Monthly Archives: February 2014

Growth – friend and foe

IT is lovely to watch your children grow and blossom though the stages of childhood. All of us with little ones would be familiar with the phrase “My how they’ve grown” so often uttered by those who havent seen them recently or who don’t see them often! The joys that come with “growing up” and being able to do more things, as well as the benefits which come with deeper insights and a greater level of understanding of things in a broader context.

Mikayla experienced significant physical growth throughout last year.
Unfortunately, for kids with CP there is a “foe” in this growth as well. With growth comes increased weight and height which not only means that little bodies need to constantly relearn how to operate under additional forces, but also weaker muscles are exposed under the strain of greater gravitational forces and the strain of supporting heavier weight. Also, muscles affected by spasticity simply dont stretch enough to keep up with bone growth which means they also end up being shorter than they should be. In Mikayla’s case, her knee joints cannot acheive their full range of movement anymore and this called a contracture. Contracture is a term we had heard before – it was something that we needed to avoid, and stretching, strengthening, positioning etc have all partly aimed towards the goal of “not getting a contracture”! Although we have been lucky I guess to succeed in “putting them off” up to this point, to find out she now has contractures still feels somewhat like we have failed her in some way, (even though, we are told that it was more than likely inevitable that she would get some sort of contracture(s) of some degree at some point).

Anyway, despite our best efforts Mikayla’s muscle growth has not kept up with her bone growth and this has resulted in “contactures” in both her knees and probably her hip flexors too and at our last appointment with her orthopaedic specialist we were told that she was going to need soft tissue surgery. The plus side of that is we have still managed to avoid bony surgery (ie hip surgery) to this point at least, and the longer that can be put off too, the better I am told.
But still…..surgery???? THAT was not on our radar at this point! We have been monitoring her hips very closely under the hospitals hip surveillance program and have been hopeful that we would manage to avoid hip surgery….which we have so far. We knew that we were doing well if we could get to around 8yrs old without having any surgery, and with Mikayla having turned 9 we thought we had pretty much dodged the surgery bullet….. so the mention of surgery quite honestly came as a bit of a shock.

In any case here we are at 9.5yrs old looking at some quite significant surgical intervention to lengthen her hamstrings and probably a number of other muscles as a result.
With one appointment, our whole situation feels like it has changed so quickly! It feels like we have gone from making gains, achieving results, working towards new skills and abilities, with a team of people we know and feel comfortable with to suddenly now being shunted across to a different area to deal with surgery and rehab! IT feels a bit like we have been dropped back into the unknown which is sort of funny because we have always remained somewhat in the “unknown” – the thing is that we became sort of familiar with the bit of the undkown we were in, and now its like we have been landed in a “different bit of the unknown” and are starting the process of gathering information, getting to know new people and the lay of the land there, and basically trying to get a handle on this new situation (which is part and parcel of the old situation) – sound confusing – IT IS! Sound a little daunting – YEP IT IS THAT TOO!

Anyway, having been travelling this journey for more than 9yrs now, we have learned a few things along the way that might help us as work though this next chapter.
1) We are more experienced at negotiating the unknown, we have more contacts within it, and we have the benefit of broader technology and social media forums to help us find our way, and hopefully to find what we need to know to make the best decisions for Mikayla’s future as we can.

2) Feeling left to the “system” (a system that often seems to break down somewhere along the line) to contact you with your next appointment SUX. So another thing we have learned is “not to wait and assume that THE SYSTEM will take care of things”. Having learned this lesson, we did not leave it long in the lap of the gods, and have been proactive in contacting the hospital department and trying to find “someone” who can be some sort of point of contact. We have done some digging around to ensure we were on the relevant waiting lists, and are getting prepared with the relevant referals etc to get a second opinion, and the opportunity to ask further questions about the options should it become necessary.

3) In the meantime, I am researching (again) and getting on with now. Ploughing though the internet to try and find the information I need to be as informed as I can about ALL the options and anything else that might help at this point from dietary considerations, to alternative therapies, to treatment and maintenance/control of the contractures that have already developed, all the while trying to ensure we are continuing with all the things we do to try and avoid any further contractures from occurring………and balance all that with everything else that comes with family life.

Although we have a very brief and basic outline of what will be involved in the process, and the sort of testing that will now be done prior to surgery so that they can determine the best course of action and timing, I have to tell you I have far more questions than answers at this point. I am finding it hard to get my head around, hard to plan for the unknown, and hard to be left without knowing exactly when and where the next solid next step is.

So as we rejoice at the gains that have been made over time, and are thankful for everything that has been done in order that Mikayla is where she is now, we continue to struggle against the growth that has come and inevitably is yet to come, in order to “maintain”. Maintain the contractures where they are at the moment and try not to let them get worse. Maintain the skills Mikayla has worked so hard to achieve, that she has learned and had to relearn with each change to her body through both growth and various intervention. Maintain her ranges in other muscles and try to prevent further contractures from forming. Maintain our vigilance in striving for the best for her and making sure she isn’t lost in the “system”.

Maintain the best balance we can in life as we work through this new phase in the journey and continue to adapt to seemingly ever-changing circumstances.

Mikayla only receives 5 partly Medicare funded physio appointments in a calendar year! All other therapy is done at our own cost. Anyone wanting to donate towards the costs of Mikayla’s regular therapy requirements or her intensive therapy programs can do so on line at her charity website at http://www.developingfoundation.org.au/family/mikayla or can email us at teammikayla@hotmail.com for other methods.

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End of Week 1 Round 2 NAPA

Well here we are at the end of week 1 having finished the first 5 days of Intensive Therapy with NAPA Center’s team that has travelled out from LA. It has certainly been very encouraging to see that Mikayla has already shown improvement at this early stage! Despite the hot and humid weather we have all endured this week, she has taken it all in her stride, and worked very hard both at her therapy and at keeping up with her school work!

There is no doubt that the daily stretching Mikayla is receiving, is having a positive effect, and though it can be a little uncomfortable for her, she is tolerating it well so far.

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Stretching is not only an important part of preparing Mikayla’s body for the workout to follow, but is in fact, an important part of our daily home routine of preparing Mikayla for simple everyday activities. Effective stretching takes time and patience and sometimes even two people.

Mikayla is already managing some activities that she had to work up to last time, so that is a good sign.   Hopefully we will see improvements in her ability and endurance for these tasks in the weeks to come, but starting here this time is very encouraging and was somewhat unexpected given the decline in many functions that we have noticed in recent months.

Mikayla’s core strength and shoulder girdle have been a big focus again this time.  The great thing is that with concernted effort, we are seeing her activate these muscles more quickly than before.   I guess this is the effect of “muscle memory”? So this is quite exciting!

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Knee walking remains very challenging and she is having more trouble getting her self straight and keeping her balance when weight shifting

 

There have been some new exercises added to her repertoire. These may become further extentions of her home exercise program, and will be of benefit to her moving forward.

new exercise

strengthening arm and core muscles and practising to maintain balance in sitting (now THAT is multitasking!)

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working arms, wrists, and shoulder girdle (started like this)

shoulder girdle - got it

“You got it Mikayla!” (finished like this!….Amazing )

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Even with effort and assistance, this is about as straight as Mikayla could get during her standing

Working to combat the impacts of growth on her lower limbs is centred mainly around strengthening areas of weakness in her legs.  Not being able to straighten your knees (due to contractures) certainly makes standing all the more difficult.  If you want to, you can try it yourself to get an idea of the experience  – just stand with your knees bent and maintain it for a count you are comfortable with, and notice the muscles that start to work.  If you couple this with tight hip flexors pulling you forward and down (so you could bend slightly forward at the hips if you want to get an idea of what happens to you for yourself) and then imagine you also have weak bottom muscles –  already it is not an easy task  – even for people whose muscles work well together, are coordinated and who do not have difficulties with balance!  Now imagine you also have spasticity (stiffening muscles), a lack of muscle coordination(muscles working against each other rather than with each other), sensory deficiencies, weakness through your tummy/core, and a wobbly pelvis…….?????

So there is no doubt that week 1 has been hard work!  And Miss Mikayla is looking forward to, and deserving of,  a break over the weekend.

taking a break

taking a break

The good thing is that through it all there have been smiles and fun and already some new achievements!

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We look forward to week 2 with some renewed hope of moving forward rather than hoping to slow down a bit of a backwards trend, and so that in itself is a good thing!

Day 1 Round 2 NAPA Intensive Therapy

It is 9 months since Mikayla started her first session with NAPA, and we are fortunate to have secured a place in this round here in Australia: – round 2 for Mikayla.
Mikayla has been looking forward to working with the NAPA therapists again, as well as catching up with some of the families that she got to know last time.
SO here we are, it is all systems go, and straight to work!
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Mikayla took it all in her stride.

I could see a lot of changes in what she could do following the last session, and what she could do right now.  A lot of these have probably resulted from growth (see more in my post growth – friend and foe which I will endeavour to get out by the weekend) . I cant help thinking to myself how glad I am that we did the last course as it certainly put her in a better position to adjust to this growth!”.  On the flip side, I wonder what things would be like if we hadn’t.  I guess, like with many things, we will never know for sure.

It seems that the team will be working on similar things this time: Strengthening glutes, quads, hamstrings and obliques; stretching tight muscles (psoas and hamstrings); trying to regain some more pelvic stability and improve core strength; working on transfer and transition patterns; strengthening arms and working on her shoulder girdle……..

I wonder how things will pan out this time.  I also wonder how quickly  muscle memory will kick in, and what she will achieve this time.  Will the contractures get in the way of progress?  Can she work against the growth and increased weight she has experienced? Will the benefits be the same or different? Is it a case of one step forward 2 steps back then one step forward 1 step  back, followed by one step forward and no steps back?  Could it even be one step forward, then another, and another?  I wonder…..

Whatever happens, I hope it helps make something a little easier, a little less effort and a little more fun……..because at the end of the day, THAT’S what MAKES A DIFFERENCE to Mikayla 🙂

So stay tuned, and we will all find out as time unfolds………