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.

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.

One week down, 11(ish) to go

We have survived the first week of Mackenzie being in the spica cast.  Here are some random thoughts and tidbits from the week:

• Each day seems to take forever, but the week went by *fairly* quickly.

• We don't actually know for sure how long she will have to be in the cast so the count down is a little anti-climactic.  We also have not heard back regarding any of our questions for the surgeon. 

• She has started rubbing the hair off the back of her head like a newborn baby because instead of being able to roll over in her sleep she turns her head back and forth, back and forth.  This is exacerbated when she is crying.  I hope she doesn't rub it totally bald because she is already a little lacking in the hair department!

• It's really difficult because she can't tell you what is the matter.  When she cries I never know if she is uncomfortable, the cast is bothering her, or if it is just something "regular".  She seems to be a lot more cranky and irritable than pre-spica.  

• Sleep has been terrible!  She has always been a great sleeper (12 hours through the night since about 3 months old minus a few weeks during teething) and now she is waking up several times in the night.  Often she will be awake for an hour and a half at a time in the middle of the night and nothing seems to help unless one of us just holds her and lets her "play".   When I put her down for naps she literally clings to me and starts crying as soon as she sees the crib.  

• Yesterday I finally went through her closet and dresser and had to pack up so many cute clothes that have never been worn and she will never get to wear.

• Snuggle your babies and don't ever take that for granted.  She is really difficult to hold, let alone cuddle well.  She has never really been one for cuddling, but now its not even an option.  Her cast comes up so high that I can't even rub her back to try to comfort her when she is upset.  

• Her resilience is astounding.  She is pulling herself all over the house.  Brice is trying to "teach" her how to roll over and she did it once on her own on the third day in the cast.

• In a very scientific experiment I weighed myself with and without her and she is about 20 pounds with the cast which is only 2 pounds heavier than pre-cast.  She feels about 10 pounds heavier.

• Thankfully she loves the stroller so when she is especially cranky and refusing to sleep I just throw gentle place her in the stroller and go for a walk.  I'm dreading the hotter summer days where this won't be an option.

• It's tough to work through the feelings (this is Brice writing). The lack of sleep and her crankiness is getting to me. As I was telling coworkers, I understand some kids don't sleep well at  night, I could live with that or I could live with the Spica (at least I tell myself I could), but both is just unruly. I blame the cast for everything. If she's cranky, it's the cast, if she wakes up, it's the cast, if she cries, if we can't go for a walk because it's hot, if I can 't go for a beer after work, if I have a bad day, etc, it's the CAST. One week down. 

Spica Cast - Day 3 - Some Emotions

We flip flop back and forth between being so relieved that Mackenzie is doing so well with the cast and being worried and scared about what the future might hold.  We have read a lot of stories where children need further treatment, often times for year and years, after the cast comes off.  However, there are also lots of stories where the problem is fixed and the child has no hip concerns at all afterwards.  I think a lot of our "worry" stems from the fact that we have never really been told or had it explained to us what the severity of Mackenzie's dysplasia is and how it compares to other cases.

Today I went out to find some onesie's for her in a larger size.  We had been just putting a t-shirt on and pulling it down over the cast but she picks at her diaper so we'd like to cover that up.  I had a bit of a moment in the store when I was looking through all the really cute summer clothes, swimsuits, etc that she won't get to wear this summer.  Then while standing in line there was a "normal" baby about her age with his mom who was waving at everyone and happy as could be.  It made me sad.  I wish my emotions would stop flip-flopping all over the place, but it is nice that I can feel happy, hopeful and optimistic with just one look at my smiling content baby.

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.