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.