (as a toddler), he started a gym class at the local gym, but has learned to love that too! Then we signed him up for soccer when he was three (how dangerous could it be, really?). Then in January Ethan started Tae Kwon Do. We figured once he started sparring, he would have to call it quits… But he’s still going strong! We talked openly with his instructor about his bleeding disorder, and we have discussed options as he gets older and there’s more contact involved. We’ll take it one belt at a time.


He’s been asking, and asking, and ASKING to play ice hockey. But we’ve avoided it.

Every. Single. Time.

We know it really isn’t a good option, and that’s a hard lump to swallow. Peter grew up playing hockey… and still does play. Ethan knows that, and looks up to Peter on ice. We know Ethan’s “only four”, but he’s athletic. He’s interested in sports and usually does really well with them. If he were to play ice hockey, he may likely really enjoy it (he has enjoyed every other sport he’s tried so far). Heck, he may even excel at it. Unfortunately, this is something we may never know. Right now we’re told it’s too dangerous, and ultimately not worth the risk.

We’ve talked about options. We said that maybe next year when he’s old enough, he can try ball hockey to see how that goes. We don’t want to risk his safety and well-being, yet we don’t want to hold him back either. It’s so hard to find a happy medium. And no doubt it would be easier if he didn’t express an interest in sports.

But, for Ethan, that is not the case. He’s always going around with a mini-stick in his hands, kicking a soccer ball, or throwing a football or baseball.


How do you limit your severe hemophiliac child… who is naturally athletic? Or do you let them set their own limits? Do we let him try things – with the risk of potentially injuring himself – so he can see/decide for himself what is ok for him?

It hasn’t been easy.

And we know as he gets older things will get harder. The struggles will be bigger, and he will argue and defend himself more. And rightfully so. I hope he does! But, how do we set limits without hurting him? Without making him feel incompetent? Our biggest goal for Ethan is to ensure he feels the same as everyone else.

But, how do we guarantee that?



Four years of…

I’m not sure when it all happened… The teeny tiny baby boy we admired in the NICU without being able to snuggle or hold for days will soon be FOUR.

Four years of learning.
Four years of cautiousness.
Four years of being on edge.
Four years of worrying and stressing.
Four years of being extra cautious and safe.
Four years of advocating.
Four years of bumps and bruises.
Four years of bleeds.
Four years of hospital visits.
Four years of needles and treatments.

But because of these four years of needles and treatments, we’ve had…

Four years of “normal”… our normal.
Four years of letting him play.
Four years of complete craziness (it’s a good thing).
Four years of letting him learn for himself.
Four years of letting him be active.
Four years of letting him take risks.
Four years of letting him be a boy.
Four years of being blessed and thankful!

It has been an AMAZING four years and we cannot wait to see what the future has in store for our little superhero… yet at the same time, we wish that time would slow down!

He isn’t a baby any more. He stopped asking when he needs his “crazy juice” (factor) every day and just cooperates, complies, and gets it done.

Through all the ups and downs Ethan has been awesome, and his behaviour and attitude have been truly inspiring.

Lately he’s been asking questions. He asks why he needs to get treatment. He asks why he needs to wear a helmet at daycare. He asks why he can’t do certain things (because of safety).

While Ethan knows he has hemophilia and understands he is “special”, he doesn’t entirely understand why. For now we give him a “Coles Notes” version.

It tugs at my heartstrings when he passionately asks to play or do something we know deep down he is not safe doing.

I feel sad when he excitedly asks when he will get to play hockey. I just brush it off for now because I know he won’t truly understand.

Instead he’ll continue with swimming lessons, gym class, and tae kwon do.

While he is only four, Ethan seems to be a naturally athletic kid (he gets it from his Dad). He loves playing mini sticks hockey, soccer, running, tae kwon do, swimming, and pretty much any other physical activity he tries.

I feel bad that we have to limit him; that he cannot learn everything for himself. Some things are just not worth the risk… and some things are just not worth the heartache. I fear that if he learns to love something we may have to tell him down the road he can no longer play because it’s not safe.

I know there are worst things in life, and I know some people may think this is irrelevant… But these are things most parents and children take for granted!

For now, we’ll take things as they come and let him be a normal little boy. Ultimately, we’re just thankful that Ethan is healthy and happy. And that he is able to be active and participate in some safe, low-risk sports! After all, it is healthy for the growth and development of his joints and muscles.



2017 came in with a bang… Literally!

Although I have thought about it a dozen times, I haven’t taken the time to sit down and write an entry since the fall.

Since Christmas, I have sat down several times to write an entry only to be distracted with something else, pushing it aside for “another time”.

Life has been busy with two kids.

Not only did we expect it, we embrace it!

We try to spend as much time with the kids as possible, which means all other things get placed on the back burner. And we are totally ok with that! If you enter our house unexpectedly, you will see what I mean. The dirty dishes, laundry, and cleaning can wait!

While I had an amazing six months home with Ethan and Ellie, I returned to work after Christmas and they are now enjoying their days at home with Daddy. It has been an adjustment (for me more than anyone), but everyone is doing well with the change!


We had a wonderful Christmas, despite everyone being sick with head colds. It was nice and quiet. We enjoyed our time spent with family and friends. Ethan was so excited for Christmas this year. This was the first year he understood that Santa was coming and that he would deliver gifts on Christmas Eve while he was sleeping!

He was happy enough Christmas morning to see that he received his one and only request from Santa… A dinosaur and a “big egg” (aka a Kinder Surprise).

Santa delivered and Ethan was happy!

Some of you may have heard about Ethan’s trip to the Janeway New Year’s Eve. It was quite the ordeal.

We spent the evening at friends of my brother and sister-in-laws. It was nice and quiet. The adults sat around chatting while the kids played downstairs. Ethan trekked up and down the stairs at least twenty times, whether it be to show us a cool toy he discovered, have a snack, or to chase the older girls around.

Ethan is always so cautious and careful on stairs.

He usually stands to the side holding the rail carefully maneuvering down one step at a time.

Unfortunately this time one of his feet seemed to get caught up in the other, causing him to tumble down a flight of stairs. I heard the gasp coming from one of the Mom’s walking down behind him and instantly knew it was him. I jumped to my feet and managed to see him somersault down the last few stairs before he landed on his back at the bottom on a ceramic tile landing.

I let a scream out of me and I am sure everyone immediately jumped to their feet. They were all aware of Ethan’s condition, and a few of them passed comment about the danger of the stairs before he fell down them.

I don’t even remember handing Ellie over to one of the girls before I floated down the stairs to help Ethan.

He just laid there dazed and confused.

At that point, I was panic stricken and didn’t know if he was injured or just in complete shock. Thankfully there were a lot of people to help. My sister-in-law is a nurse, and my brother and a few of his good friends are firefighters and are first aid trained.

I was dying to scoop Ethan up in my arms and hold him while they checked him up and down. He just laid there shaken with blood gushing out of his mouth.

All his vitals appeared to be fine and he was very alert, but we had no idea whether or not he bumped his head when he fell. I immediately called the hematologist and we determined that he needed extra factor before making the trek to the Janeway emergency department to have him looked at right away.

The poor little guy cried when we left because he “didn’t want to leave the party” ha ha.

He was in good spirits, which certainly helped.

He was a trooper – as usual – getting his factor before we left for town, despite not having any Emla cream to numb the skin around his port.

We left for the hospital as soon as we could… Peter and I spent the entire drive in debating whether or not we should let him sleep in case he had a concussion.

After spending several hours at the Janeway, examinations and CT scans determined Ethan was completely fine and had no major bleeds. The only evidence of a fall was his bust up lip where his teeth went through and a burn on his face.

While we were beyond thankful everything came back normal, it was a scary night to say the least.

As crazy as Ethan is (and you ALL know how crazy he is, ha ha), this was his first major tumble. For days after all I could picture was his limp little body tumbling down the stairs.

I think everyone else at the party may have gotten an even bigger scare than Peter and I… I guess not entirely understanding Ethan’s condition and how his factor works makes a big difference.

But, at the end of the day we were just thankful he was ok, and thankful he had such amazing people to help look after him and make sure everything was alright.


So, as if NYE wasn’t eventful enough… Just after I returned back to work, Ethan was complaining of a pain in his side one afternoon and evening.

That’s not typical of Ethan; he’s a laid back, care free guy.

Peter and I paid close attention to it and when he kept favoring his side we decided to touch base with the hematologist to see how she felt. After asking us several questions about Ethan’s condition, she wanted us to treat him immediately and make a trip to the Janeway to have some tests done. She speculated he was having a muscle bleed in his side.

Flash back to a week and a half before… All that I could think was that maybe he was having an internal bleed or a muscle bleed from his tumble down the stairs.

So, after a good dose of factor off we went.

A few more hours waiting around, lots of tests, bloodwork, and ANOTHER CT scan, everything came back fine… AGAIN!


I think that’s about all my nerves can handle for a while, ha ha.

Knock on wood, nothing else ‘eventful’ has really happened since, other than a scattered mouth bleed and nose bleed.

Although, now that I think about it… LoL

To give you an idea of how Ethan bleeds here is a good, standard example.

We were on our way to Grammy and Poppa’s for supper one evening last week when Ethan was carrying a glass from the living room to put in the kitchen sink.

All of a sudden I heard the glass shatter.

When I looked Ethan was still holding it – well, most of it – in his hands.

There was glass all over the floor. We were right there with him, yet we have no idea how the glass broke.

I immediately took the rest of the glass from him and began to inspect his hand. He got a fright and started to cry, which definitely didn’t help with the bleeding. From the time it took to get from the living room to our bedroom (where we keep all of the medical supplies) the blood was gushing out of a few small cuts on his hand into my hand.

As fast as I could hold gauze to his hand and place bandaids over the cuts I would have to replace them again. He just kept bleeding through. Finally, I placed the gauze over his hand thick enough and taped it to form a ‘bandage’.

That seemed to do the trick, and off we went.

That night his hand was still bleeding – we were going on hour five. We knew that if things didn’t change by morning we would likely have to give him an extra dose of factor to help his blood clot, but thankfully that wasn’t the case. It finally stopped on its own. Yay!

These are just the little things that we sometimes don’t even think about. Because, for the most part, Ethan IS normal.

Things have been quiet since and we are ok with that!

Ethan still loves his little sister as much as ever… Maybe even more if that’s possible. Haha.


He is starting to wonder lately why Ellie doesn’t get ‘crazy juice’ (that’s what he calls his factor). We just tell him it’s because he is special and he needs it to play and be crazy, ha ha. He seems to be ok with that answer for now, so we’ll leave it at that!

Some days he tells us he doesn’t want to get his factor, but we just remind him if he wants to play safely he needs it. While it’s not something that happens every day (he is usually really good about it), he has yet to put up a fight.

No doubt his day will come.

But for now, we are enjoying the fact that he crawls up on the bed and lays back with his arms behind his head while we give him his treatment.

He’s pretty care-free.

The last handful of months we have switched from someone having to lay down with him (and sometimes still hold his arms still), to wanting to lay down all by himself.

He is getting more curious, asking more questions, and wanting to help more. Some days he wants to wear his ‘own gloves’ and help ‘push the button’ on the syringe.

Will we be so lucky for it to always be a positive experience for him?

I guess we will just have to take it as it comes…

Anyway, while this entry was LONG overdue, I just wanted to provide a little update on how things have been going lately.

Maybe in the next little while I will get a chance to write about things happening in Ethan’s life (and ours), rather than his tumbles, bleeds, an extra doses of factor… Fingers crossed!




It’s been a while… And a lot has changed!

It’s been a while… And a lot has changed!

I feel that while this summer was an eventful one, it has been pretty quiet and copacetic the same time. I made a little list of things I can think of offhand I want to talk about in this entry; I will see if I can cover all of them without being too long winded.

The Annual Hemophilia Walk took place on Sunday, May 29, 2016. We completed this walk with family and friends and had a great day despite the weather being so damp and cold! And I was even able to complete the entire walk/hike around Bowering Park while being37 weeks pregnant, ha ha. When we planned the date of the event as a group, we expected the weather to be a little warmer toward the end of May… However it was NOT!


With the help of family and friends, Ethan raised over $3000 for such an amazing, worthwhile cause! We celebrated after the walk with lots of food and friends to share it with at Gord and Jeannie’s house. It was a great turnout!

On Tuesday, June 28, 2016 (5 days overdue) baby Ellie finally made her big debut! I had a great delivery and everything went really well – including Ethan’s reaction to becoming a big brother and meeting his baby sister for the first time! It was instant love… And to this day he still loves and adores her SO much!


All he wants to do is hold her, snuggle her, and kiss her! I hope it stays that way, ha ha.

Ellie is happy and healthy. And for those of you who are unaware of how things will work for her genetically in regards to hemophilia, here’s a quick breakdown. Since I am a carrier of hemophilia and Peter does not have hemophilia, we are only passing along my affected gene… That means only our male children have a 50% chance of having hemophilia (i.e. there was a 50% chance that Ethan would have hemophilia).

Because of this, there was a 0% chance that Ellie would be born with hemophilia. But there IS a 50% chance that she will be a carrier of the hemophilia gene. This is not something we see necessary to have tested. There may come a day that she wants to find out on her own… So, for now we will leave it at that.


Having a toddler and a baby has been a HUGE adjustment – very challenging at times, even. But, we are getting into a really good routine now. The first month was the hardest. But, now that Ellie is getting into a more consistent feeding and napping schedule, I can maneuver around and venture out a little more, ha ha. We have even made a handful of trips to St. John’s for the day and took both of them to a movie!

Most of our summer consisted of getting Ethan to swimming lessons every day. After that, anything else was just an added bonus, ha ha. Since swimming is such a great activity for Ethan’s joints and muscles, we enrolled him in swimming lessons for the entire summer. He swam Monday to Thursday (for eight weeks) at the pool in Bay Robert’s and loved every minute of it. We are glad he loves the water so much and we hope it is something he continues to enjoy as he gets older.

Now that the pool is closed in Bay Roberts (it’s only open during the summer months), he is back to swimming on the weekends in Carbonear where he will take lessons all fall and winter.

We were so disappointed we missed Hemophlia Camp this summer, but during the time of registration we weren’t sure when Ellie was going to arrive or how well I would feel after having a baby. I was due June 23rd, and Hemophilia Camp was scheduled to take place July 7th to July 10th. If we had known, we would have went for sure! It was unfortunate that we didn’t get there because Ethan would have had a blast. We really missed not seeing all of our hemophilia friends, but that just gives us more of a reason to look forward to camp next year!

Toward the end of April we learned that Advate (which is the factor replacement drug Ethan has been on since birth) would no longer be carried/funded by Canadian Blood Services. Because of this, it would no longer be available to patients in Newfoundland. This meant that we would have to sit down with Ethan’s hematologist and weigh out the options for switching Ethan to a different brand of factor replacement drug.

At the time we knew there was an option for a longer lasting factor, which we thought was an automatic ‘no-brainer’. However one big downfall was that it was fairly new out and doctors were still ironing out the kinks and playing around with doses to optimize its function for pediatric patients. Because Advate was working well for Ethan and for our routine, we opted to stay with a drug that has the same half-life and the same functionality. As time goes on, we can switch Ethan to the longer lasting factor if we want, but this is working for us for now. One plus of keeping him on the same schedule is that he has more frequent treatments, which means his levels peak more often. This may be beneficial as he gets older if he is involved in any sports of physical activities.

This fall Ethan started a new day care. It wasn’t much of an adjustment for him because he was used to going to day care already… It was just getting used to new faces and making new friends. He loves it though, and he goes there every day with a smile on his face. I sometimes worry because he is much more independent now and he likes to explore and try new things… Which is very normal for a child his age, I might add. And while we LOVE that about him, there is always a worry in the back of my mind that he may do something that will result in an injury. However, thankfully right now he goes to day care Monday, Wednesday, and Friday and those are his treatment days! This means he can explore a little more freely since his factor levels are a little higher those days. Pheww!


Something new that Ethan participates in this fall is a regular class at a children’s gym called Gyminee Crickets. I was a little unsure as to how ‘safe’ this would be for Ethan, but we thought we would give it a try. I mentioned it to Ethan’s hematologist and physiotherapist and they both were in agreement that it was a great idea. While I have to watch him carefully, it gives him the opportunity to build and strengthen his muscles which is great! Once a week (and sometimes twice) he attends the gym where he can jump, play, and explore with his little friends. The place has balance beams, trampolines, monkey bars, ramps to tumble, balls to bounce on, walls to climb, etc. It is a great place for kids to burn off some energy…

And we all know Ethan has LOTS of energy, ha ha.

Sometimes I wonder if he should be wearing his soft helmet when he plays there, but then I know I am close behind him… And part of me likes for him to know his limits and learn what he can and cannot do safety without it.

I tell myself – for reassurance – he has to learn somehow!


Wednesday, September 21st was Ethan’s visit to the Hemophilia Clinic. He used to visit four times a year but has been doing so well that he only needs to go twice a year now (unless something comes up). Both the physiotherapist and hematologist were really pleased with how well he is doing and how active he is… Not to mention how they got to see and experience firsthand how crazy he really is! Ha ha.


While it was an eventful summer, Ethan hasn’t had any injuries of bleeds (knock on wood). As crazy as he is, he is usually fairly cautious and careful… And for times that he is not, we are thankful he has his father’s strength and his mother’s coordination. Ha ha. For all those times he jumps off the couch and the bed (pretending to be Captain America), he usually lands on his feet… Thank goodness!




March is Hemophilia Awareness Month


March is Hemophilia Awareness Month… I feel like since Ethan was diagnosed, Peter and I have worked extremely hard to advocate for him while educating others about this rare (and severe) bleeding condition.

Many, many, MANY people have approached us and thanked us for helping them learn about Ethan’s condition – many people who had absolutely no idea what hemophilia was until they met Ethan!

If you have had the joy of meeting this amazing little boy of ours, he has a personality you will not soon forget! He is the perfect amount of crazy, energetic, rambunctious, sweet, loving, caring, and affectionate all wrapped up in ONE perfect little boy.

Peter and I quickly learned there are many misconceptions associated with hemophilia. Because of this we like to steer people in the right direction and ensure they are well informed. In 22 months we have learned so much about hemophilia. But, what was once so overwhelming to us quickly became second nature. To this day people still cannot get over how calm and laid back we are about Ethan’s condition. We just assure them this is our life – This is our ‘normal’… We don’t know any different.

And if you know Ethan, you can easily vouch for how ‘normal’ he REALLY is. I guarantee you he is no different than ANY other 22-month-old.

For curiosity sake, how many of you feel as though you knew nothing (or next to nothing) about hemophilia prior to meeting Ethan or becoming aware of his story?

Please feel free to share your comments.

Thanks, Kerilynn





ONE YEAR… This calls for a new entry! :)

It was exactly one year ago today that Ethan had his port surgery. At about this time, Ethan wasn’t long back from the recovery room… Likely still snuggling in my arms!


I can’t believe the difference Ethan’s port has made to the quality of his life – and ours!

We have a routine; and a good one at that!

Like I’ve said a thousand times before, this has become our normal… In fact, it’s ALL we know!

In between morning showers, getting dressed for day care, eating breakfast, and packing lunches we take ten or fifteen minutes out of our morning to access Ethan’s port so he can have his dosage of Advate (Factor VIII replacement). This happens three times a week in the comfort of our own home.

And while it may sound like an inconvenience to some of you, it is NOT.

It’s not an inconvenience when you can see how ‘normal’ it lets him be.

We are so blessed to be able to provide Ethan treatment from home rather than having to rely on a doctor to do this.

In ONE year, Ethan has had 158 infusions at home!

That would mean 158 trips to the doctor.

Because we were given this option, Ethan can run and play like any other 21-month-old.

Ethan dances on the kitchen table and jumps off the couch on a daily basis. This winter Ethan tried sliding and skating for the first time (and it certainly won’t be his last) and had his first ride on his Daddy’s ATV.

If it weren’t for Ethan’s treatment, we wouldn’t feel comfortable and confidant in letting him do these things! It really is a blessing.


Some people ask how we do it… Some people ask how we feel about poking him with a needle every other day. A year ago I didn’t know how to answer that. A year ago I didn’t know how I would ever build up the nerve to poke my own baby with a needle… But after realizing how much it benefits him and helps him, my thoughts are: “SO WHAT!”


We quickly realized things can be so much worse.

We would do this every day if it meant Ethan living a ‘normal’ life being able to do all the crazy things toddlers love to do without risking his health and safety… Or our sanity, ha ha!



Pretty self-explanatory… ;)


Ethan has some VERY exciting news to share… And we are all sooo happy!

He will be THE BEST big brother.

While it may seem so simple and straightforward to think “Oh, Ethan is going to have a little brother or sister”, it is so much more than that to us.

There is so much to think about.

There is so much to talk about.

And there is so much to plan.

Over the next five months (yes, I am FOUR months already) we will seek advice from various medical professionals as we make a birth plan for baby #2.

We will keep you updated with how things go, the genetic breakdown of things, etc.

Wish us luck!


Another amazing Christmas for the books…

Another amazing Christmas for the books…

Well, what can I say? This Christmas was nothing short of wonderful!

It was nice and quiet; which was absolutely PERFECT.

We loved the down time, time spent with family, tons of yummy food, and lots and LOTS of playing with cars and trucks… In between all the snuggles on the couch watching Curious George, of course!


Ethan was even ‘somewhat’ laid back – which is totally out of the ordinary for him (ha ha).

Despite it being Christmas holidays we kept with our usual factor routine, which meant an infusion Christmas morning before all the excitement began emptying stockings and unwrapping a copious amount of gifts.

Thankfully, Ethan didn’t seem to mind.


Since we knew Christmas was going to be crazy – and Ethan would be too – we took precautionary measures and gave him a little extra factor ‘just in case’. We are thankful we did, because he took a few bumps and bangs with all the running around and jumping off things he did.

Luckily, nothing major happened.

A few small bruises and a fat lip… Nothing a cherry popsicle and some cyklokapron couldn’t fix!

Aside from that, our Christmas break was ‘normal’ and nothing out of the ordinary in the way of Ethan’s hemophilia.

We are still convinced the factor makes him crazy! He is still the craziest, silliest, most high-energy toddler we have EVER met!

Everything Ethan does is for a joke. He is constantly running around doing dare-devil things with this evil grin on his face which is quickly followed by a mischievous chuckle. All we do is shake our heads and laugh – because he is still so awfully cute!

In spite of his craziness, he is steady on his feet and not as clumsy as most toddlers seem to be. He can maneuver on and off a queen size bed or a kitchen table quite effortlessly. It still amazes me the things he can do… Or should I say, the things he is willing to do!


He is a boy that has no fear!

Backtracking a little, Ethan’s clinic appointment with the hemophilia team in December went super!

The hematologist was really pleased at how well he has been doing and how well his factor (which is a genetically engineered factor eight replacement) routine is working for him. The physiotherapist was really happy as well; no issues with any of Ethan’s muscles or joints and he clearly has no mobility issues!


Over the past several months, Ethan has had numerous bouts of bloodwork done at different times during the day (both before and after he received factor) so they could chart his factor eight levels, see how fast he metabolizes the factor, etc.

While his dosage hasn’t changed for quite some time, they decided to keep it as it is for now. The fact that Ethan receives his factor in the morning works well for him, since he is awake during the time his levels reach their highest.

The factor he receives has a half-life of twelve hours, so his levels decrease by 50% twelve hours after he is medicated. This is usually a time where Ethan sleeps, which certainly works in his favor.

During the end of the second day when his levels are at their absolute lowest (before receiving his next dose), he is sleeping once again. This has drastically cut down on his number of bumps, bruises, and bleeds.

Peter and I are thankful we made Ethan’s factor routine a part of our daily routine. We tweaked our morning schedule to make it work, and we are glad we did. Now it is second nature to us. It is obviously paying off… And hopefully it continues to work that way!

According to Ethan’s bloodwork, his levels are only below 1% for 1.5 to 2 hours, and his levels are only below 2% for approximately nine hours. Unless something out of the ordinary happens, because of our morning factor routine Ethan’s levels will always be at their lowest when he is sleeping (and doesn’t ‘need’ the factor then, per se).

Fingers crossed that things continue to go so smoothly in the New Year…

Wishing you all the best in 2016!


Kerilynn, Peter, and Ethan (and Ovie too, of course)


For someone that should be laid back, careful, and cautious… He is NOT.

Once again, it’s been a while since I last wrote… An up-to-date blog entry is loooong overdue!

My life has been consumed by a rambunctious toddler, my family, AND work – but I wouldn’t change a thing!

While it’s so easy to drown in the crazy, busy lives that we all choose to live, I make sure I always have time to devote to Ethan and Peter (and Ovie too, of course). If all I do at the end of a work day is spend time with them, then I go to bed a happy Mommy and wife!


At the end of the day, they’re what matters the most. And while Ethan’s diagnosis has been fairly positive so far – despite a few bumps in the road – it has certainly made me re-evaluate my life and has changed my perspective on things. It has made me appreciate my family that much more (not that I didn’t already appreciate them).


While Ethan’s energy level has certainly increased and he has become much more active, exploratory and ‘crazy’ (as we like to call it), his hemophilia has been very agreeable.

Knock on wood.

He has had no unusual bumps, bruises, or bleeds, and nothing that required extra treatment.

For that, we are thankful!

We have certainly been able to count our blessings with how fortunate we have been with Ethan’s hemophilia thus far.

Ethan has grown and developed so much in the last few months, but his dosage of Advate remains the same. Well, for now anyway.

He recently had some bloodwork done and while his pre-treatment levels were not optimal, his dosage has not yet been increased. Right now, before Ethan receives his treatment on Wednesday and Friday (i.e. after a two day gap between treatments), his levels are back down to 1%. And he has an even longer gap between his Friday and Monday treatment. Ideally, the hematologist would like Ethan’s levels to be anywhere above 2% when he receives his dose of factor. So, this is likely something they will tweak in the near future.

Ethan will see the hematologist for his routine check-up (which happens every three months) in December, so things may be adjusted then. We are expecting it – and also kind of hoping for it – since he is such an active little boy!

Until then, I’m sure he will continue to be the energetic, dare-devil self that he is!

For someone that should be laid back, careful, and cautious… He is NOT.

He is active. He is rough. He is rowdy. He is verrry high energy. And he is downright ‘crazy’.

But, that’s who he is and we certainly love him for that!

We would be worried if a day went by where Ethan wasn’t climbing on the kitchen table or hanging from the kitchen cupboards. It wouldn’t be a ‘normal’ day at our house if Ethan didn’t try to jump off our bed or climb onto his change table all by himself.

This IS who he is! And, not only have we accepted it… We have embraced it!

Aside from Ethan’s hemophilia, we are amazed at how quickly he has grown and how much he has learned in the last few months.













He has become this independent little boy who loves to do things on his own.

There’s not a day that goes by that we aren’t amazed at the list of things he is able to say, do, or ask for.

It truly is amazing how quickly he has grown.












As Christmas gets closer, I look forward to spending another amazing year with Ethan. Peter and I are always chatting and laughing about what this Christmas will be like; wondering how quickly Ethan will dismantle our Christmas tree… BUT, we don’t care!

As long as we get to spend another Christmas together creating wonderful memories, we will be happy!

We will be sure to post lots of photos – and updates – of how our Christmas goes… And how he handles the tree! It might be interesting, ha ha.