Monday, July 5, 2021

One of my fears came true, Inari broke the same femur again….

Inari got her spica cast off May 27. Those few weeks after she was taking it slow and didn’t start standing til June 12. Than she was getting back into the groove of walking.  It was happy times. She could take baths, thinking about summertime and the swimming she could do. Seeing her start walking around the house again was honestly so awesome.


June 13 Aurora was riding on a quad and had a small accident. She broke her wrist (distal radius). A week after the fracture we finally got in to see an ortho and it was even more displaced. The ortho tech had to cast and put pressure to get the cast in a certain angle so it would heal properly. It was painful and I felt so bad for her. Thankful she didn’t need surgery because I was really nervous of that. She plays violin and her left wrist is very important for her playing. 










June 27 while I was doing some dishes, Inari was going around the house and playing. We had told her multiple times to slow down. She fell and her leg was bent back behind her. Unfortunately it was the same femur she previously broke and I was so nervous she rebroke in the same spot. It ended up being a new fracture lower down. 


Her last femur fracture she was in A LOT of pain and I was not going to let another doctor send us away without getting appropriate pain medication. The ER doctor said no “she’s too little”. I’m not quite sure what this means, a child is too little to be appropriately medicated for an excruciatingly painful fracture? 🤔 I kept pushing. He asked me what medication like I’m a doctor or something and know what medications can be used?! He stated once in a cast the pain isn’t bad and if it is it’s because the cast is digging in somewhere or there’s something seriously wrong. This can be true but NOT for a femur fx.


The femur is the longest, largest and strongest bone in the human body. When broken they cause very painful muscle spasms. Inari was in so much pain last time for the first 5 days she was ripping clumps of her hair out. Nobody at Greater Niagara General Hospital gave 2 shits last time OR this time. I’d love to see one of these doctors break their femur and only have Motrin and Tylenol for the pain 😏






After refusing any stronger pain relief and waiting over an hour he comes back in saying “you’re getting what you wanted”. He was giving her stronger pain relief so he could splint her and than they where going to send us to McMaster for a spica cast. After giving her pain relief and waiting for it to kick in, he states that she got a good dose and will not be in any pain and that she may act in pain because she knows it’s broken etc….. he tried to start splinting her up and guess what, she was SCREAMING in pain. He stopped and ordered more medicine. Remember though, strong pain relief isn’t needed for small children 🥴


After she was splinted we had to wait for the paperwork to be done to be sent to McMaster children’s hospital. Inari had her very first ambulance ride (mine too). The paramedics gave her a stuffed bear after loading us up. She absolutely loved the bear !!! Once we where all registered at the children’s hospital, I found out the ER doctor at GNGH never told us we’d be spending the night so I had NO supplies or anything with me. This hospital is an hour away from home so it would be a pain to have my husband load up the other kids and come bring us stuff for one night.






The children’s hospital does sedation and spica cast in the OR, not in a back room of the ER like our local hospital… so we spent overnight and had to wait til the next day in the evening for them to get her in to do the cast. The ortho decided to do a long leg cast instead of a spica. I thought he knew best and trusted that. The fracture is closer to the knee and didn’t need a spica was what I was told. He told me there shouldn’t be much pain as this femur fx wasn’t as bad as her last one, but I insisted on pain meds since I didn’t want her in pain like last time. I’m just so thankful this children’s hospital medicated her the entire stay and the ortho sent us home with a few days of pain relief for her.


The first couple days seemed ok for pain management. Thursday evening all of a sudden the pain started to increase. Friday too, but in the evening on Friday she was screaming in so much pain during transfers that it was almost like she rebroke it. We went back to the children’s hospital ER where they did another X-ray and talked to the ortho. ER doctor was told a spica would not help her due to where the fracture was (BS!!!) and they gave us a few more days of pain meds to manage the pain at home. 


A spica wraps around the waist and than goes down the entire leg. The leg cannot move around freely in a spica. It’s supported and immobilized. A long leg cast can move around every which way, weighs down on the femur & she could easily rebreak it. The pain she’s having could of been avoided if her femur was supported and immobilized properly. A learning lesson for me that femur fractures need to be in a spica and don’t let any of these local doctors make me think otherwise. 


I’m trying to distract and keep Inari busy so that she isn’t moving around too much. Using  the stronger pain meds for times she’s in a lot of pain or when we need to go out and transfer her to the car seat. 


Our plan going foreword is to hopefully get in to see her bone specialists at Shriners hospital in Montreal. They want to start her on bisphosphonate treatment (zole) and we will talk to one of the doctors there to see if she needs or would benefit from having a rod placed into her femur so that she will stop continuously fracturing it. 





Thursday, May 13, 2021

Inari got a package from the Alle Shea project!

Years ago when my oldest was small, I stumbled across an organization called the Alle Shea project. They fundraise money for the OI Foundation, but also send out snuggle buddy packages to OI kids all over the world. So if a child is receiving treatment, admitted to the hospital or recovering at home the lovely people at this organization will send out a package for them!!!






They do this in remembrance of their firstborn daughter named Alle Shea! She was born with osteogenesis imperfecta type 2. Type 2 is the most severe & unfortunately she lost her battle 5 weeks later.









Sunday, May 9, 2021

Inari’s Femur Fracture Part 2

I’m going to be honest..... 


While waiting for sedation, someone came into the area we where in and said they needed to check something. They went up to my daughter, looked at her, than turned around and left. I heard them in the hallway say to someone else, “they’re blue.” .

Usually I’m greeted with much more respect when somebody is inquisitive about my daughters blue sclera. I’m asked by doctors etc if it’s ok if they can have a look at my child’s eyes. So, just have some decency and ask me instead of coming into the room to look and than go out to the hallway and talk with your colleague about my child’s eyes. I can hear you👂 I found it incredibly rude.


Now, I don’t necessarily want to speak ill of any of the ER doctors, especially in area’s they don’t have much experience in. They aren’t experts in bones, nor are they pro’s in casting. It’s not everyday that a young child comes in with a broken femur either. Spica casts aren’t very easy to put on, especially for someone that isn’t trained to do casts. BUT, I will say.... there is such a HUGE gap in quality of care that we receive in the ER as opposed to the fracture clinics care.


When my 2 year old daughter finally had to be sedated and lifted into the air to have casting material wrapped around her..... she was fully exposed below, twitching out from the drugs and the entire way/ process of how everything went down left me feeling a certain type of way. The one ER doctor that came in to help lift her that we’ve seen before, was trying to be reassuring as my daughters face was twitching from being heavily drugged. She woke a little and made a sound, but her body was still and she didn’t make any other noises. The ER doctor treating her ordered more drugs. I should of said no that she didn’t need them. I hesitated. I should of trusted my gut. When the person came back with the needle they even questioned the doctor if it was needed. It really wasn’t, but they gave her more anyways.


It took an hour or so for her to finally wake up. Everything was ok and we got to go home once she was more alert. We would see the ortho in a few days. 


Two weeks we had to wait for a cast change. ER doctors always put on a plaster cast. The spica they put on, or should I say attempted to put on was literally falling apart. The piece connecting the leg and part around her waist was about to snap. The ortho tech’s at the fracture clinic are amazing !!! There where a few that all helped during the process. The one we see frequently is so amazing at her job. I felt they treated my daughter with so much dignity and respect. Covering her up when we needed the diaper off to wrap the casting around. Pulling the curtains back when another patient walked through the room for their cast removal. Talking to my daughter and asking questions etc... the entire team working at that fracture clinic made such a difficult time go easier on us. I have not one negative thing to say about them. I sent in an email to patient relations because I’m just beyond grateful for the wonderful experiences we have there. 


Being a parent with kids that have OI, you have to constantly advocate for your child. When I’m at the fracture clinic and they’re getting casted, I feel like that’s the only place I don’t need to advocate for them. They know what they are doing, and clearly have more awareness in their job to do it properly while treating their patients with the respect they deserve.


Thank your ortho tech. Let them know what a phenomenal job they’re doing & that they are appreciated. If there’s one good thing that come from my girls’ fractures, it’s being under the care of them. 







Wishbone Day was on May 6

International awareness for Osteogenesis Imperfecta


The community wears yellow in support. Here are the girls wearing their yellow : )








I will update again soon! Inari goes for a cast change in a few days & I think she broke a rib this evening 😔





Thursday, April 29, 2021

Inari’s Femur Fracture part 1

When you have a child with brittle bones you know the cry. It’s very different than their normal “I fell and hurt my knee” cry and sends you running. You know they’ve broken, and now you have to asses the situation. What are they holding, did they hurt their back/ neck, is anything deformed/ sticking out etc. as you mentally go through a checklist in your head to see what your next steps will be. 


Sometimes I wonder how such a simple fall can cause such a drastic break as she’s had hard tumbles before and was perfectly fine. I didn’t see how she fell, but she slipped on a sock and landed in a way to fracture her left femur. Once I knew she was going to be ok for a few minutes without me, I asked my husband to be with her while I quickly got dressed and ready to head to the hospital. It’s not fast enough, but I was getting ready turbo speed. Once I had everything ready to go, we tried putting her into the rear facing car seat. I knew my husband would have to flip it foreword facing now. It hurt her being in rear facing and caused more discomfort. 


Because of COVID, we had to go through screening and than wait for triage to see us. I swear it felt like the longest wait ever and i just wanted to demand someone come right now! Thankfully, she was comfy in my arms and no longer screaming in pain. Triage nurse seen us than placed us into their back area instead of the waiting room. It took a while for them to come and do the X-ray & then to see the doctor. Her femur was displaced. We’ve never dealt with such a big bone being displaced.






Femur fractures in young kids require a cast called a spica. The cast goes from the foot to the top of the leg, than they have to wrap the mid section of their stomach by bellybutton. It needs to be very well supported and a bit of a pain to do. When the child is in so much pain and needs to be lifted etc, it’s easier and less painful for the child to be sedated. Let me tell you though, I was not mentally ready to actually see her sedated and how her body reacted from the drugs. She was left very exposed during the whole process with multiple people in the room trying to get the casting done. It wasn’t very well executed, and since she kinda woke up a little during the process the Dr ordered more drugs. I should of trusted my gut and said no. She wasn’t moving, making any sounds etc so I’m not sure why more drugs where needed. If there’s ever a next time I’ll remember to use my voice and say no.


All I’m going to say about the next two days is that I got nowhere with trying to contact doctors and hospitals that specialize in OI care to see my daughter. ER doctors wouldn’t give her pain medication. We seen the local ortho who just gave her Acetaminophen with codeine. Femur fractures are extremely painful and need a stronger pain medication. For some reason the doctors in my region don’t want to prescribe her proper relief whenever she fractures. The first 5 days where not fun trying to manage through all the pain. All she wanted to do was hold my hand or arm and be near me.


The ortho said we didn’t need surgery and basically it should heal fine. The thing with OI kids/ bones, there is a high chance of having the femur re-fracture in the same spot now. A lot of kids end up getting FD rods placed into the bone so that the bone doesn’t get displaced when fractured, and many kids stop fracturing when one is placed. This may be something we have to think about and talk with Montreal Shriners to see if they think one is needed. (Or hopefully she’ll never fracture it again🤞🏻) Just waiting for all this COVID stuff to be better managed in the near future and we can return for the girls’ care. 


*** I’ll update with a part two because I think the next part deserves an entire post of its own !!










Saturday, April 17, 2021

2020 / 2021

It’s been a while and quite a year to say the least since my last update!!


July 2020- Inari slipped on one of her toys and landed straight onto her back. At first I was afraid she compressed some vertebrae or seriously injured herself because she wouldn’t get up off of the floor for a while, so an ambulance was almost called. Thankfully I got her up after a while and we drove to the hospital. They didn’t do any back xrays but they xrayed her right leg.


At first the ER doctor said he didn’t think there was a fracture, wanting to wait for radiologist to take a look. Came back and again said both him and radiologist didn’t think it was broken. I asked to see the X-ray. You could 100% see the fracture in the middle of the bone, but because it wasn’t touching “the edges” they didn’t think it was a fracture. He said he would cast it though and while wrapping it up the doctor than changed his mind and agreed that he thought it was broken. 








In January 2021 Inari fell and fractured her foot. I didn’t take her in right away as the pain was manageable and sometimes fractures don’t show right away on X-ray, or not at all. We wrapped up her foot and waited a couple days, but since she wasn’t feeling better or walking we decided to get in confirmed at the hospital. The spot was honestly so small I could barley see it myself, but it was broken above her big toe.






Literally 1 month being cast free, Inari took another spill and now has the worst fracture either of the girls have ever experienced. I will write a new post about it as there’s A LOT to write about. This has not been a good experience at all. 



Aurora has been relatively good, but because of COVID we haven’t been to Montreal Shriners for either of the girls in over a year. So no Zole treatment for Aurora. No big breaks, butttt she has had many small ones. 2020 was the most fractures she’s ever had in a year.




  • January, hit wall with her foot and broke her right pinky toe. Also hit her hand during gym on the floor, left middle finger. Bruised and warm to touch, small bump on top. Confirmed fracture, but non displaced so we splinted at home.


  • July, 2 separate injuries to toes. 1 was confirmed broken. 


  • August she injured her foot, was in a lot of pain. Went to ER right away because she literally came home balling her eyes out, which usually doesn’t happen whenever she injures herself. They said it wasn’t broken but we’ve had foot fractures that didn’t appear right away. Just wrapped it up and let her use crutches at home til she felt comfortable walking again.


  • December she injured one of her fingers, we didn’t go for X-ray to see if it was actually broken but it hurt her a lot. We splinted.




Ok..... so I think I’m done!!! Here are some pictures of the girls from the last year. It’s been one of the most hectic years, but they are very resilient and we’ve made do/ had fun : )




































Thursday, January 30, 2020

X rays

So, I decided to go to the hospital and other places I took the baby to so I could get a copy of the X-rays. I also had to take Aurora for an X-ray the same day because she injured her finger during gym, which ended up bruised, swollen, and warm to the touch. Definitely fractured. Even though fingers and toes usually need little intervention, it’s good to have an X-ray to make sure it isn’t displaced. Aurora had a fractured finger 3 years ago (same one she has injured now!), and there was swelling and lots of bruising. Mothers instincts told me to bring her for X-rays even though my husband thought she was fine because she didn’t have any pain and was using it. Turns out it was slightly displaced and the doctor had to put it back into place.

I examined Aurora’s X-ray and found the fracture. It’s so subtle, I honestly thought I wouldn’t get a call saying it was fractured, but i did !

I did have to increase the detail and the colour a little bit so that it would be more visible, but I spotted it very faint on the X-ray disk before downloading the images.



As for Inari’s xrays, I know now why it took so long to get answers. Her December ones done at the hospital, days after her injury, show absolutely nothing. When I looked at the disk from the place we went to ordered by the walk in clinic doctor, the X-rays weren’t even done where she had the fracture. Inari had a bruise on her ankle, also pain was by ankle area too. So that’s where the doctor ordered X-rays... foot/ ankle, NOT tibia. Than the last hospital X-rays show her fracture. This is why a lot of times ER doctors, or a doctor knowledgeable about broken bones will usually have an X-ray on an area that’s not necessarily hurting but near the pain. 







Today I had to take Inari to the ER, as the last few nights she’s had trouble sleeping because of the pain! Tuesday night, she woke up maybe 20 times and the first 3 hours after going to bed where the worst. Wednesday night, she woke up too many times to count. Very restless, flipping around and crying. I got no sleep. She got little/ no sleep. She finally passed out at 6:30 am and woke up around 8:20. The ortho we seen Sunday left her in a splint, so the ER doctor thought the pain was from it not being stable enough. She’s in a cast now, and even though she literally just passed out, she seems more content. I’m expecting her to heal up nice. Hopefully in a few weeks or so she’ll be cast free, and we can get her walking again.







Wednesday, January 29, 2020

Awareness makes a difference

Why I spread awareness for Osteogenesis Imperfecta, aka brittle bones....

As a mom with daughters that have OI, I have to constantly advocate for their healthcare. Not all fractures show on xrays, nor do doctors know they should splint a suspected fracture. 

When I am in public, and my children are splinted or casted, you wouldn’t believe all the looks I’ve been given. When Aurora had two broken tibias when she was two, we had a man come talk to us and basically insinuate we hurt our child. As a person with an anxiety disorder, this really affects me. Having people assume I hurt my children. People judging, staring and looking at me weirdly because my children have broken bones. 

Many parents have had their children taken away for suspected abuse. Sometimes even when a diagnosis of a bone disorder is determined, and that would explain the suspected fractures, they still have to fight for their children to be returned home.

Shriners Hospital in Montreal have been so amazing to my daughters!!! Many children from all over the world attend their OI clinic. If it wasn’t for the Shriners & the fundraising they do, many children would have gone without optimal care. I’ve heard people say that they are the world leading in OI care.

There are many different types of OI, but even those that fall under the same type are not the same. We call our OI children snowflakes because they are all unique! One person with type 1 OI could have very little fractures, while another person with type 1 could have 50+. 

Having OI doesn’t mean you have to worry about just broken bones... it can effect Ligaments, hearing, teeth (dentinogenesis imperfecta), bowing of the limbs, scoliosis, respiratory problems, short stature etc...



Why do I raise awareness .... because awareness makes a difference !!!