Baby Z’s Journey with Osteogenesis Imperfecta

Baby Z’s Journey with Osteogenesis Imperfecta This page was created to raise awareness for Rare Genetic Conditions, such as Osteogenesis Imperfecta, also known as Brittle Bone Disease.

After back to back casts for Zaeland for tibia fractures, he's a free boy! And a very busy one too. We've been outside p...
05/31/2025

After back to back casts for Zaeland for tibia fractures, he's a free boy! And a very busy one too.
We've been outside playing most of the day. And he's taking advantage of being able to be on the move again, 100%.
We go back for follow ups in 3 weeks - his orthopaedic surgeon wants him walking in with his walker, and he's already doing so good!
Maverick is headed to Montreal in October for his rodding surgeries, so we're going to (fingers crossed) make the most out of this summer and enjoy every second we can doing something we love.
We're also soon going to coax poppy in to getting the boat out, the boys have never been for a boat ride, and we're going on one this summer, no matter what!
Momma is finishing up her Mental Health and Addicitons course, then off to Bachelor of Community Studies in the fall 💜 it's gonna be busy, but so so worth it in the end!!

We love when it starts to get nice enough to play outside 🥰The boys have both become opposed to napping - no matter how ...
05/15/2025

We love when it starts to get nice enough to play outside 🥰
The boys have both become opposed to napping - no matter how tired they are, and taking them outdoors is one way I can keep them busy until dinner time, then we head in for some yummy food, warm baths, and bed time 🥰
The boys are both very active. We go go go all day long.
Oh, and I just registered Zaeland for preschool 🥹 time just goes to fast!

Boy has it been a while. The past year and a half has been nothing short of chaotic with 2 boys with brittle bones who a...
04/27/2025

Boy has it been a while. The past year and a half has been nothing short of chaotic with 2 boys with brittle bones who are playing more and more rough by the day.
Zaeland had his rodding surgeries last year in August as many of you already know. He had a total of 3 surgeries due to blood loss and having to stop after finishing only one part of his procedure; although I am grateful the doctors were as transparent with me about the amount of blood loss as they were. We did one femur, both tibias a week later, and a week after that we did the other femur. He recovered nicely, with no complications after his surgeries.
In November, I decided to avail of a little break and travel across the country with my brother so he didn't have to drive it all alone. Every time I leave home one of the boys break. While I was away I received a call that Maverick had broken his femur - I wanted to change my plane ticket and fly home that evening but my mom wouldn't let me (she's the best). I spent my trip with my little guys on my mind the whole time, though I was extremely grateful to see my best friend and god daughter and some close family friends 🥰
When I returned home, Zaeland and I headed on our road trip across the province for a week of physiotherapy, where he made wonderful progress.
Zaeland was getting back on his feet with his walker, when he started to refuse to wear his braces so we came to a bit of a stand still. He then stood for too long and his ankle buckled under his body weight and fractured his left ankle. He ended up casted for 4 weeks, and during this time I had to travel for training for my course (Mental health and addictions) and received a call that Maverick had fallen on him, but he seemed okay, my concern skyrocketed, because the rods provide stabilization I was still worried about a fracture, which we confirmed about a week and a half later, when we attempted to wear zaelands braces and he cried in pain, which ended in an er trip for X-rays, which confirmed a tibia fracture (no bowing of his rods thankfully).

Meanwhile, in the background, Maverick has learned to walk, broken, and learned to walk again. And has recently picked up from walking to running (🫣 this is me most of the time). Mavericks rodding surgeries are now scheduled to begin in October of this year, and we have leg for leg planned as we did with big brother; although we know this may not go to plan, my anxiety about the second time going through this big surgery is not as bad as I know some of what to expect this time.

I'm sorry it's been so long between updates - with my schooling, and the boys being full speed ahead from the time they get up in the morning until we go to bed in the night, momma is stretched thin, and I am hoping to be able to balance the page; and everything else, a little bit better in the coming months.

We appreciate everyone's support! Pictures of the boys added, as a lot has changed since our last update! ❤️

Zaeland is currently Post-op day 5 from his left femur rodding. They intended to do the femur and tibia but the amount o...
08/18/2024

Zaeland is currently Post-op day 5 from his left femur rodding. They intended to do the femur and tibia but the amount of blood loss was too much to continue. We have spent the past 5 days relaxing and letting his leg begin healing.
We've had a couple 'big' milestones since. His epidural was removed post-op day 3, and he was switched to oral pain meds around the clock. He was comfortable enough yesterday that we fixed up his wheelchair and hit the hallways for a walk in the afternoon! Needless to say, he enjoyed himself thoroughly and was very thankful to be able to get out of bed. He was a bit uncomfortable in the early hours of the night so we gave him his pain meds, and once he settled we left him for the night and he slept all night. This morning he had Tylenol at 8am, and hasn't had any meds since, so we switched them to as needed (with dr approval, of course.) He's been happy and goofy today with no signs of discomfort.
The plan as of right now is bilateral tibia rodding on Tuesday, the 20th, pending all his bloodwork comes back to the drs satisfaction to continue the work.
He still has a long road ahead, and we can use all the healing prayers you have to offer right now.
He's such a strong boy! Stronger than his momma, that's for sure!!
I am SO proud of him for being so strong through it all.

Since the summer rolled in we have been BUSY! Maverick is still in his cast, unfortunately but we have been keeping him ...
07/09/2024

Since the summer rolled in we have been BUSY!
Maverick is still in his cast, unfortunately but we have been keeping him occupied with activities that he can participate in while in his stroller or in someone's arms.
I bought a bicycle and a cart and we have started going on bike rides (as of today it was cold and foggy for days after I got the cart) and we do walks and other things.
Zaelands been loving the water. We've been to the public pool I think 4 times, and he had his infusion yesterday so the compromise for the pokes was a new pool for the garden. Zaeland can walk unassisted in the water; and we are going to spend as much time in the water this summer as we can before his surgery in August.
Maverick has a follow up with his Orthopaedic surgeon on the 17th, although I am doubting his cast will be removed due to timing we are going to be needing it changed by then anyway.

Maverick and I leave for Montreal on July 28th; he has all day appointments on the 29th and if all goes well home on the...
06/24/2024

Maverick and I leave for Montreal on July 28th; he has all day appointments on the 29th and if all goes well home on the 30th.
Zaelands surgery is officially scheduled in August - with his first side being done on August 13th and the second being done 2 weeks later on the 27th.
Stressful - but hopeful times!
(Recent pics for tax; Mavericks broken and Zaelands starting to get on the move more independently!)

06/12/2024

It's official. Maverick has been accepted into the Shriners clinic in Montreal & we head over there for his initial assessments on July 28th.
We are also in the works of scheduling Zaelands rodding surgery for August. Fingers crossed. 🤞🏻
He's much more mobile now and becoming more and more independent; which has been raising concerns lately due to the severity of bowing in his femurs. We feel it's best to do this surgery ASAP.

Happy wishbone day from the two biker boys 💜
05/06/2024

Happy wishbone day from the two biker boys 💜

Still cheesin' 💜 The strength I witness in my boys daily while fighting their fight with OI is phenomenal. They may be f...
05/04/2024

Still cheesin' 💜
The strength I witness in my boys daily while fighting their fight with OI is phenomenal. They may be fragile but they are fierce 💙
Zaeland is almost 3 and uses a walker to be mobile independently; he can support his weight on his own now; but the severity of the bowing in his femurs causes him to be off balance.
Maverick turned 1 in November; and before he broke he could stand and cruise along furniture and other objects. He has figured out how to stand up with his spica cast on 🥴 and has holes worn in it because there is NO way of stopping him 😅
And I won't try to stop them if they are not in imminent danger. Kids must be kids. Fragile or not.

04/30/2024

Hey everyone,
Sorry I've been awol lately; we've had a busy past couple months between infusions, breaks, sicknesses, procedures, and me being completing school to become a Mental Health and Addictions worker.
Here's the run down:
January - mavericks infusion and scheduling appointments; physio and other specialists. We were all sick for 3 weeks as well and if it wasn't for my mother I honestly don't know how I'd have managed lol
February - Zaeland hurt himself and we thought he had broken but it turned out to be muscular - which he struggled much more with than a break; but he is not used to that type of pain. Maverick fractured his femur as well toward the end of the month.
March - Zaeland had his dental work done in St.John's; we ended up getting stuck for 2 extra days because of a snow storm. Maverick got his cast off on the 20th. Zaelands AFOs started to chafe after an adjustment while we were in town for his dental work. He also got a walker.
April - Maverick fractured his femur again while I was away with a family member for a medical procedure. Same femur, same location but this time it was a hairline fracture. My final essays and exam prep began, as well as obtaining certifications needed to be able to participate in my placement which starts the beginning of May.
Maverick has been accepted into the Shriners clinic in Montreal, and we are waiting for dates for Mavericks initial assessment and Zaelands femur/tibia rodding.
Now that I'm beginning to get a better handle on things I'm hoping to update more regularly.

It’s been a trying past week. Zaelands dental issues are starting to bug him; and when I called the booking office for h...
02/19/2024

It’s been a trying past week. Zaelands dental issues are starting to bug him; and when I called the booking office for his oral surgery - they’re booking in April 😪. We are on the cancellation list but they haven’t been having many cancellations.
Mavericks cutting 8 teeth the one shot & hasn’t been sleeping well so neither has momma 🥲

On the other hand. Both boys are now cruising around furniture. Standing to whatever it’s possible to stand to; up and down all day long. Zaelands into jumping off of things now as well which is terrifying but kids gotta be kids!
This momma is STRESSED and BLESSED 😂

I think about all the struggles they’ve been through in their short lives; and it tears at my heart, but I wouldn’t change anything for the world. They’re moms little men and this momma will stand by their sides through thick and thin. Good and bad. Healthy and sick. Unbroken, and broken. Momma will be there 💜

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Newfoundland

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