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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!

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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.

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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!

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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!

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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!

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

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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!

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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).

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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.

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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.

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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.

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Kerilynn

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Back into the swing of things

The last few weeks have been hectic.

After spending the entire summer home with Ethan and enjoying many of those days doing nothing other than playing with dump trucks and backhoes, we are back to reality.

Back to the reality of 6:30am wake up calls.

Back to the reality of working Monday to Friday.

Back to the reality of dropping Ethan off and picking him up at day care EVERY. SINGLE. DAY.

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And, back to the reality of trying to squeeze in as much play time and snuggles as we can between 3:30pm and 8:00pm, ALL while juggling routine things like factor days, cooking meals, cleaning the house, and bath time.

While I really enjoyed having two full months home with Ethan, I have to admit there is something nice about having a routine. I feel like a busy day at work makes me appreciate time spent with him during the evening that much more.

I love leaving work and going to day care to see his excited little face when he notices me peering in through the door at him.

I love when he excitedly runs over and shouts “HI!” as soon as he sees me!

If I am having a ‘not-so-great’ day, he ALWAYS makes it better.

Ethan’s hemophilia has been quite agreeable lately, despite his daredevil ways!

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While he loves to walk right off the edge of the couch, climb on top of the kitchen table, stand on top of the biggest truck he has, and attempt to go down the slide while standing, there have been absolutely no bleeding episodes or extra doses of factor… Knock on wood!

He has had some extra bumps and bruises, and even a few minor cuts and scrapes – but nothing out of the ordinary. Nothing that would cause him to stand out from any other 17-month-old. Pheww!

He’s a typical toddler who loves to explore and test the limits.

People always look at me and Peter and say, “Oh my goodness, your nerves must be gone!” or “You must be some nervous with him!”

Our response is usually, “No, not really.”

Peter and I often say we don’t think we are any more cautious with Ethan than we would be with a non-hemophiliac child. While it took us some time to get a feel for things, we usually have a good sense of what Ethan’s limits are and make good judgment as to what is safe and unsafe for him. We know that if he falls and cuts himself it isn’t the end of the world. And if he bumps his chin, knee, or elbow on something while playing, it’s nothing an ice pack and extra dose of factor won’t fix if need be.

While others may look at our lives and feel differently, Ethan is normal to us.

Other than the factor he receives three times a week, we have quickly learned that he really is no different than any other toddler.

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Yes, it’s ok if he falls and cuts his knees or scrapes his hands.

Yes, it’s ok for him go down the slide by himself.

Yes, it’s ok for him to go on the bouncy castle.

Yes, it’s ok for him to play with the big kids at the playground.

Yes, it IS ok, and he WILL BE ok.

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We recently bought Ethan his first pair of hockey skates. And, we have full intentions of taking him to the stadium from time to time to see if he may be interested in learning to skate.

While you may think we are crazy, we have decided this will be a part of our life. Ultimately, it was our decision. We know Ethan’s limits and we know not to push him. If it’s something he enjoys, we will let him pursue it – while being completely safe about it of course. We will take precautions, and down the road if it is something he learns to love it may eventually require extra factor before stepping onto the ice. But to us, that is a part of Ethan’s ‘normal’ and ensuring he doesn’t feel left out.

In the end we want to ensure Ethan doesn’t feel restricted or limited because of his hemophilia.

At this rate, we know that he won’t.

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The factor makes him crazy! ;)

As Moms of most – or ALL – sixteen-month-olds know, life is anything but boring at this stage… Especially life with little boys! They run, climb, jump, throw stuff, and are just NON-STOP from the time they wake in the morning until they go to sleep at night.

Ethan even tosses and turns covering every square inch of his crib while sleeping, for goodness sake!

Life around here is anything but boring or quiet.

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Peter and I swear the ‘factor’ makes Ethan crazy. He is seriously just the silliest, goofiest, most high-energy little boy I have EVER met… And I am not even exaggerating.

Not even a LITTLE BIT!

I mean, of course he is… He has hemophilia!

I feel like those two things go hand in hand. It seems like most Moms of hemophiliacs agree – their boys are crazy, fearless, little daredevils.

And Ethan certainly fits the bill!

I recently stumbled upon a post in a Hemophilia Mothers group, where a Mom of a one-year-old was wondering if anyone else had experience with their boys getting into everything… And then the comments, stories, and photos began to pour in. I guess it’s nice to know we are not alone, ha ha.

I feel like in time I will be THAT Mom – the one with all the stories and photos of Ethan doing ‘daredevil’ things.

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From the time he’s been able to stand he’s been climbing onto laundry baskets, trucks, his rocking horse, the bed, the couch, etc. I even found him teetering over the top of the couch one morning when I went into his room to grab a clean diaper for him. If I were a second longer I am sure he would have jumped.

When I came around the corner and seen him, I tried not to let him know I had panicked. I was trying to scurry toward him without giving him a fright. Thankfully he just stayed there laughing at me (he’s so evil… but in a cute way, of course) until I could grab him and take him down.

Pheww!

He makes my heart race… And occasionally I am sure it even skips a beat or two!

But, I wouldn’t change a thing for the world.

As goofy and fearless as he is (he laughs at everything while he’s doing it… It’s like he knows he’s up to no good), it is who he is. It’s his personality.

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And while we’ve been fortunate with minimal bumps, bruises, and bleeds… I am sure there will be times where we will not be as fortunate. But, it is all a part of the learning process.

With time Ethan will learn what he can and cannot do.

He will learn what is safe versus what is unsafe.

He will learn what is worth the risk and what is not.

He will learn what may hurt him and cause him pain.

And, he will learn to make these decisions on his own.

But for now he is still exploring… And that’s where WE come into play. Over the last few months, we have learned that we cannot take our eyes off Ethan for a second. What may be a bad tumble or fall for a ‘normal’ child can potentially mean so much more than that for Ethan. It can mean extra factor, a trip to the emergency room, a stay at the hospital, or even a serious injury or bleed.

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Hopefully it doesn’t come to that. But, we also need to let him explore. We try not to hold his hand while he is exploring around the house or playing outside. We try to let him do as much on his own as we can. It’s good for him! That’s why we take precautions now and try to do what we can to protect Ethan and ‘toddler-proof’ our house.

Our living room floor is still completely covered in foam mats (and pool noodles). While he explores the rest of the house on a regular basis now, this is where he plays and spends most of his time. We have a gate on our patio so he can safely play with his water table, outside toys, and play house under the supervision of myself or Peter.

We are also in the process of building a giant play area for Ethan outside. We just roped off a 28×40 area on our lawn that we will fence in for safe play. The ground inside Ethan’s play area will also be completely covered with rubber to help absorb the shock if Ethan – or anyone else for that matter – were to fall off one of the play sets, slides, swings, etc.

Ethan LOVES to be outside!

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We are really excited to get this finished so Ethan can have a play area to call his own. A place where he can be safe and play outside with his toys just like any of his little friends… And be his crazy, silly, little daredevil self – Well to a certain extent, ha ha!

And when the play yard is complete, all are welcome to stop by and enjoy it with Ethan!

We will keep you up to date with some progress pictures.

Kerilynn

 

 

 

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It’s been a while…

Despite the absolutely horrid weather we have been having this summer (with the exception of the last few days), we have been kept SUPER busy! Ethan has been taking swimming lessons four days a week and we’ve been running around trying to take in some activities – going for walks, out for lunch, spending time with Ethan’s little friends, trips to town, hemophilia camp, and we can’t forget our trip to FLORIDA!

It has been an eventful summer to say the least!

I feel like I have so much to talk about that I don’t know where to start. Our summer began with hemophilia camp the first weekend in July. It was a great time with lots of fun activities for the kids along with tons of information sessions for us to take in. It really was great!

It was wonderful to meet new people from the bleeding community and spend time chatting with them. The kids were amazing, and they were great with Ethan.

I think it’s safe to say he stole the hearts of a lot of people at camp!

This year I was nominated for the position of Director of Fundraising for the NL Hemophilia Society, and I graciously accepted the position. It will definitely be nice to have an active role as a board member and become more involved in the community. I’m looking forward to a great year!

Thankfully in the way of bleeds, there have been very minimal incidents – which is great!

Ethan is such an active, busy little boy. From the moment his wakes in the morning until he goes to bed at night he is seriously NON STOP!

We cannot take our eyes off him for two seconds.

There have been a few minor bumps and bangs that we have treated with extra factor just to be precautionary.

Then, there was the day Ethan fell and bit his tongue…

WHAT. A. MESS.

It happened around 8:30 in the morning; Peter had just left for work. Ethan was running over to look out the living room window (I was sat on the floor right behind him) when he slipped and banged his chin off the window ledge. He must have had his tongue out while he was running and bit it really bad. Instantly he was covered in blood and it was dripping out of his mouth everywhere. What a fright I got! I heard the bang and seen him slip, so I immediately knew it was bad!

I quickly scooped him up to take him to the fridge to get an ice pack for him. I tried to get him to chew on that and suck on a cold cloth but he just was not interested. Popsicles followed soon after… And while he was enjoying the taste – and the mess – it just didn’t help! I called Peter to tell him we would need to give Ethan extra factor and popped him in the tub to quickly clean him up.

Even after the extra factor the bleeding had not subsided at all. We went through four or five changes of clothing as well as an endless amount of face clothes!

After talking to the doctor on the phone, he was just concerned that if the bleeding didn’t stop by the next morning Ethan may need stitches in his tongue – he had quite the gash there.

Luckily after a trip to St. John’s to pick up some cyklokapron (which is used to help elevate mouth bleeds) and let the doctor have a quick look at it, it finally started to stop.

Thankfully, that was our only run in with needing extra factor so far this summer… Hopefully it stays that way – fingers crossed!

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We just got back from our trip to Florida; what an amazing time we had!

It was amazing. Ethan got to meet Mickey, Minnie, Daisy, Donald, and Goofy. He loved them! We went to Magic Kingdom and Sea World and had the opportunity to go on numerous rides and take in various shows. It was a great time.

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I think Ethan’s favorite part was swimming at the pool. Every time we walked by the pool he would cry to go in, ha ha. We made it a point to go there two or three times every day. It was so much fun! He’s a little fishy, that’s for sure!

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This was our first time traveling with Ethan’s factor and all of his supplies. As organized as we were, and while we made sure we had everything documented with letters from his doctor, we were still nervous.

We had no idea what to expect.

But, we had a really good first experience. No one asked us any questions and we didn’t have any trouble getting through security with his carry on full of factor and supplies, ha ha. They didn’t even ask to see the letter from our doctor – we were both very surprised.

We had an amazing trip and Ethan was a super traveller – I just can’t believe after all the days of planning and counting down it’s OVER.

We’ll definitely plan another for next year if all goes well.

Kerilynn

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It has been a busy – but fun-filled – month of May! :)

The first thing I want to do is apologize for not writing sooner. In the last few weeks I have found myself sitting down numerous times to begin an entry only to get side tracked with something else.

While I found it difficult to return to work after being off all winter, Peter recently returned after being on parental leave for the past EIGHT months and it has been a huge adjustment for ALL of us.

Although it has been a very eventful spring so far, it’s been a ‘quiet’ one at the same time. We’ve been busy with work, daycare visits, planning Ethan’s first birthday, swimming lessons, birthday parties, social events, fundraising events, baking shortbread cookies for the annual hemophilia walk (52 dozen to be exact), routine bloodwork, and just living life as normal. BUT, it’s been quite in the way of bumps, bruises, and bleeds.

Last week has been the first bump of any sort in a while… Hopefully it stays that way (knock on wood). Ethan and I were looking out the living room window early last Monday morning just watching the cars go by when he slipped and hit his face off the window ledge. It instantly turned purple and he had a big bruise right across his cheek. It is only now starting to clear up. Thankfully it didn’t get any worse and didn’t require any extra treatment.

Since returning back to work a little over a month ago we’ve got into a great routine of infusing Ethan before he heads off to daycare. It just requires a little more work than normal on our behalf. Instead of getting up at the usual 6:40am, I now wake at 6:00am to get myself ready and prepare Ethan’s supplies for the morning. It has been working really well. Everyone is up, washed, dressed, fed, and out the door by 8:00am.

Ethan is really settling into the routine of his at-home infusions and usually doesn’t even wiggle or squirm! He pretty much just lays there and babbles while we do all the work… Although some days require a lot of singing, ha ha. But, he IS making great progress.

After Ethan had some blood work done about six or seven weeks ago, his dosage of Advate was doubled on a regular basis because his levels weren’t as high as they had anticipated after his treatment.

We returned to the Janeway this past Wednesday to have some more blood work done to check his pre and post levels. Hopefully his levels have increased since he now receives a higher dose of Advate.

This past weekend was a busy one – And our FIRST weekend away from Ethan, I might add.

Peter and I were invited (by the NL Hemophilia Chapter) to attend the Canadian Hemophilia Society’s “2015 Rendez-Vous” in Halifax for the weekend. The conference explored state-of-the-art advances in treatment and research benefiting people with bleeding disorders such as hemophilia. Peter and I had the opportunity to meet with other parents, patients, medical professionals, and board members to hear about their experiences with hemophilia. It was a great experience and a very enjoyable weekend to say the least.

While we really missed Ethan and wanted to take him with us, we knew he was fine at home in the care of Nana, Poppy, Grammy, and Poppa.

It was just like shift work for the grandparents, ha ha. Nana and Poppy were on babysitting duty Friday night and Saturday, while Grammy and Poppa started their shift Saturday evening and stayed with him until we returned home today. They all had a great weekend… But I am pretty sure it’s safe to say they will all be in bed early tonight!

Aside from being really busy, things have been going wonderful – the weather is finally starting to warm up a little and Ethan and I have been enjoying our evenings outside playing and taking Ovie for walks.

Ethan is really settling in to daycare and enjoys seeing his little friends every morning. The daycare workers are wonderful too, so that certainly helps! He doesn’t even cry when we drop him off now – a BIG breakthrough from his first few weeks.

We are all really looking forward to summer break, though! It will be nice to have some time away from school, work, and daycare. We plan on spending lots of time outside playing, going for lots of bike rides and walks, and attending LOTS of swimming lessons. While Ethan has participated in weekly lessons at the Carbonear Swimming Pool for the last 10 or 12 weeks, tomorrow he will begin sessions at the Bay Robert’s Swimming Pool as well! Now instead of just swimming once a week, he will swim FIVE times a week… Monday to Thursday in Bay Roberts and Saturday in Carbonear. Oh boy, it’s going to be a busy summer but we are ready for it!

Before I head off to clean up from the weekend, I want to remind everyone about the Pfizer “Take a Helpful Break” contest we entered Ethan in. Voting ends tomorrow (Monday, June 1st) at 11:59pm. In case you aren’t aware, we had to provide a photo or video of Ethan taking a ‘helpful break’ for the entry. You can access the link to the contest on our Facebook group or in my previous blog post. Since we have been heavily involved in volunteer work and fundraising since Ethan was born, I compiled a video of photos from different fundraising events Ethan has participated in (with myself and Peter). If Ethan wins, he will receive a $3000 prize for a personal improvement project of his choice as well as $5000 for the Newfoundland & Labrador Hemophilia Society. Please keep voting – and sharing – and wish us luck. The winner will be announced on Tuesday, June 2nd. Very exciting!

Anyway, I am off. Hopefully I will get a chance to write again real soon.

Take care and thanks for reading,

Kerilynn

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Ethan’s Entry in the “Take a Helpful Break” Contest by Pfizer

We recently entered Ethan in the “Take a Helpful Break” Contest by Pfizer.

Here is a link to Ethan’s contest entry: http://bit.ly/1dfu3Pw

PLEASE SHARE! Please click the link below and take a minute to vote for Ethan’s video! You can vote EVERY DAY (with one entry per day) until June 1st. If Ethan wins, he will receive a $3000 prize as well as $5000 for the Newfoundland & Labrador Hemophilia Society.

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“No act of kindness, no matter how small, is ever wasted.” – Aesop

April 17 was World Hemophilia Day and the Canadian Hemophilia Society decided to host a contest: “Take a Helpful Break” from Pfizer. As an entry for the contest, I created a video to demonstrate what a helpful break means to Ethan.

“My name is Ethan Mercer and I have severe Hemophilia A. I was diagnosed with Hemophilia when I was born. Now I am ONE year old and I live a very healthy, active, ‘normal’ life. I had surgery to have a port-a-cath inserted when I was ten months old so my Mommy and Daddy could give me treatment from home. When I am not busy playing with Mommy, Daddy, and my puppy Ovie, I love to play with my friends, show lots of love and support for others, and help fundraise for different charities and organizations. So many people helped me when I was sick; now I love to do things to return the favor and express my sincere thanks and appreciation!”