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.

We have Steps!

Mackenzie has started taking her first steps!  She has been cruising around with her walking toy and all along the furniture, but she took her first solo steps on Thursday evening.  She is very wobbly and only takes a couple at a time before dropping back down and crawling the rest of the way.  We are so excited and proud.

We go for another check up with the Orthopedic surgeon on December 18th so we will keep you all posted on how that goes.  She is still wearing her brace at night and for naps.

Look at Me Go!

I'm a little late getting this up on the blog, but I took this video last Friday night.  Just 10 days after she got out of having to wear the brace full time.  She just got up and started doing it all on her own.  First time up she did an entire lap around our kitchen island without stopping.  We didn't even show her how to use the toy to push.  We are so proud! She is also walking all over holding onto furniture and moving between pieces of furniture.

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.

Physio

A post from Brice

I took Mackenzie to her first physio appointment. While I had yet to experience this, it was no sooner than we went in the room with the physio that Mackenzie was crying and trying to get away from the lady. This is despite the lady not touching nor being overly close to her. Mackenzie seems to know when we are at a "health center" and its for her. So the physio sat back as Mackenzie and I played to try and get her to calm down. Mackenzie still wanted none of it. The physio left the room for awhile and Mackenzie continually checked the door and looked around the room to make sure she was gone for good. When the physio returned, Mackenzie had settled down and was playing. However, she frequently glanced over her shoulder to keep an eye on the lady and refused to crawl about as she usually would, instead choosing to sit and keep her back towards the physio and facing me.

As we played the physio asked what it was we were looking for her to help with. It turns out the lady that gets the referral, books the appointment, and then actually does the physio are all different people. Thus, the physio was not sure what we needed. After explaining Mackenzie's story up to then and how the Dr. didn't want anyone touching her, she decided she would just watch Mackenzie and how she got around in her brace. With a little coaxing we got Mackenzie to crawl and stand. The physio was impressed with what she was capable of doing in her brace and commented that because she was doing all that she could already (crawl, sit, stand) in her brace, there was nothing she could help with at this point anyway. So we booked an appointment to follow shortly after we visit the Dr. again for our 6 week post-spica checkup. The physio requested a prescription from the Dr. that specifies the limitations (weight, movement, etc.), if any, for Mackenzie so she knows what she can and cannot do with her.

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.

What Have we Been Up to Lately?

Just the same old, same old.

Haven't heard anything back yet about our new brace, but as I mentioned before Mackenzie is doing great now in the foam one.

She loves pulling herself into a standing position and has taken a few tumbles but is such a trooper.

Bath time is her absolute favorite and she cries almost every time when we take her out.

A little brace free time for a trike ride.

One of Mackenzie's favorite places to play

Crazy bath hair

She loves the stairs.  Good leverage to pull into a standing position

Improvising to play in the sandbox at the day home.

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.

Change of Plans

It looks like Mackenzie's cast might be coming off sooner than we thought.

Last night Brice was playing with Mackenzie on the floor and when he picked her up he thought he heard/felt a "pop".  He wasn't sure what it was though.  Maybe her cast shifting positions slightly?  Then, a little later in the evening Mackenzie was in her sitting position that we can't keep her out of now and I noticed that her leg was turning purple.  She must have been cutting off circulation or something of that sort due to the pressure the cast was putting on her thigh.  Again, not quite sure what caused it.  We monitored it quite closely and it didn't seem to be ongoing.  Also, she was quite cranky yesterday.  That could have been attributed to quite a few things: she is teething again, she has cut out one of her daily naps now that we are back at work and she is doing to the babysitters, and also, she is in a full body cast.  We feel so conflicted because any time she is unhappy we always wonder "does it have to do with the cast?".

So, last night we sent off an email to our surgeon's amazing secretary and asked her what we should do.  He only sees patients in the clinic on Tuesdays.  So with this being a long weekend, we would have to arrange an appointment for this coming Tuesday with very short notice.  She called me this afternoon and said she had shown him our email with our concerns (and a lovely picture of how Mackenzie likes to sit).  And he decided that he probably should see us sooner rather than later.

So now, instead of September 11th, we will be going up this Tuesday, September 4th.  We were told that they will do an x-ray first, but since the cast is supposed to be removed the following week they will likely just take it off while we are up there.

We are excited that the cast is most likely coming off a week early, but also worried and hope nothing major is going on and everything will be alright and there will be no negative consequences to taking the cast off earlier than projected.

Sleep and the Spica Cast

When we left the hospital with Mackenzie in her first cast we were told that we should be waking her up every 4 hours or so to check her diaper and shift her position.  I asked around on a few different DDH forums and the consensus seemed to be "don't wake a sleeping baby!".  If you remember from the post when we first got home, that first night it was no problem.  She wasn't doing much sleeping anyway.  However, after the first week or two she thankfully settled back into her 12 hour nights.  We have never woken her up at night.  We have only had one diaper leak at night and it was nothing too major, and no issues with soreness from the cast.  We figure if she had a pressure point bothering her, or something of that sort, she would wake up anyway.

Sleeping in the crib

Here is how we position her for sleep:  In her crib we propped up one side of her mattress with a few rolled up towels.  This was just to give it a slight angle so that if she did have a diaper leak at night it would drain down instead of up into the cast.  A regular sized pillow was put in her crib for her to lay on from her lower back up.  And a rolled up towel was placed for support under her knees.

Towels under the edge of the mattress

Just a very slight incline at the left

Pillow and towel placment

Sleeping with Daddy.  All you need is a pillow and a rolled up towel.

Sleeping in the Pack n Play at Nana and Papa's - same set up with the pillow and towel

This arrangement has worked for us no matter where we are.  We set up the pillow and towel in the pack n play, or on the bed in our trailer when camping.  The nice thing is everyone always has a pillow and a towel you can use for her to sleep.

Cast Check - 9 weeks down, 3 to go!

We went up to Edmonton yesterday for our cast check for this second cast.  We jokingly, but sorta seriously, asked the doctor to take the cast off.  He said no dice though, needs to stay on for another 3 weeks to make sure it can work all of its magic.  It will definitely be coming off on September 11th.  The countdown is on.

The visit was kind of frustrating.  Everything was fine with the cast.  Therefore, we had to drive an hour and a half to Edmonton and we ended up waiting for over 2 hours in the waiting room before we saw the doctor for about a minute and 37 seconds.

He said "the x-ray looks weird",  due to the angle she was laying for it with the cast.   He also told us that she will most likely be put back in one of the diaper splints after the cast comes off.  He wont know for sure, or how many hours a day that will be for until he gets a good x-ray after the cast is removed.  I also asked about Physiotherapy and his exact words were "I don't want anyone touching her".  Nice.  He later clarified that he meant until he is finished his treatment.

We asked to see the most recent x-ray, as we always do.  And he was flipping through a few of the older ones and made the comment "this is where it was dislocated".  I was confused because we were never told it was dislocating.  In fact, on our first visit I distinctly remember him saying "It's not a normal hip, it's not dislocating, but it's not normal".

So, three more weeks to go and we will be done with this cast.  I just pray that this will be the end of the journey for us and no further surgeries will be needed later.

Her new favorite thing to do is to sit like this. Can that be comfortable?!?!?

Scowl face!  This means "I'm having fun" 

How I Feel About This Waterproof Cast

I HATE it.

I asked the surgeon before she went in for the cast change about the waterproof cast and specifically whether it was equally as comfortable.  He assured me it was and he recommended it.  In fact, he said, you can completely submerge your child in a bath or the pool.  Sounds great!

When Mackenzie came out of the O.R. she was upset pretty much until we left.  I was so happy to see that free leg and I didn't really care about much else besides comforting and consoling Mackenzie.  We rushed to get the cast pedalled despite the annoyance that the tape was not sticking at all.  Later I realized that the cast was likely still a bit wet however the nurse was the one telling us to pedal it, so we did.  I just wanted to get out of there.

When the Occupational Therapist came to check out our carseat situation I also asked her about the waterproof cast and any special care instructions that would be different than her first cast.  She said that while you "can" get the kids wet with no damage to the cast she would not recommend submerging them in water.  The concern would be whether or not the cast would fully dry out on the inside.  This was a concern I also had in the back of my mind so we made the decision that we wouldn't do anything differently than we did when she did not have a waterproof cast.  Sponge baths will continue for another 6 weeks.

The main difference with the waterproof cast is the inside and"stuffing" material of the cast.  Unfortunately it is really hard to get a photograph of the inside of the cast.  In her first cast the inside was cotton and it seemed to be a solid piece of cotton with a layer of "stuffing" between that and the fiberglass.  This cast the "stuffing" is almost a plasticy mesh type material that is long strips wrapped around.  This makes the pedalling terrible because the tape will just stick to one of the layers or pieces of this mesh and that can be moved quite easily.  Pieces end up moving, coming up out of the cast, and worst of all, allowing the tape to stick to her poor skin.

This shows how the tape and stuffing come out the top of the cast.

The inside layers stick to the skin and pull away from the fiberglass

We have also been having a more difficult time with diapering in this cast.  It's not the best for shoving the smaller diaper inside as it is not as loose as the first cast in that area.  We can just fit a size 3 or 4 (depending on type) around the whole outside but it tends to shift down off the cast onto the leg that is free and then can gap and we have had a few pee accidents leaking out of the cast.  At night we do the double diaper, but during the day we just make sure to change her frequently and adjust the diaper if it seems to be shifting.  We had a large blow out after she had been in the carseat and poop got up the back of her cast.  We cleaned it out the best we could and ended up cutting out part of the inside piece that we couldn't get clean and then just taping it back into place.  We are doing the best we can.

At the end of the day, I definitely would NOT go for the waterproof cast again if given a choice.  Given the fact that we still wouldn't get her wet.  There are no plus sides to the cast and a plethora of negatives.

Look What I Can Do!

Sorry for the bad phone quality, but I didn't have time to grab our camera.  Mackenzie has started pulling herself up on the stairs, window sill, whatever she can get her hands on. Then she cries because she gets sort of stuck in that position and can't get back down.  Crazy girl!  

What About Work?

This question came up on the DDH Facebook group I am a part of so I thought it might be worth while to do a quick post about what we are doing.

We are so blessed that I am still on maternity leave (until August 29th) and because Brice is also a teacher he only had three more days left of work before summer break when Mackenzie got her first cast.  Therefore we were both able to be home with her for two whole months during the cast time.  We will both be back at work though at the beginning of the new school year.  When we found out she would be getting the cast, we immediately started planning and trying to figure out what we would do when the time came to go back to work.

A few of our options were:

• take an unpaid leave from work so one of us could stay home with her until the cast came off
• have Brice's mom come out and stay with us for the few weeks in September that Mackenzie will still have the cast (she is a retired school teacher); or,
• send her to the dayhome that we had lined up already

It took Mackenzie probably about a week and a half to two weeks to get used to being in the cast.  At 9 months old she adapted incredibly well.  I doubt she even remembers what it is like to not be restricted by the cast.  After that week and a half to two weeks she got back to sleeping well and being back to her regular happy self.  If you are a parent who is not able to take an extended leave from work to care for your child in a spica I would suggest trying to take at least two weeks when they first get the cast.  

Especially now that Mackenzie only has one leg casted, but even before, we were so impressed with how well she was doing.  Diaper changes were not nearly the nightmare we expected.  She crawls around and plays independently.  She is honestly just her regular happy self.  This made our decision to both go back to work much easier.  

The original plan was to have Mackenzie's Grandma come and stay with us for the 2-3 weeks she would still be in the cast.  After that she would go to the dayhome.  However, with the ease of caring for her in the cast, we decided to leave the decision up to her day home provider about whether she would like her to start there from the get go.  She seemed to be quite willing to take her despite the cast.  We went and visited her the other day so that she could see what the cast looked like and how Mackenzie adapted with it.  She had done a bunch of research online as well, and like us was impressed with how well Mackenzie was doing.  She told us she would be happy to take her.  In fact, she seems more concerned with dealing with Mackenzie's dairy allergy than the cast.

So, rather than have Mackenzie have to make two transitions, first with Grandma and then to the day home, we decided to go straight to the day home.  We are hoping for the best come September!

The 6 Week Cast Change

Who knew a person could be so happy about their kid being in a cast?!?!

The actual cast change itself did not go so well in terms of Mackenzie's happiness.  However, we are so so so happy with the cast she came out of there with.

We had to be at the hospital for 7 am this time so didn't have to get up until 4:30 instead of 3:30 am like last time.  I got Mackenzie up, fed her one last time, loaded her up in the car, picked up her Auntie and hit the highway by 5 am.

I felt so much better about everything this time going in.  I knew where the best place to park was.  I knew where I was supposed to be going.  I knew what the procedure would be when we got there.  I also knew that my baby would for sure be coming out of there with a cast on.  I was much better prepared.

After we checked in at the Day Ward we had to wait in the waiting room for awhile before they called us back to take Mackenzie's weight (kinda silly with a huge body cast), give us some lovely striped hospital pyjamas, took her blood pressure and put the numbing cream on her hand for the IV.

She must remember being there last time.  As soon as any nurse would come near her and try to touch her she would immediately start crying and freaking out.  

After she was suited up, we headed back to the waiting room for what felt like forever.  She was chattering away, entertaining the room like usual.  But then she started to get tired and cranky.  Finally we were called back to the OR holding room (that's what I call it, it's basically just another waiting room in a sightly different area).   The surgeon came to talk to us.  He was not our usual surgeon due to holidays, OR closures, yadda yadda yadda.  I actually really liked him.  He came right over and crouched down to Mackenzie and said "hi" to her.  Then listened and answered as I pulled out my phone with my list of questions.  The anesthesiologist touched base with us.  Then a resident that would be working with the surgeon, then a nurse.  Finally we were ready to get the show on the road.  

Mackenzie would not even consider leaving with the nurse so I had to go with her into the operating room.  Of course she started crying and getting upset as soon as I laid her down on the table.  I had to hold her arms and head down as they used gas to calm her.  As soon as she relaxed they told me I could leave.  I'm happy that all went quite quickly.  It would have been hard for me to watch much longer.   

My sister and I headed across the street to pick up the necessary Tim Horton's coffee and a bagel and yogurt to sustain us until we would be able to get something else to eat.  And then we commenced to waiting some more.  I don't know why, but it felt to take forever this time.  Maybe I was expecting it to be a lot faster than last time.  It definitely wasn't.  Finally our lovely pager went off and signalled that it was time to go back to the recovery beds to see Mackenzie.  

She didn't seem to be quite as upset as she was the first time when we got back there so immediately I was hopeful.  She also had one entire leg free from any sort of cast!  I was so excited.  I scooped her up as quickly as I could despite all the cords still hanging from her arm and tried to settle her down.  I brought a bottle this time after the disaster of attempting to nurse her last time.   She would drink a little and then cry and drink a little and cry.  She was very agitated and upset.  A nurse brought a popsicle for her to try which she took a few sucks of but then just went right back to crying again.  Nothing seemed to settle her down.  Our nurse gave her a dose of Tylenol and I just walked and bounced her the best I could despite her attachment to the machines.  They wouldn't unhook them until she had successfully kept her bottle down.  

**photo of new case removed due to inappropriate comments

I was planning ahead this time after waiting for what felt like FOREVER last time for the Occupational Therapist to show up.  Before Mackenzie even went in for her procedure I asked the nurse to call OT and tell them we would be needing someone to bring up one of the Hippo carseats to get us set up.  I always felt quite uneasy about the safety of the foam rigged carseat set up we had going on with the first cast.  

A free, but scaly leg

Maybe I jumped the gun a little bit because our OT showed up while Mackenzie was still very very upset.  I was happy to see Chelsea again, she was the same one we had last time and was one of the few people in the hospital to give us any peace of mind last time.  She said with only one leg casted Mackenzie's own carseat would probably be better.   And we actually only needed a small piece of foam behind her back and one under the knee of the casted leg and we were good to go in what looked quite safe.  While Chelsea was still there figuring out her paperwork the doctor stopped by and told me that everything went really well and that her hip was stable.  Come back in 6 weeks to get the cast removed.   

We asked about the waterproof part of Mackenzie's new cast.  The doctor said you could totally submerge her in the tub or pool.  The OT suggested that she wouldn't do it herself because she would worry about not being able to get the skin completely dry under the cast.  It is nice peace of mind though to know that if she has a big mess we can wash the cast.  It is not a Gortex liner, the cotton part of the inside of the cast is more of a plasticy foam type material.  Seems like it is comfortable.  I hope she feels as comfortable as she did in the non-waterproof type.  

With all the technicalities out of the way, we now just needed to wait for Mackenzie to settle down so we could head home.  She did manage to finish a bottle and would occasionally get distracted by cords, the mirror, foam, or Aunties funny faces, and would settle down for short periods of time but she always started back up again.  Especially if a nurse tried to come anywhere near her.  Except the nice nurse who blew bubbles for her and played peek-a-boo.  She liked her!  

Auntie Julie and I pedalled her cast the best we could while I held Kenzie and Julie stuck the tape.  I think the cast was likely still a bit wet because the tape was not sticking very well at all.   Once the pedalling was done I nursed Mackenzie and she finally seemed to settle back down to her regular happy self.  We loaded her up into the car and she slept the entire drive home.  

She is so happy to have her leg free.  She kicks and kicks and kicks it all the time.  The skin is quite scaly, we will need to make sure we moisturize a lot.  I could not be happier with the cast we came away with.  She is fitting in her regular high chair (the one we bought to fit the brace), rode in a regular shopping cart.

I fit in a shopping cart again!

Things People Say

One thing I have noticed is that people will come up to you in many different places and ask you about your kid when they are wearing a full hip spica cast.  I was somewhat prepared for this, thanks to advice from our chiropractor as well as reading some experiences on other hip baby blogs.  I am still flabbergasted that complete strangers feel the need to come up to you and ask you questions about your child.  We would never, ever, do that.  We might wonder to ourselves what happened, but would not go up to someone and ask them about it.  I supposed it is just different people's personalities.  And I don't really mind most of the time.  I feel like it is good opportunity to educate people on DDH.

Here is just a sampling of things we have heard:

In a cupcake shop - "Oh, is that for her hips?", then goes on to explain they had another regular customer who came in all the time with their child in a spica cast for her hips

In the airport sitting and waiting to board our plane - "If you dont mind my asking, what is the cast for?"

Several different waitresses in restaurants when they notice the cast -  "Oh....what happened to her legs?"

Two old ladies as we walked by them with Mackenzie in the stroller - "Oh my goodness!" -- they didn't say anything specifically to us, but the exclamation was definitely loud enough for us to hear.

A receptionist in the bank while Brice got money out of the ATM was making small talk and asked "How is she doing with the cast" this was without ever asking what it was for.  Near the end of the conversation she mentioned she knew someone else whose baby had DDH.

"What happened to her leg(s)?" is definitely the one we get the most often.

"Did she break her legs?" a lady asked me as I waited in line to pay at the grocery store.

When Mackenzie first came home with the cast Brice was feeling a bit down and a coworker noticed.  She said to him "well, you know it could be something way worse".  Which is true.  It could be.  We know that.  However, it still sucks.  And you need to be allowed to mourn.

When she was in the diaper splint I also got a few interesting ones.  I was carrying her on my hip in Costco one time and a lady asked "Is that thing so that it makes them easier to hang on to when you're carrying them?" - Nope.  But it actually did make her easier to hold onto :)

Also, at my drop in Breastfeeding group a mom asked me what it was for.  After I explained she said "oh, I thought it was for attaching toys to so they don't get away from her".  She got a serious side-eye from me for that one.  Yes, I put my daughter in this awful contraption to attach toys to the velcro.  Yeesh.


Thankfully we have yet to experience anyone being completely rude to us.  Brice and I joke that if someone said something like "what did you DO to your baby?" (which I read actually happened to someone), that we would spin a story like "she wouldn't stop crying, so we threw her down the stairs". In reality, there is no way I could pull that off with a straight face.

We do get some stares and I always watch people to see them turn and say something to the person they are with after they walk past us.  It honestly doesn't bother me as much as I thought it would.

So, if you are curious, ask away.  I will tell you our story.

Cast Change is Coming Up

Mackenzie's 6 week cast change appointment is coming up soon.  Exactly 6 weeks would be August 2nd.  However I hadn't heard anything yet and I called the hospital and apparently they are having some issues finding a surgeon and OR time due to people's holidays, OR closures, etc.  That does NOT make this momma happy.  When I called on Monday the secretary to our surgeon told me that she was hoping to be able to get another surgeon to do it on the 30th.

This is terrible for two reasons:

1) I would much prefer our surgeon to be the one to do the procedure.  We have talked to him a lot about how things are going to go, asked a million questions, and he is the most familiar with Mackenzie's specific situation.

2) Brice is leaving tomorrow for Costa Rica and will not get home until late the evening of the 30th.  This means that I would have to go by myself up to the hospital with Mackenzie.  Thankfully my lovely sister has agreed to come with me if that ends up being the case.


I did not hear back from the hospital yesterday so I plan on calling and harassing them this afternoon to see what the plan is.   I like to have a plan and not knowing well in advance stresses me out.

We also are not sure if we want to go with a waterproof cast as they mentioned we could have.  Unless it is equally breathable and comfortable, we would likely not go with it.  My understanding is that we obviously would still not be able to give Mackenzie a bath or anything of the sort so then I'd just be essentially keeping it dry all the time for fear of being able to dry it out after getting wet.  Also, we have been lucky enough to not have any smell issues with the cast thus far so I'm confident we can do that again for the next cast.


I am not tech-saavy enough to figure out how to put a poll in so leave us a comment below about what colour cast Mackenzie should get next.  They seem to have almost every colour under the rainbow.  Should we stick with purple?  Go with the obvious choice of pink or something entirely different?

Update:  Monday it is for the cast change!  Because that's 4 days earlier than the 6 weeks, hopefully we can lose 4 days at the end when it's time for it to come off!!!

Ivy Rose Spica Chair

The day we got home from the hospital with Mackenzie in the spica cast we went straight to work searching online to find out how to make her as comfortable as possible.  One of the things that kept coming up again and again were Ivy Rose Spica Chairs.

Stephanie makes absolutely beautiful chairs custom built to each individual kid's cast.  Every spica cast is different and may even vary from one cast to the next in the same child due to getting the hips in the most stable position for that individual.  After some conversation back and forth via email we decided on a basic "jelly-bean" chair.  While there is the option to have your chair personalized with Stephanie's beautiful paintings we were in a hurry to get the chair as soon as possible and honestly didn't have the brain power at that point to decide on a design.

We were told that there were two other chairs that she had on order to make on Monday but that our chair would be built and shipped on Wednesday.  We received it that Friday so we only went 1 week in total without having it.  And very much appreciated the rush to get it to us.

We decided on purple for the chair.  It has a painted table top and on the reverse side is chalkboard which would be lots of fun for a child a little older.  It was personalized with Mackenzie's name on the back of the chair and a nice message on the chalkboard.

The seat is cut out to accommodate a child in a spica cast so that they are able to sit upright.  There is a "seat belt" type strap to hold the child in place.

Mackenzie uses the chair for all of her meals if we are at home.  When she has finger foods I put down a plastic placemat on top of the table to protect it a bit.  She also plays in there regularly as her only other option is to be laying on the floor on her stomach.  We try to keep her off her back when she is awake because she sleeps on her back.

Her new favourite game is to take the toys from the chair and drop them over the side.  Usually she starts with the table full of toys and in about 10 minutes it is empty!

This chair has been amazing.  I don't know what we would do without it.  Thank you Stephanie for building these chairs for our Hip Kids.

I only wish we had a more portable one so we could take it with us wherever we go.

My hope is that we will be able to pass this chair on to someone else who can use it when Mackenzie is finished with it.  It was quite expensive to have it shipped up to Canada and hope that it can be used and loved by someone else after we are finished.

4 weeks down!

We are 1/3 of the way finished with the spica and only 2 weeks away from our cast change (which we still don't have an exact date for yet, I need to call the hospital).

I can't believe how quickly time has gone by.  The first day home we didn't think that we would even make it to day 2.  We have settled into our new "normal".   And it really is pretty normal.

I'm still ready for it to be September 13th.

Leaving on a Jet Plane

We have returned from our 9 day visit with Mackenzie's Nana and Papa in Victoria.  All in all the trip was a success.  And really not that much more difficult than I think it would have been without the spica cast in tow. 

The foam padded carseat

I think I mentioned here before that she didn't fit properly in the Britax Hippo seat, the special carseat that they make for kids in spica casts.  So instead we have her regular Evenflo Triumph seat that we bought to fit her brace and it is doctored up with a bunch of foam underneath her.  We brought that with us and checked it at the main luggage check in the airport.  We also brought our Bumbleride Indie stroller with the pillow underneath her and wheeled her through the airport in that and gate checked it right at the plane.

Hanging out in the stroller waiting in line for fish and chips!

Both on the way there and the way back we were able to get the third seat in our row "blacked out" so that no one else would be sitting with us.  People are pretty accommodating when they notice that your baby is in a full body cast.  On the way home the attendant checking boarding passes and ID's even came to our seats in the waiting area and got ours from us and checked us in early so we could board the plane before they even called for pre-boarding.  How is that for service?

Of course in the airports she was up to her usual tricks of being as cute as possible and was entertaining everyone around us.  Makes you feel pretty good when despite everything people are just going on and on about how cute your child is.

The flights themselves were pretty short.  Just over an hour so it wasn't too long to try to entertain her.  On the way there she spent about 20 minutes playing with Daddy's face, and another 20 minutes shaking a wipe around.  She also like looking at and touching the TV screens in the back of the seats.  We took turns holding her.  We also laid her down for a bit on the middle seat between us but that was short lived as she couldn't see everything around here and wanted to be upright.

We definitely missed the spica chair at Nana and Papa's especially for feeding her and keeping her entertained while we ate.   But we made due.  One person would hold her while another fed her.  And Nana and Papa had enough new interesting things to explore that she seemed to be ok to just hang out and crawl around on the floor most of the time.

Checking out the seat life at the Aquarium

We went out to eat in several restaurants and just brought in her stroller and had her sit in there while we ate.  She doesn't like to be in it when it's not moving so there were a lot of snacks being given out to keep her occupied long enough to scarf down the food.  We toured around the Inner Harbor of Victoria, went to the Aquarium in Sidney, took in an Imax movie and Mackenzie even spent a full 24 hours with Nana and Papa while her mom and dad jetted on the ferry over to Seattle for a day.

For sleep she slept in a pack n play with the same adaptations as in her crib at home.  A pillow under her head/neck/upper back and a rolled up down under her knees.  She slept the best she's slept since the cast there!  Grandpa claims its because of the heavier air at sea level.  Whatever it is, I'll take it.

Passed right out!

I wish we had a quick short answer to give people when they ask about Mackenzie's cast.  Through the airports as well as on many of our outings in Victoria we were constantly being asked about it.  The quickest response I have come up with is just to say "She has hip dysplasia.  Her hip didn't develop properly so they did a procedure to put it in place and the cast is stabilizing it".

All in all the trip was a total success.  We had a great time and Mackenzie just rolled with everything like she always does.

Camping in the Spica

This past weekend was our first time camping with a baby and our first time camping with a baby in a spica cast.  I imagine it was a bit easier to deal with the spica part since we had no previous experience of what camping with a baby would be like.

In true Mackenzie fashion, she took it like a champ.  She loves being outside so she really enjoyed that aspect of the trip.  We brought her spica chair with us and she would eat her meals there.  Our bed doubled as a diaper changing station.  We went for lots of walks.  And, besides that she didn't ever want to go to sleep for fear of missing any of the action, she slept through the night right until 7:30 am both nights we slept out there!

Having some snacks in the spica chair

The only negatives really were that this weekend was the hottest one yet so we left a day early and on the last day spent some time in our friend's air conditioned trailer to try to avoid her getting sweaty.   There were also a ton of mosquitos so when she was outside she was either in her stroller that has the net or I doused her in lots of California Baby bug spray.

Strolling with mosquito protection

All in all I'd say the weekend was a success!  We are looking forward to hopefully doing some more camping later in the summer.

Cooling off with some water and no clothes

Some crawling time in the trailer