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Looking to pass on our Spica Table

*****Passed on to another family******


t appears we are in the clear with our new little man and we would like to pass our Spica Chair/Table on to another DDH family that could use it.  We are located in Central Alberta but would ship it if you cover the shipping costs.

It is purple, was made for Mackenzie when she was 9-12 months old and has her name on the back.  It could quite easily be painted another color.  You can see pictures at this post here:  http://mackenzieshipadventures.blogspot.ca/2012/07/ivy-rose-spica-chair.html

Please let me know if you would like our chair.  Leave a comment with your email and I will get in touch.

Baby #2

I meant to write this post while I was still pregnant, but life got ahold of us and I never got around to it.

We had our second baby on April 18th.  A boy!  Lukas Ryan Unland

Our Orthopedic surgeon had recommended that for future children we make sure their hips are checked really well and do an ultrasound at 6 weeks for added reassurance.  

My labor was really fast so my doctor was not at the delivery.  I made sure to tell the doctor that delivered Lukas to check his hips really well due to the family history.  They also had a paediatrician come into talk to me because of some of the medication I am on and I asked her to check his hips again.  Then, the resident who was helping with my delivery was the one who discharged us and she knew how I had been asking so said "I'll just check his hips one more time for you".  At our one week check up my own doctor also checked his hips.  I think they probably all think I'm neurotic, but I want to be able to have early intervention this time to hopefully avoid spica casts and all that jazz if at all possible, if we end up with a hip dysplasia diagnosis.  

So far his hims seem "perfect" as our doctor put it.  

She was still willing to humour me with a requisition for an ultrasound at his six week appointment, so we go in for that next week and I will update after that.  

For now, we are happy for healthy hips and enjoying the new addition to our family.

Thanks to Wild at Heart Photography for the newborn photos

What Have We Been Up To Lately?

Nothing new to report on the status of Mackenzie's hips.  She is still doing great and we are no longer seeing our Orthopedic Surgeon.

I do have some concerns because she continues to sit in the "W" position as her preferred sitting position.    I used to always just say "feet in front" and she would comply.  Now I try to make it a fun game to get her to sit "criss cross applesauce" in a cross-legged position.

An example of her sitting in the "w" position

I asked on the DDH Facebook group and it seems to be quite common in "hip kids" as their trunks are not as strong so it provides a more stable base.   Here are a few links to articles regarding the "w-sitting".

http://www.learninglinks.org.au/wp-content/uploads/2012/11/LLIS-25_W-Sit.pdf

http://starfishtherapies.wordpress.com/2011/09/28/w-sitting-revisited/


Other than that she recently started Gymnastics and is loving it!

One Year Cast Free

I can't believe the one year anniversary of being cast free has passed and I totally forgot about it.  In fact, I had to look back through the blog to see what date it even came off.  Honestly, the cast and Hip Dysplasia in general have been the furthest things from our minds.  Mackenzie is walking and running and jumping and climbing and has totally caught up with other kids her age in terms of her gross motor skills.  I talked to our pediatrician and she told us that there is no way for the hip bones to "regress" back once they are proper position.  Every once in awhile this summer we would stop and say "remember last summer when she was in the cast", but it, and hip dysplasia, are now thankfully a distant memory.

New Runner brand glider bike

Another Great Resource

Check out this website: http://www.hopethehiphippo.com

Lots of information for you whether you are starting your DDH journey or in the middle of it already.

The book is great for older children to help explain to them what is happening and what will be happening to them along their journey if surgery and a spica cast is in their future.   I purchased a copy for Mackenzie to hopefully read with her when she gets older so she can understand why she is in that "crazy cast" in her baby pictures.

WE HAVE NORMAL HIPS!!!!

I figured that required shouting!

I can't believe it took me so long to get this on the blog.  More important things I suppose, like running, jumping and spending as much time outside as possible, took priority.

Playing with her favorite new toy - the water table!

We had an appointment with our surgeon on April 23rd (I am going to back-date this post for record keeping purposes).  I was a little bit nervous going in because we had always been told that we need to see continued improvement each time.  If her hips stop improving then we would be looking at an Osteotomy when she was 3 or 4, which is a surgery to cut and change the shape of the bone that makes up the hip joint.

As per usually Mackenzie freaked out when we went into the x-ray room.  They usually only allow one parent in but we asked if we could both go since we knew she would not be happy.  It took both of us holding her down to get the picture.  I hate that part so much.

Then, back to the waiting room until we get called in to see the doctor.

We got the absolute best news we could have gotten.  Her hips are in the normal range!  The doctor said as far as she is concerned her hips are both normal (the left was the one affected).  She should have no future issues except for a slight increased risk of early arthritis but that is a long ways down the road.  We also never have to go back!  Woohoo!

Needless to say we are over the moon.  From my readings and participation on the Facebook and Yahoo groups DDH forums it is not very common that a child would be done treatment after "just" a reduction, usually they go on to need surgery.

Of course now I have millions of questions like: can the hip regress, what do we do if we notice weird things like limping, etc.  But I guess we will cross those bridges when we get there.

 We are excited for a "normal" summer with splash parks, the beach, bouncy castles, cute summer clothes (I may have gone a bit overboard after our endless onesies last summer) and just enjoying life.

Thanks so much to everyone for all of your continued support.  I will try to "check in" on here every so often, but as with lately, I likely wont post very frequently.

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

Merry Christmas

I know I haven't been updating much lately, but there isn't really much to say.  We got a great Christmas present on Christmas Day this is what Mackenzie started doing on a more regular basis!

She walks off and on now.  She seems to prefer to walk if it is on carpet and our main floor of our house is all hardwood flooring.  Sometimes she will take up to 20 steps across the room.  She has learned that she can't really carry things around with her when she is crawling so she has been shuffling around on her knees, pretty cute.  Upstairs she still loves to use the push toy from the earlier video I posted.  She pretty much runs around with that thing and can steer it all over.  She loves to do laps around the Island in our kitchen and have someone chase her.  I love that she is just doing all these "regular kid" kind of things.

Her walking stance is definitely wider than a "normal" kid.  She looks like she's been riding a horse for a long time.  We are hoping that with time her stance narrows, if not, we may go back to Physio and see if they have any ideas.  For now we are just so happy that she is continuing to progress!

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!