Tag Archives: impacts

Surgery, the next phase of Mikaylas Journey

Some of you may have read a previous blog in which we were coming to terms with the change in circumstances we were experiencing when Mikayla became flagged for orthopaedic surgery.  If you  haven’t read it, you can catch up on it via this link:  http://www.sharemikaylasjourney.wordpress.com/2014/02/27/growth-friend-and-foe       So at that point, prior to the rigorous testing and analysis that was to follow, Mikayla had been flagged for soft tissue surgery, having developed contractures in both her knees, and having had a poor result from her last botox A intervention back in September 2013.  Botox A had been our friend for many years with Mikayla undergoing something like 13 or more of these treatments to her lower limbs starting at about 2yrs old!

botox day 2006-08-29 (3) DSCF0827 6 June2009 (121)

In a nutshell the Botox A injections were delivered under anaesthetic to spastic muscles.  The idea is that the Botox inhibits the signals causing spasticity from getting through, allowing a window of opportunity to work on building strength in weak muscles and to stretch those that need it through intensive therapy in the weeks following the injections.  The botox effect is only temporary wearing off in a number of weeks (sometime after just 6 weeks for Mikayla, but sometimes lasting longer).  During this time though, Mikayla was able to make some really good physical gains, benefitting from the intensive stretching and strengthening that she did both in her therapy sessions and at home.  Then the ongoing use of various equipment, therapy and home programming (stretching, strengthening and patterning) continued, in order to simultaneously develop her abilities, and try and reduce the toll Cerebral Palsy takes on her body as much as,  and for as long as possible.

Having developed contractures from her significant growth, it was deemed that botox was no longer useful in helping her and we were thrust into this next phase, the phase of surgical intervention and in the meantime “maintenance”…something else we were unprepared for at this point.  Now, rather than improving what she was able to do, our focus was to turn to maintaining as much of her mobility as possible, and try to prevent the contractures from getting worse while we waited for “the process” to happen. Not an easy task, as during this past 12 months, Mikayla has continued to grow (as children do at her age), and we have seen it become more and more difficult for her to do some of these hard earned achievements – like maintaining a standing position, even with support, taking assisted steps, and riding her modified trike.  The compounding affects that reduced functional ability in her legs has for her is frustrating.  Deforming bones, and knee contractures make it even more difficult to make her legs move the way she wants, and more difficult to work against the forces of gravity, spasticity, tone and weakness on her body.  Although she still tries to do as much as she can, it means that she has to spend much more time sitting in her wheelchair, which means muscles used for standing and transferring get weaker, and her leg muscles are in more danger of shortening because they are in a bent (flexed) position for longer periods of time….. the less functional her legs become, the more she has to be in the wheelchair and so on.

Having undergone lengthy testing and measuring, discussion and analysis since that day, Mikayla will soon undergo significant orthopaedic surgery to both her legs.  Some muscles will be lengthened and her bones realigned to counteract some of the damage that couldn’t be prevented even with all the interventions we have been able to provide for her so far.  Without this surgery, Mikayla will continue to lose function in her legs, will be in more pain, and will continue to lose some hard earned physical independence.   The good news is that all the things we have been able to provide, have put Mikayla in the best position she could be in to undergo this surgery, and her drive and determination will stand her in good stead to face the long road of recovery that lies ahead.

The rehabilitation that she will require after the surgery, is extensive, and the degree of success she has in regaining abilities such as standing, stepping,  and transferring, is largely dependent on the type and  quantity of rehabilitation therapy we are able to provide for her for many, many months following the operation. Our goal is to be able to provide Mikayla with the therapy and equipment that will give her the best chance at successfully regaining the level of physical ability and independence that she has fought hard to acquire throughout her childhood, and to have the chance to continue building on these as she strives to reach the best level of physical independence that she can as she grows up.  Imagine the difference it could make as a teenager or adult to be able to transfer yourself out of your wheelchair, versus always having to rely on the help of someone else, or on the use of a hoist for example, or to be able to walk from one room to another using a walking aid rather than having to transfer into a wheelchair at all??

To that end we are currently fundraising towards the expenses we face for therapy and equipment over the next 12 months, to give Mikayla the best chance at getting back to her best level of physical ability – and possibly even to surpass it!  If you want to be part of making this difference to Mikayla, online donations can be made to her charity webpage  at www.developingfoundation.org.au/family/mikayla from anywhere in the world   Here you can also read more about her story, the costs of therapies that can help her, and what her own goals are.  The next 12 months will require our concerted efforts and will leave little time, energy, or resources for coordinating and running fundraising events, so any support is greatly appreciated.

As we face this new challenge in Mikayla’s journey we appreciate the continued support of our family, friends, and all those able to contribute in some way to making a difference to our little girl, in the lifelong challenges she faces with courage and a smile. Mikaylas own Kidwalk Donated by the Lions  

Post Intensive Post 2

Just to keep it balanced, I thought I would share todays events:

Mikayla was very tired today and didn’t wake up until late this morning (when she doesn’t wake on her own I know she needs the rest, so where possible I let her sleep as long as she needs.  These days I find this happens less than it used to!).

Despite the fact that I was organised and ready, this meant there wasn’t time to do the warm up routine of stretching and dissociation exercises, however, because I am trying to work out a new routine, I decided that school would have to wait this morning so that we could do at least some of them.

There was no walking to class today, and this afternoon, although Mikayla was keen to get into her KidWalk for a little bit, taking steps didn’t come together as well as yesterday.  Now, this could have been for any number of reasons: possibly because she was tired; it was a wet/cold day; the coordination of movements just didn’t kick in today;  she mightn’t have moved round as much during the day at school because it was wet; she may have moved around more or differently (eg crawling in the classroom), she mightn’t be 100%,  there could be so many factors but that is just a few examples. So instead of walking,  she did do some “static standing” at the computer (we have made a height adjustable computer desk with a cut out for her to use) to do part of her homework, then she transferred into her supportive seating to finish the rest.

So every day is different.  Some days you just cant fit stuff in despite your best intentions.  Sometimes despite your best plans or efforts, things just don’t come together for one reason or another even if you can “fit it in”.  And in Mikayla’s case at least, her level of ability can be quite variable, and can easily be affected by a variety of factors that probably wouldn’t impact on others much at all.    For Mikayla, with her CP, the affects of fatigue, tiredness, illness, are far more pronounced and can significantly impact on how well she can do what we might think of as even the most simple of daily living tasks (remembering quite often these tasks are in fact NOT “simple” to her anyway!).

So the important message here is to do what you can when you can and not to be too discouraged on days when it doesn’t work out, because there is bound to be plenty of those 🙂