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.

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.

Spica Cast - Day 2

The first full day home in the cast!

Despite the terrible night we had she woke up happy and content to play and seems like her regular happy self, which is so great to see.

Again, we set right to work finding products and advice to help make Mackenzie more comfortable.  We have ordered her a chair from IvyRose Spica Chairs and it should be shipped sometime next week. Mackenzie doesn't fit in the high chair we purchased when she was in the brace, so she doesn't have a lot of options for sitting upright.  Right now, one of us holds her on our knee while the other feeds her for meal times.  This chair will hopefully be used as a highchair as well as a play area for her.

We also ordered a Cast Cooler after seeing it mentioned several times by other "hip" parents online.  I think one of our biggest issues is going to be trying to keep Mackenzie cool this summer while in a full body cast.  Hopefully this will help provide some relief for her.

Brice went out and bought a ride-on trike for Mackenzie at Babies R Us, the 3 in 1 Smart Trike.   She can be strapped into it and seems to be very secure and allows her to be upright.

We also set up a "play gym" system with her bean bag chair and Baby Einstein play mat.

But she is also perfectly happy to just scoot around on the floor and play with her toys:

We took the legs off her Activity Table and she still loves it!

Army crawling around

We felt like we had so many questions that remained unanswered from when we were in the hospital.  So when we phoned to book the follow-up appointment that will be in a couple weeks, I mentioned that to the Doctors secretary.  She is so amazing and gave us a few options.  We could tell her the questions and she would ask the Dr and get back to us.  We could email her them and she would email us back with his answers and we could also call his Nurse Practitioner to ask her the questions as well.  We decided to email her the questions so we are waiting to hear back now.  

We also went for a walk with the InStep Bike Trailer that also converts to a stroller.  It only required the slight modification of adding a pillow for support.  For us this is great because it allows us to get out of the house when it is cool enough outside that we don't have to worry about Mackenzie getting too sweaty in her cast.  

Night #2 she slept straight through the night without waking up at all!  We had set our alarm to change her position half way through the night but either it didn't go off or we were so exhausted from the previous couple days that we didn't hear it.  Her diaper wasn't too wet so all was well when she woke up, happy again, in the morning.  

Spica Cast - Day 1

When we got home from the hospital with Mackenzie the first thing we set to work doing was trying to figure out how to keep her comfortable and how we should position her.  We already had our bean bag chair from when she was in the brace.  We also had borrowed another bean bag chair that was actually shaped like a chair from Brice's parents.  We tried her out in that chair and gave her one of her favourite toys, a rattling monkey, and she was just as happy as could be.  I can't tell you how happy this made us.  To see her just taking everything in stride and carrying on like nothing was any different made things so much easier for us as her parents.

We built a little "nest" on the floor with a pillow and a rolled up towel and she laid there happily on her back playing with an empty water bottle from the hospital while we got supper organized for both ourselves and her.  At this point she hadn't had any solid foods since supper the night before.

After supper we put her on her stomach, again building up supports underneath her to try to minimize the pressure from the cast, and to our utter amazement she immediately started spinning herself around and trying to army crawl.  She definitely isn't as fast as she was, she has a little extra weight and a lot less help from her feet, but she can move!

We put her to bed at about 6:00 because she was just so tired out from the day and lack of napping.  After we put her down we finally had some time to process the day and everything that had occurred.  Brice had done a lot of research online reading up about the procedure and what to expect.  I on the other hand would get extremely emotional and I think I was almost in denial to some extent and I was seriously un-prepared for caring for a child in a spica cast.  We set right to work searching online for any products or information that could help us get through the next 12 weeks with a child in a spica.

The first day was emotionally more difficult than we expected.  We took some time to mourn.  We were mourning the loss of our "normal" child, the things she would miss out on being able to do this summer.  The things we will not be able to do.  We needed to take some time to feel sad about the situation.  But to be honest, as soon as we saw our baby who was just as happy and content as ever, we were instantly taken to a good place.  We can do this.  We will  get through it.  Yes, there will be some difficult moments ahead and it will not be as "easy" as caring for a child who is not in a full body cast, but we will make it.

Night 1 in the cast was honestly terrible.  Mackenzie has been sleeping through the night from about 7 pm to 7 am since she was just over 3 months old (minus a few weeks where she was teething like a mad woman) and now woke up every hour from 6 pm until 3 am.  Most of those waking she could be quieted back down with just a minute or two or reassurance from us, she was still mostly asleep and I'm guessing that she would wake up and not be able to roll over like she would normally do and then get upset.  I did end up nursing her back to sleep a couple of times that night.  She slept from 3 until about 5 am and then again from 5:30 to 8:30 before waking up happy again for the next day.

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.