0

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.

blog6

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.

blog3

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.

blog7

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.

blog9

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?

blog8

Advertisements
1

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.

Image

0

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!

dsc_0234

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.

dsc_0535

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!

Phewww.

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.

dsc_0521

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!

Kerilynn

dsc_0528

0

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!

dsc_03632

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!

dsc_0583

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.

pic1-g2ft

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!

dsc_0987

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!

dsc_0026

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.

dsc_0992

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!

Kerilynn

 

1

March is Hemophilia Awareness Month

21months

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

ham_email2

hemo007

 

3

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!

10994849_10155147578070405_1305124994_n

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.

DSC_0611

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!”

DSC_0604

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!

Kerilynn

Image
3

Pretty self-explanatory… ;)

Sign_for_Ethan(1)

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!