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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  

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Day 1 Post Intensive Therapy PART 2

Mikayla really was a star today.

First helping me take her through the mornings exercises, then using her Kaye Walker to get to her morning class showing greater endurance, and an improved pattern, then hearing from her “aides” that they noticed a difference and increased stability in her transfers,  managing to get through a complete day of school readjusting into that routine again and getting into the swing of things, and just a little while ago doing some time in her newly acquired Kidwalk (handsfree walking device) while she does her homework!!

What a marathon effort for her first day back at school!  I am exhausted and somewhat amazed myself as I actually write down that list.

Mikaylas own Kidwalk Donated by the Lions

Mikayla’s new KidWalk of her very own
Thanks to our local Lions Charity

Now the most exciting news today was that Mikayla actually managed to self-propel her Kidwalk !!!!!!!!!!!!!!!!!!!

This is really quite exciting!  Thanks to the generosity of “The Lions” Mikayla received a Kidwalk recently.  It was being fitted and adjusted during the intensive and she hasn’t had mch opportunity to practise in it yet.  Adjustments made the other week by her physiotherapist saw her able to take a couple of steps to “make it go”  but she was quite fatigued and flopping quite a bit.

TODAY though, I can definitely see the difference the intensive work has made to using this device!   She was never able to “self propel” any of the versions we trialled to assess their suitability for her to use.  Today she was standing straight and tall, despite being tired from her MASSIVE DAY.  Her legs remained in a good  position under her body and she was able to take a number of quite nice smooth steps forward.

From our KidWalk Trial end of 2012

From our KidWalk Trial end of 2012

I am thrilled to see this progress, and am even more hopeful now of the potential for further  progress with using this device!  Until now, I had thought it would provide Mikayla with a “hands free standing option” which is so important for muscle, bone and joint development.  I thought it would be great to practise stepping with someone pushing from behind to help propel her forward.  I thought it would be great to use as an alternative hands free play option for outside – like to use hosing the garden etc while gaining the benefits of being on your feet rather than sitting in a wheelchair!  I dared not think too hard about this providing a truly “independent hands free walking option”………but now………who knows??????

One step at a time though!  First, we shall see if all comes together again tomorrow (we know from experience that it might not), or it might be the next day, later in the week or over the weekend when we next get the opportunity or that she is “up for it”.  We will do some more standing in it to keep her on her feet – incorporating it into her daily/weekly routine where possible/practical, and we will see how motivated she is to continue exploring what she can do in it.

One day, one small step, one achievement (no matter how big or small it may seem)  at a time.

For today – this is great stuff! 🙂

Here we have another example of the sentiments expressed in our fundraising motto for Mikayla:  “Dream * Believe * Achieve * Inspire”  !

We have kicked off our fundraising campaign to be able to access further intensive therapy for Mikayla in the future (hopefully in about 6 months time).  Anyone wanting to donate can do so via the donate now button under her photo at www.developingfoundation.org.au/family/mikayla – Donations from Australia which are $2 and over are tax deductible and The Developing Foundation Guarantee that 90% of funds raised go directly towards achieving our vision for Mikayla by supporting her Special Needs.