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.

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 !!!

Inari

Our little Inari has been a challenge. She’s feisty and a little spit fire with an attitude. Also, clumsy. I’ve been so nervous since she’s learned how to walk. Over Christmas break she had two accidents.

The first one she fell and knocked her front tooth on a hard plastic toy. The tooth went completely back into her gums, you could barely see it at all. We got sent to a children’s dentist after the holidays where over. Thankfully other than it being crooked,  the tooth is coming back down by itself,  which is apparently a good sign. We go back in a few months to reassess everything, so *crossing fingers* everything goes ok!

Now, her second accident we went 4 weeks without answers. I assumed she had a fracture BUT nothing was showing on X-ray. When that happens they are called occult fractures. People with bone issues are more susceptible to these types of fractures. One thing I’ve learned over the years is if an X-ray isn’t showing a broken bone but it hurts and seems like there IS a fracture, than you splint and treat it as you would a fracture. 

December 27th I was giving her a bath. She went to try and flip from a sitting position onto her hands/ knee’s and I think she twisted her ankle. She was already upset and crying so I honestly wasn’t 100% sure if she hurt herself or just irritable as she had been lately in the evenings. Come morning, I knew something was broken. She was laying down after she woke up and wasn’t sitting up. This was not her norm. I picked her up and right away her entire body went rigid and she started wailing. It took a little bit to pin point what was hurting but I narrowed it down to her left leg, and my husband noticed her ankle/ foot area was the most sensitive.

Took her to ER which showed NO fractures. The ER doctor was very nice and knew what I was talking about when I mentioned broken bones not showing up on X-ray right away. Some ER doctors I’ve had seem to dismiss my knowledge on my children’s bone condition and basically say I’m wrong. Thankfully, we’ve also had some really great experiences with the doctors there too! He told us to come back in a couple days If she was still in pain. I waited 3, but unfortunately nothing was showing still.

Our girl’s paediatrician was on Christmas break so I had to go to a walk in clinic. I knew something wasn’t right and wanted it looked at. The doctor we seen said she thought it could be a ligament tear. Ok, that would make sense since the type of OI she has is because of defective collagen, which will affect not only the bones but ligaments/ tendons etc as well. So here’s another round of X-rays and an ultrasound (January 14th). Ultrasound called us back a few days later because they wanted more angles. I was hoping they seen something and needed to asses it further. Finally we could get an answer. Wrong. It’s now the 22nd and I find out that that neither the X-ray nor the ultrasound showed anything. The lady on the phone brushed it off because nothing was seen. I was very upset. My 17 month old daughter who was once running around the house still cannot even bare weight on her foot and we still don’t know why.

Since her paediatrician was back from the holidays we got in on the 23rd. He examines her foot. She’s not in much pain anymore, but she cannot stand at all. He gets me a requisition for another X-ray and says if nothing is showing that he will have to refer her to orthopaedics. 

24th, we go in the AM for X-rays and should get results back in a few days. Well right after her X-rays her foot was knocked hard enough and caused A LOT of pain. I wanted to wait til after her nap to see if she was better. She seemed ok but I could see she wasn’t moving her foot around like she was before. I tried putting a sock on when I had to pick up the older kids and she started crying. Since she just got xrays done a few hours ago, I was second guessing if I should bring her into the ER for X-rays again. Rang up her paediatrician and I was told to take her for X-rays again.

Well, after her 5th set of X-rays something is seen !!! She’s now in a half cast and on Sunday we see an orthopaedic surgeon. I asked if it was a hairline because If the bone was split in two wouldn’t they of seen it a long time ago? Apparently it’s not, but he didn’t say what type of fracture it is. I’m kinda nervous now & hoping that it isn’t serious. I’m assuming after her foot got bumped it made the fracture worse :(  .... I got major mom guilt going on. I’ll update again once I know more on Sunday


** Edit. I thought this last night, but my head was racing with a million thoughts. I’m going to see/ ask the doctor about her X-ray from before and than after her foot was bumped.... Assuming it was just a crack before it got bumped and that’s why it was missed. But because nobody would do anything about her fracture these last 4 weeks it couldn’t heal and got bumped because it wasn’t protected. I’m thinking it’s possibly broken through now and not just a crack. 100% no more having the doctors tell me “it isn’t broken” and letting them tell me what “isn’t” wrong with my babies when I know they have a broken bone 😤

Been a long time

So I haven’t really kept up with blogging. Lots of other priorities and busy busy.

We had another baby in August 2018. Born at 8:12pm and weighed 8lbs 12oz.  Her name is Inari : ) When she was 9/10 days old I noticed a bump on her collarbone. Took her to the ER and our suspicions where confirmed of a clavicle fracture. I’m assuming during the birth is how she sustained it. I knew than she had inherited OI. Genetic testing was done at Montreal shriners hospital & we got the call back stating she has Osteogenesis Imperfecta type 1.

Aurora is now 8 and will be turning 9 next month. Thankfully she’s been doing very good in the fracture department. After seeing compression fractures on her X-ray we started Zoledronic acid infusions a few years ago. Her bone density has gone up. Her bone juice is helping lots! She’s broken a finger and her foot twice, but nothing major. She’s active, runs and plays. Acts just like a normal kid her age and I couldn’t be happier.

I do have another update I’d like to post about. Once I have some time to write it all out, I’ll fill you in on what we’ve had going on with the baby! Maybe I can actually start updating regularly (haha) we’ll see.