Looking Back

Sorry for the lack of post updates, but we haven't had much new to report.  Mackenzie is walking/running around all over the place these days.  She still has a bit of a widened stance when she walks, but it has definitely narrowed. She still wears her brace for napping and at night.  We go back for another x-ray and check up in about 2 weeks and are hoping we can ditch the brace for good.

I was looking through some old photos yesterday and it is amazing how much she was able to do while in the cast.  Even now, she walks around with it on when we have it on her before or just after sleeping.  She always stands up in her crib now too when she wakes up and wants out.  She's quite a climber, so I am happy for the brace in the sense that it prevents her from climbing out of her crib!

I am trying to get a video of her running, but it seems like whenever the camera comes out she just wants to touch it.  I will definitely update after our next appointment.

Here are some photos from the past 6 months or so:

From October - the Brace doesn't stop me from crawling through my tunnel!

From October - I can just about reach it

From December - playing in a bucket

From December - tobogganing at the babysitters is so much fun!

From December - She loves doing this, so funny!

From January - a Winter walk

Another Check-up Appointment

Even though I always feel very nervous every time we go for a check up, this one was pretty uneventful.  We know the drill by now.  Show up, sit in the waiting room for a bit, go back and get an x-ray (it is an unspoken agreement now that Brice always takes her because he's stronger to hold her legs in place, and I just hate seeing her cry).  Then go back to the waiting room for a bit.  Get called in to the exam room and wait some more.  Resident comes in and asks a bunch of questions that should be in the chart.  Wait some more.  Doctor comes in and tries to get out the door in as little time as possible.

In all seriousness, this appointment went well.  Apparently Mackenzie's hip is still developing, but the angles aren't quite where they'd like them to be.  She will continue to wear the brace when she sleeps - naps and at night - and we go back again in 3-4 months for another x-ray and check-up.  The resident this time was quite informative and explained things really well to us.  However at this point I feel like we almost know as much as them with all the research we have done.

She completely freaks out whenever anyone tries to touch her.  When the resident was trying to examine her she arched her back and was crying so hard and trying to get away.  When the doctor came in he told Brice to just hold her on his lap, but she still cried and tried to get away.  It was kind of cute when she covered her eyes with her hands like that would make him go away.

Because things are continuing to improve we will just continue to wait and see.  The brace wearing is just to help hold her hips in the optimal position for growth.  If, and it's a big if, her hip isn't where they want it to be by the time she is about 4 or 5 then we will be looking at surgery.  The doctor still thinks that is not likely.

As far as the walking, not much of an update.  She will take the odd unassisted step here and there but generally just drops down to her knees to crawl.  She likes to kind of crawl/shuffle sitting up on her knees which is pretty funny to watch.  She is an expert at cruising around with her walking toy.  I'll try to get a video one of these days.  She can steer it and everything and will often times grab it and steer it around to walk to where she is trying to go.

What a Change a Week Can Make

It didn't take Mackenzie long to adjust to life without the brace.

The first day without her brace while she is awake she was already pulling up and standing against everything.  This wasn't a huge surprise as she was doing the same thing before while wearing the brace.

Imagine our surprise when just three full days later she was climbing up full flights of stairs!  She will shuffle along furniture, take a few steps if holding our hands, stands all-the-time and has discovered how to get into all of our cupboards and drawers.

Wearing "real" jeans like a big girl, no need for clothing
to be practical for under a brace :)

Brice took her to her follow up physio appointment on Thursday and they discharged her.  They said she was already meeting all the milestones a kid her age should be and there wasn't really a whole lot they could do for her.  They gave us a few exercises to work on her with.  One is to have her shuffle towards the left along the furniture.  She much prefers moving to the right.  Her left hip was the one effected.  We also were giving some exercises to help transition her from walking supported to moving between furniture to hopefully walking on her own soon.

6 Week Post Spica: Follow up Appointment

I was dreading this appointment as it seems like every time we go to our Orthopedic Surgeon we seem to get "bad" news.

That was not the case this time!

Mackenzie only needs to wear her brace now for naps and night time and she can start working on learning to walk.

Hello World!

I think our surgeon has learned that when it's us he is going to have to explain things very well and wait to answer all of our questions.  He did a much better time this time explaining the rationale behind this next step and giving us an opportunity to ask a few questions.  He still did open the door and begin walking out while he was still talking to us, but we are making progress.

He said that her hip is developing but the Acetabular Index is still a bit shallow.  There is no definitive research about whether or not the brace helps but we both agree that it can't hurt for her to wear it while she's sleeping.

We go back again in 8 weeks for a follow up to see if her hip has continued to develop.

The New Brace

We finally have in our possession, a hip abduction brace for Mackenzie.

Nevermind the fact that we go back to Edmonton in 2 weeks and are hoping that we will be down to her only needing to wear the brace while she sleeps.

It is still a little bulkier than I was hoping for.  It has hard plastic around the back part and then foam pieces that wrap around her legs.   Around her waist is just a piece of velcro.  It is definitely more breathable and she isn't completely soaked underneath when she wakes up in the morning.  It is definitely a lot more of a process to get her in and out of this one though.

The price, I think, is what shocked me the most.  Our diaper splint cost us $9.50, which was covered by our health insurance.  This one cost over $300, for not even that much more material!  All but $91 is covered by a government program.  I'm not really sure what is is exactly because the Orthotic place filled out and sent away all the paperwork for us.  They also were able to direct bill the remaining cost to our health insurance, which was nice to not to have to deal with that hassle.

She can sit in this brace without it pushing into her stomach, however there is a hard plastic "bar" between her legs under her bum that she almost has to "balance" on.  She doesn't seem to pull herself into a standing position as much in this one - probably because it is more secure and doesn't allow her as much movement as the diaper splint.  She also seems to be a bit slower with the crawling in this new one.

I dont think you would ever find a brace that would be perfect, because perfect would be your child not needing a brace.  It is nice to have the two options though depending on what we are doing in the day.

It's Frustrating

It's frustrating that the medical professionals who are making decisions about what is "best" for our children probably have never been around a child for more than 1/2 hour here and a few minutes there that are in things like: a spica cast, a brace, a harness, etc.


Do they know that while foam may seem cheap and just as effect, it doesn't breath at all and the little ones get so incredibly sweaty underneath?

Do they know that once the babies turn to toddlers and they try to sit, crawl, stand and even walk in a foam brace held by velcro it doesn't hold it's integrity and shape very well at all?

Do they know the struggles that come with caring for a child in a spica cast 24/7?

Do they know the emotional toll seeing your baby go through hip dysplasia takes?



Maybe if they did they would wait a little longer to answer your questions.

Maybe if they did they would take some time to talk to you about what might work best for your individual child.

Maybe if they did they would have a little more compassion.



In somewhat good news, we have finally heard back from the Orthotic clinic that they have a few different brace's in for Mackenzie to try out.  We go on Wednesday.  Two weeks after that we go back up to Edmonton for a follow-up appointment.  Is it even worth it at this point?  With the luck we have always had at those appointments she probably will need to wear the brace for awhile longer, so I suppose it is.

New Brace?

We met with the Orthopedic specialist today.  Unfortunately it is going to take up to 2 weeks for him to get a new brace for Mackenzie.  He measured Mackenzie and now has to talk to our surgeon to get some more information about what type of brace he can get/build.  I am disappointed.  That means she will only need to be in it 24/7 for 3 more weeks (hopefully!) by the time we get it.  Is it even worth it?

Look at what I caught the little stinker doing today.  She just wants to go so bad.

Rolling with the Punches

Mackenzie has literally, re-learned how to roll over and is back to moving all over in her crib despite the diaper splint.  She is also back to sleeping on her stomach and probably loving it!  She never could roll in the spica cast.  Too much weight and too awkward of a position to get the momentum to roll.

As with all things in her short life so far she has been truly inspirational and has adapted so well.  The first couple days adjusting back to brace life were tough.  She still is angry (I think) that she is not able to sit up in the diaper splint but otherwise is happy to army crawl around and has been getting back into more independent play without needing us all-the-time.

This morning I am home from work and we are headed out in about half an hour to go get fitted for an abduction brace.  We are so happy that there is an Orthopedic place here and we don't have to drive all the way to Edmonton for the appointment.  I am hopeful that this new brace will give her even more freedom and also not be as hot and sweaty underneath as the diaper splint is.

I will keep you posted!

The Case of the Brace

Well, we are back into brace life.

The first few days were rough.  Really rough.

Mackenzie had some lingering traumatization (is that a word?) from the cast removal.  Her brace does up via velcro and every time we would undo the velcro to take it off that noise would scare her and she would start crying.  She also was hating the brace.  Every time we would put it back on after a diaper change or bath or being in her carseat, she would cry. The first two days she would not even let us put her down on the floor without crying.  We basically had to hold her or be right down on the floor with her.

She is back in the same kind of brace she had before we did the closed reduction.  It's a stiff foam type material that they cut to fit and then heat up and mould to her body.  It's called a diaper splint.  In all the reading I've done about DDH I have never seen this time of brace before.  This brace worked well for us when Mackenzie was first diagnosed.  She was only 6 months old and not crawling yet.  This time around she was able to be extremely mobile in her second cast: crawling, sitting in it even, and pulling up on stairs, coffee tables, you name it.  The major downfall of this type of brace is that it keeps the kids totally straight.  Sitting is not an option.  We also have some skepticism since this brace didn't do us any good the first time around.

After a couple breakdowns (on mom's part, not Mackenzie's), we sent an email to our surgeon's secretary - who is awesome by the way - asking if there is any way we could get a different type of brace.  I even sent pictures so there was no confusion about what we were asking for.

We had asked him about this while she was still in the cast and originally he said that is the type of brace he usually uses when kids come out of the cast.  However, when she got the cast off he said he was putting her back in the diaper splint.  I mentioned in the previous post, we questioned this but he gave some answer that didn't make much sense about the other brace's being longer term.

This is one of the photos I sent to the surgeon.
Found on the Hip Dysplasia Baby Center board.  

We heard back from his secretary that our surgeon has okayed us getting an abduction brace and we need to call "Northern Alberta Prosthetic and Orthotic Services" on Monday to set that up.  I'm hoping we can get in sooner rather than later so Mackenzie can have some more freedom.

In true Mackenzie fashion, she has just taken this new adventure in stride and is back to army crawling around and playing on the floor on her stomach and figuring out how to adapt to life back in the brace.

Here is a bad iPhone photo of her in the brace

The Cast is Off!

On September 4th, 10 weeks and 5 days after she had her first cast put on following a closed reduction, our baby became cast free!

Our doctor agreed to seeing us one week earlier than originally planned due to some of our concerns with Mackenzie's cast.  We weren't 100% sure whether or not they were going to take the cast off at that appointment or make us wait until the following week when the cast removal was scheduled.

It never fails that our appointments seem to fall at a time where Mackenzie has missed a nap or could/should have napped in the car, but didn't.  So, she ends up being a cranky mess on top of everything else that is going on.  Yesterday was no exception.

As with all of our appointments we started out with an x-ray.  The x-ray technician this time was less than friendly.  She was trying to get me to hold Mackenzie's free leg in the same position as her casted leg.  Well, at this stage in the game Mackenzie wants nothing to do with laying on examination tables or dealing with medical professionals as a whole.  She was crying and only one parent is allowed in for the x-ray so I was having to try to hold her down and hold her still.  I told Brice that I never want to have to be the one to do that again.  I hate having to try to restrain her and she doesn't understand what is going on and she is scared.  I don't think they got a very good picture because I couldn't hold her totally still while keeping her hands out of the way and her leg elevated how the technician wanted it.

After the x-ray it was back to the waiting room again. Thankfully our appointment was pretty early in the morning so we didn't have to wait too long before we got called back to see the doctor.

You may remember that our doctor was not the one to do this cast.  He was on holidays when it needed to be changed so one of his colleagues did it.  Our regular doctor didn't seem to care for the cast structure or positioning right from the get go, so because of our other concerns with the cast possibly shifting and the leg circulation when Mackenzie would sit on it, he agreed to take it off at this appointment. 

Enter the "cast technitian".  They needed to make cuts along both lengths of the leg as well as both sides of the torso in order to remove the cast.  The "saw" is very noisy so we were given ear protection for both Mackenzie and ourselves.  As soon as she had the ear pieces on she was already upset.  Then when the saw turned on she got more upset.  Then when the saw was actually cutting the cast she was freaking out and crying so hard and trying to get away.  Both of us had to hold her down and move her around so the technitian could make all the cuts.  After that he had to use scissors to cut out the inside cotton part of the cast.  The whole thing maybe took 5 minutes, but it felt like an eternity.  It is a terrible feeling to have to hold your child down while they are so upset and not being able to explain to them what is going on.

We were given some clothes and towels to give her a quick wipe down.  She was stinky!!!

The doctor came back in and told us he wanted to put Mackenzie back in a diaper splint like she had before we did the closed reduction.  He wants her to wear it for 6 weeks full time (except for diaper changes and baths) and then we will re-evaluate.  He tried to examine her once the cast came off, but she was so worked up and upset that it wasn't really possible.  We asked about a different kind of brace as we have never seen any other DDH patients with these splints, but he said that those were for longer term treatment, or something along those lines that didn't make much sense to us.  As we find every time we go there, he didn't do much explaining and was heading out the door as fast as he could.

Cast free, pretty tired, and waiting for the diaper splint to be made.

So, with our very tired, and now very upset child, we headed down to the rehabilitation centre in the hospital to get fitted for the brace by an occupational therapist.  The process seemed to take forever but finally we were on our way with the brace in hand.

Mackenzie doesn't fit in her carseat with the brace, so she got to be totally free for the drive home and slept pretty much the entire way.

I'll update tomorrow with how the first few days have been going in the brace/diaper splint.......it's been a bit rough.

The 8 Week Check-In Appointment

After 8 weeks in the Diaper Splint we headed back up to the city to find out what was in store for Mackenzie.  We were trying to be optimistic, yet didn't want to get our hopes up too high and figured she'd likely have to spend a bit more time in the brace.  We hoped maybe it wouldn't be a full 24 hours a day and we could start weaning her off of it.

Again, our appointment started with them taking a new x-ray of her hips.  We then met with the OT who checked her out and looked at the brace and decided she had grown so much that they would definitely need to make her a new one if she needed it still.

Again we first saw a resident doctor, a different one this time, who checked Mackenzie over rotating her hips checking length of her legs, etc.  He seemed quite optimistic, said he didn't feel much.  We requested that we would like to see her more recent x-ray which is said was no problem and he went to get the Doctor for us.  When the Doctor came in he again, also examined Mackenzie.  He has looked at the x-rays as well.  This is when we got the news that we weren't expecting at all.

The brace had done nothing to help her hip.  Nothing at all in 8 weeks.  He started to explain that he would need to do a procedure called a closed reduction where they put the patient to sleep and under live x-ray with a dye injected in her hip to visualize it better they would attempt to manipulate the hip into the proper placement.  When he said that she would need to be in a Spica Cast after the procedure for 12 weeks my tears started flowing and I had a hard time focusing on anything else he was saying.  He did tell us that if the closed reduction was not successful they would leave her for the time being and they would do a surgical open reduction after she was over a year old.  They would try to get her in as soon as possible for the closed reduction, within three weeks, and told us that she did not need to wear the brace any longer since it wasn't helping at all anyway.

A Nurse Practitioner came in to help us fill out the paperwork that was needed for the procedure, explained things a little more for us, told us someone would call us with a date for the procedure and sent us on our way.

The Diaper Splint

When we met with the Occupational Therapist we had so many questions.  The doctor didn't really explain much to us at all.  Thankfully the OT was really great and explained how the brace would work, what we should be doing and how to care for Mackenzie while she was in the brace.

We were expecting a hard plastic, or possibly plastic and metal brace for Mackenzie and were pleasantly surprised when we ended up with what they called a Diaper Splint.  They brought out a piece of stiff foam which they measured against Mackenzie and cut to fit her.  They then heated up the foam in a pizza oven and brought it back and moulded it right against her.  Velcro closures were added to keep it tight and allow us to take it on and off for diaper changes and baths.  They even added the cute ribbon detail to the velcro with pink polka dots to make it more girly!

You can see in the photo on the right we used a nursing pillow to support her when laying. We learned that we could place her chest over the pillow (this is not pictured) and the sides would hold her in place while she played with toys on the other side (this also prevented her from rolling of her stomach as much).

We bought a bean bag chair on the advice of others on the internet (we bought it at WalMart which had the cheapest bean bags we could find). While she didn't care for it, because she doesn't care to be immobile, it served us well from time to time when she would sit still.

Life in the brace was pretty good.  Mackenzie had just started sitting up really well before she got into it so it wasn't too big of an issue that she wasn't able to do that any more.  We thought we had it set to have a way to keep her on her tummy now (she wasn't a big fan and would always roll over as soon as we put her down on her stomach).  Well, she learned within a couple of days how to roll from her stomach to her back and it only took another week or so before she was rolling both directions.  She became quite mobile in the brace.  She would spin herself around in circles and push herself backwards with her hands.  She also started to do an army crawl pushing off her toes and pulling with her arms.

She didn't fit into the high chair we previously had and were able to find a new one that fit her.  We took her to Babies R Us and basically just tried to put her in every high chair they had to try to find one that worked.  We tried some booster seat type chairs first, but none of them worked.   FInally we found the Bright Stars InGenuity Perfect Place High Chair to fit her in.  It was one of the pricier ones, but thankfully it went on sale about a week or two after we bought it and they price protect.  

We also needed to buy a new car seat because she no longer fit in the bucket seat style.  Again, we went to Babies R Us and put her in a bunch of seats until we found one that worked.  The Evenflo Triumph 65 which had a wider base that she could fit in with the brace.  

She loved going for rides in the Stroller/Bike carrier that we got from Costco.ca and fit well it in without any adjustments needing to be made.

The last item that we bought for helping care for her in the brace was a carrier.  We went with the Infantio Support Ergonomic Carrier which is very similar to an Ergo.  She fit really well in it in her brace and it was also discreet as the brace couldn't be seen while she was in it.  

As far as clothing we were told she could wear regular clothing under the brace as long as it wasn't too "bulky".  We mostly stuck with tights style pants and used baby legs a lot with a onesie.  At night she would wear footed sleepers when it was colder or else just a onesie and a fleece sleep sack.   I also really liked putting her in dresses when we would go out because it would cover the brace and stop some of the stares and comments.  

We got some interesting comments from people while out and about with Mackenzie in her brace.  One lady asked if it was for attaching toys to so that she didn't drop/throw them around.  Another person asked, when we were out shopping and I was just carrying her, if it was to help make her more easy to hang onto.  Overall though people were really great about it and usually just asked what it was and carried on.  

The 8 weeks in the brace went by much more quickly that we could have even imagined and soon it was time to head back up to see the Doctor and find out how things were going.  I still noticed a click in her hip during diaper changes so we thought it was possible she may have to stay in the brace for a longer period of time, but weren't really sure what to expect.  We were trying not to be too optimistic.  

The Beginning of the Adventure

It all started at Mackenzie's 6 month check up on March 26th with our family doctor.  Everything was going great until we got to the end of the appointment when the doctor noticed a "click" in Mackenzie's left hip.  Her hips had been checked, as is routine, when she was born as well as at her 6 week and 3 month appointments and nothing out of the ordinary was noticed.  Our doctor wanted to send us for an x-ray to have it checked out to see what was going on.

We went first thing in the morning the very next day to the Diagnostic Imaging Centre as x-rays were done on a first come first serve basis.  Then we just had to wait a few days for the results to be sent to our doctor.  We got a phone call from our doctor a couple days later telling us that they did indeed notice an abnormality on the x-ray and they were sending us to a pediatric orthopedic surgeon in the city.  We had a choice of either Edmonton or Calgary since we live in between the two cities.  It didn't matter to us we just wanted to get in as quickly as we could.  We had an appointment for the Stollery Children's Hospital in Edmonton for April 10th, so fortunately did not have to wait too long to see someone.

While we waited we did a bunch of research online, as well as talked with a colleague of ours whose daughter also had hip dysplasia as a baby.  We had no idea what the issue really was or how severe it might be so we didn't know at all what to expect.   I had been regularly taking Mackenzie to see a chiropractor and she was able to access the x-rays and took some time to go over them with me and explain what they meant.  She said things were not good and Mackenzie's left hip did not have the ball of her femur that should sit in her hip socket developed.  Also that the angle of the left hip was not correct as you can see in the images below compared to the right.  She told us to be prepared for her to be put in a brace or even potentially a cast when we went to see the specialist.

When we saw the specialist in Edmonton they took another x-ray.  First a resident doctor came into the room and examined Mackenzie he said that he didn't seem to feel any problems and it didn't seem bad.  That there maybe was a little bit of a click and that the specialist would have a look at it.  

When the Doctor came in he said "That's not a normal hip, it's not dislocating, but it's not a normal hip".  That was about as much of an explanation we got from him.  He hummed and hawed a bit between whether she should have a Pavlik Harness or a brace and decided on the brace since she was on the old-ish side for the Pavlik.  We were sent to the Rehab clinic to see an Occupational Therapist and told she needed to wear the brace 24/7 except for diaper changes and baths for 8 weeks and then we would reassess.