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.

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.