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!

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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!

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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.

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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!

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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!

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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.

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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

 

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