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Tomorrow we will have a one year old… Oh boy!

So, tomorrow we will have a one year old.

One. Year. Old.

Oh boy!

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I’m really not sure where the last year went! We have had a lot of ups and downs – thankfully the ups have far, far, far outweighed the downs. And, when I look back on all that we have been through as a family, I wouldn’t change a single thing!

It has made us stronger, more caring, more passionate, and more loving. It has brought us closer together as a family… If that was at all possible!

A year ago today Peter and I spent our morning at the hospital waiting for me to be induced. After things got underway, we continued our day as normal, went for lunch together, came home to relax, and just WAIT for our precious little boy to arrive.

We were both so excited… and nervous!

At that time we had no idea what the next two weeks would have in store for us.

The biggest joy of our life, along with the biggest scare of our life.

We were blessed with a miracle that we had no idea would spend the next two weeks in the NICU undergoing blood transfusions, countless tests and scans, around-the-clock care, and days of intense treatment.

To this day whenever I drive past an ambulance, it takes me back to the day Ethan was transferred to the Janeway.

I still get a chill when I think about our drive to town that day.

It is still so vivid, yet it’s a complete blur. At the time I didn’t understand the extent of Ethan’s bleed… and I certainly didn’t realize how close we came to losing him. Thankfully things worked out and he is a happy, healthy one-year-old.

I often think back on those two weeks and realize how lucky we truly are. I know everything happens for a reason, and God certainly had a plan for us. Ethan was – and still is – such a strong, resilient little boy. He was able to pull through everything and turn out to be a completely ‘normal’ little boy… Only with severe Hemophilia. From one day to the next, we really didn’t know what the outcome would be. We spent hours upon hours holding him, rocking him, feeding him, talking to him, and just being there for him.

When I look back on our time spent in the NICU, I can’t believe it was a year ago – while at the same time it still feels like yesterday.

So much has happened in the past year and Ethan has bought so much joy and happiness to our lives. We have been through so much as a family and we have experienced so much together. We have watched him grow and develop into a very smart, busy, active little boy who loves to play, climb, and explore! He is such a sweet boy with so much personality and we adore that about him.

We’ve have had many firsts: His first word and his first bruise… His first time feeding himself and his first hospital stay… His first time crawling and his first infusion… His first tooth and his first surgery… The list of firsts go on, and it’s amazing how much one little boy can learn (and overcome) in a year!

We have made so many memories as a family – memories that we will hold dear in our hearts and cherish forever. I cannot wait for another amazing year of making even more memories!

We have learned so much from Ethan and his hemophilia.

Over the past year, we have learned to enjoy every moment and to not take life for granted. Ethan’s hemophilia has undoubtedly taught us to enjoy the little things, and not to stress over petty, irrelevant things. Although I have recently returned to work, I enjoy every moment I have with Ethan. I have learned to make the most of the time we have together.

The last few weeks have been spent with copious amounts of party planning and preparations. Ethan will celebrate his first birthday party with all of his family and friends on Saturday doing what he loves to do… SWIM!

It’s Ethan’s special day, so we decided it would be ALL about him with the things he loves the most.

Pizza for lunch, of course!

We have also been busy making Mickey Mouse decorations (he adores Mickey Mouse), stuffing Mickey Mouse loot bags, and preparing his favorite treats. We will spend the entire day celebrating a very special little boy.

It’s bitter sweet, that’s for sure. While I love to see him thrive and grow, I cannot believe how quickly the last twelve months have passed by. I know it’s cliché to say, but it seems like only yesterday we were waiting for him to be born.

I will be sure to share some photos of his first birthday.

Hopefully the next year will be filled with as much fun, laughter, and love as this year!

Kerilynn

 

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It’s been an emotional day! #lightitupred #hemophiliaawareness #worldhemophiliaday

I haven’t taken the time to write an entry in a while. Since finishing my Masters of Education program, I spent the last four weeks of my leave taking advantage of some well-deserved (and well-enjoyed) time with my family… It has been amazing!

The last four months have gone by in the blink of an eye and I cannot believe I return to work on Monday. While I am looking forward to getting back into a routine and seeing my coworkers and students, I feel like I am not mentally or emotionally prepared.

How did I do it in September?

I know that in a few short weeks when Peter returns to work Ethan will begin day care, and it makes me feel extremely sad – and guilty – that I will not be able to spend as much time with him as I have these last few months. I am sure every Mommy goes through this, right?

I’ll be ok.

I know we will all be fine once we get adjusted to being back to work… And I am sure I will make the best of our afternoons, evenings, and weekends squeezing in every kiss and snuggle possible!

We’ll be in hiding for the next ten years! Ha ha ha.

Anyway, as you may or may not know… Today is World Hemophilia Day!

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The last few days I have flooded my Facebook (really sorry) encouraging people to wear red in support of hemophilia. I also asked people to share their photos using the hashtags #lightitupred, #hemophiliaawareness, and #worldhemophiliaday so others could easily see the support they provide to the bleeding community.

Needless to say today was very, very, VERY emotional!

It is truly AMAZING to see the love and support we receive from all our wonderful friends and family! It is overwhelming to say the least, and we really DO appreciate it!

I knew some people would wear red, but I really did not expect to see this much support! More than sixty people proudly shared photos of themselves wearing red with their friends, children, other family members, etc.

Please take a minute to view Ethan’s Facebook page if you want to see some of the wonderful people we have supporting us… It really is awesome!

I am so proud and thankful of the wonderful people we decided to share our story with. Obviously Ethan has touched their life in some way, shape, or form and it’s great to see people are now aware of what hemophilia is… And better yet, THEY SUPPORT IT!

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The first photo that was sent to me early this morning was one of our nephew Colin’s grade two class – which also happens to be in the school where I work. As soon as I opened the attachment, my heart literally exploded. It was so moving to see such an amazing, thoughtful grade two class (and their wonderful teacher) make hemophilia headbands and a poster that boldly stated “We Love Someone with Hemophilia”. After lunch, we paid them a visit and had a little chat. And of course, Ethan loved the attention!

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We also stopped by Ms. Sheppard’s grade three class. Ethan has visited the school numerous times and loves to visit all of the primary classes, but Ms. Sheppard invited us in to share our story and read a book about Ethan’s hemophilia to her class. They too made headbands and had the opportunity to play with Ethan and ask lots of questions! Ms. Sheppard had already covered the basics of what hemophilia is, but they were eager to learn more!

Wow! It was a great day to see so much support from these amazing children – and their AMAZING teachers (who I am very proud to call my coworkers). It did my heart good!

Well, to clue things up here’s a little update on Ethan…

Things have been pretty quiet lately; no significant bumps or bruises and no need for extra treatment. This past Wednesday marked Ethan’s 50th treatment of Advate since he was diagnosed, which means his chances of developing an inhibitor have now significantly decreased… That’s great news! Instead of going back and forth to the Janeway for blood work every two weeks, we now only have to go every six weeks until he reaches 100 infusions.

The blood work Ethan has been having lately also indicated his factor levels prior to receiving his Advate. Unfortunately, they were lower than the doctors anticipated so they increased his dosage to bring his levels up a little more. Apparently it’s not uncommon for small children to metabolize the factor quicker since they are so active – and we ALL know how active Ethan is! But having a double dose should, in theory, bring his levels up a higher so they don’t drop as low in between doses.

Aside from that, things have been going really well! We have been really busy preparing for Ethan’s first birthday party – He turns one on April 25th. He can’t wait to celebrate with all his friends and family. Since Ethan loves swimming so much (and it’s a safe activity for him to participate in) we decided to book his party at the swimming pool. We are all really excited about it!

I will be sure to post lots of photos.

Anyway, I apologize for not writing sooner. But, I think you’re up-to-date now.

Kerilynn

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