Tag Archives: independence

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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A marathon effort

On the weekend our family participated in The Developing Foundation’s 30th Annual Riverwalk Event in which families like ours can seek sponsorship for completing a 5km course to fundraise for unfunded and unmet needs.

Riverwalk 2013, was the 30th anniversary of the event. It was a beautiful spring day and we all enjoyed sharing it with family, friends, and supporters.

Although a 5km run might be a marathon for some, every step takes a marathon effort for Mikayla, and this year she was determined to have a go at starting off the course, walking. Mikayla managed to take an amazing 300 steps in her walking device, covering approximately 70metres, before changing over into her modified trike and finishing the rest of the 5km event, with the support of her team! What a massive achievement for a little person for whom simply standing up is challenge!

Mikayla, born 13 weeks prematurely, is no stranger to a challenge, facing them daily as a result of having Spastic Cerebral Palsy. We are so proud of her desire to have a go, and for the effort she puts into things she does. She takes so much in her stride, and her determined and fun-loving spirit is an inspiration to us!

Fundraising has been a necessity over the past few years where time is of the essence, and the specialized therapy and equipment that it has helped pay for, has made an enormous difference to Mikayla and to our family as a whole.

The wheelchair accessible vehicle has given Mikayla the freedom to get out and about in the community in her power wheelchair, and enables us to transport equipment such as her modified trike, walking devices, and hippocampe, making it possible to share in family activities such as bike riding, bushwalking, the beach and camping, together. Not only does such equipment contribute to her ability to do more things more independently which is important, but there are important physical and emotional benefits as well.

The cost of Mikayla’s ongoing therapy needs is largely unfunded, and has been for some time, yet it is still so important for her continued development and to help her body adjust to changes as she continues to grow. Fundraising via Riverwalk and other events we have done, also contributed to the costs of doing the NAPA Intensive Therapy Course earlier this year, the results of which were so impressive, that we are now fundraising toward the more than AU$8000 it will cost for her to do a further course in the new year.

We are very thankful to those who have been able to help make a difference to Mikayla, and to those who offer support in any of its many forms as we strive for the best outcomes for Mikayla as she continues to live with the everyday challenges that her cerebral palsy presents her. We are also like thankful for the opportunity that The Developing Foundation Inc gives our family, and others, to fundraise. Without the ability to fundraise, I am saddened to think of all the things Mikayla would be missing out on, from the physical gains she has made to the experiences she has been able to have, and will be able to have in the future.

Donations towards making a difference to Mikayla are still able to be made on line via her webpage at http://www.developingfoundation.org.au/family/mikayla or we can be contacted via teammikayla@hotmail.com
Attached below are a few photos of Riverwalk 2013.

starting off taking steps

starting off taking steps

changing over onto modified trike

changing over onto modified trike

“Will she ever walk?”

“Will she ever walk?” This is a very common question that we have been asked many times over the years. Generally what people actually mean when they ask this question is “will she ever be able to walk all by herself without any support”. The short answer to this is “I don’t know”.
In fact “I don’t know” is the answer to many questions regarding what Mikayla will be able to do that we have been asked and indeed asked ourselves over the years….see my post on “where is the road map” for more on that subject…but let me just say here, that one of the really difficult things that I have found about Cerebral Palsy is that there really ISN’T much of a road map!

I suppose “walking” is sort of an indicator for people, a measure of progress, a measure of independence, and perhaps simply an idea that if one can walk, then they don’t need so many bits of equipment and therefore life would be a bit easier. I guess in the early days, walking was one overarching goal that we hoped to help Mikayla to achieve. We didn’t know what she might be able to do, so we just aimed for the normal everyday milestones, and took one day at a time (I have a post for more on taking one day at a time too!) and never ruled anything out.

Mikayla did get the point where she was able to weight bare and so stand up with support.

Look at me, Im standing up!

Look at me, I’m standing up!

When she was 4yrs old, she did get a walking frame so she could experience the world standing up and start the process of learning to propel herself forward.

in Hart Walker

When she was 4 she received a Hart Walker and was able to do the Hart Walker Program due to a generous donation.  The Hart Walker opened up a new world of fun and was a great therapy tool to help Mikayla’s development.  It was exciting because it enabled hands free standing and forwards movement. (more on the Hart Walker in its own post)

Later she was able to progress to a Kaye Walker and take steps using that.  In the early days, I don’t think it was expected that she would be strong or steady enough for a Kaye Walker so this was a big deal and indicator of how far she had come.

Kaye Walker

Don’t get me wrong because each of these walkers was hard work!  There is an aweful lot that goes on behind the scenes that you just don’t get from a photo.   There was a lot of encouragement and perseverance required from all of us both when in a walker, and in terms of the ongoing therapy that was needed to get to each point.

So, in answer to the original question: “Will she ever walk?” ,  to some degree, Mikayla can in fact “walk”.  If we set her up with a walking frame Mikayla can use it to walk a short distance.  This is a really important part of her daily routine because walking helps her to weight bare and therefore helps her bone growth and development, as well as her muscles and joints.

Generally speaking, at this point, Mikayla uses her walker to go short distances from A to B with support eg from one end of the hallway to the other, and needs to be on  very flat not slippery surface, and generally a pretty straight course.  She has difficulty manouvering it around bends or negotiating obstacles, and she really needs supervision and support.  However, she is happy to do it,  and likes to challenge herself at times with seeing how far she can go.  There is no doubt that “walking” is hard work for her though!

In our circumstance, we feel it is important to give Mikayla the opportunity to progress her walking as far as she can, and that it is an important option for to have to use at her disposal.

But if the question is “can mikayla walk independently without help”  the answer at this point is quite simply “No”,

Is taking an unsupported, totally independent step totally out of the realms of possibility for her? “I dont know at this point”   What I do know is that there are a lot of factors that would make doing this extremely difficult for her right now.  One example of this, is that Mikayla cannot balance enough to stand up without holding onto something, and right now, she does not have the ability to stabilise herself enough to keep her body in an upright position, and she has great difficulty in motor planning meaning that coordinating all the movements required in all the parts of her body are very difficult to do all at once.

Is it likey that she will take an unsupported step sometime in the future? “Given what we know at this point, it is probably not  likely” ………. but is it impossible? “I dont know”

So for now “Never say Never”.  It is more than likely that Mikayla will always need a wheelchair for some things, and certainly to get any distance or to get around generally in the community.  How great would it be though if she could take a few steps to get say from her bed to her chair, or to get around within in a small space, say her bedroom?  There is no doubt that this would open up further independence and freedom, and mean less “modification” would be required for her environment for the future.

Perhaps the more important question is “Is walking at all costs the most important thing”?  The answer to that is  “Not to us”, and one day this will be something for Mikayla to decide for herself.  What IS important to us, is probably the same thing that is important to all parents regarding their children, and that is to love Mikayla for all that she is, and to help her to reach her fullest potential – whatever that might be. And of course as parents we will continue to do what we can to make her abilities in all things as good as they can be.  What the future holds, we will simply have to wait and see.

Simple Pleasures

This afternoon, prompted by the sweet sounds of laughter as my children play outside, I am grateful for the newly finished cementing and paving works that have made it possible for Mikayla to independently access the outside areas or our home, and I reflect on “the simple pleasures” in life.
A “Simple pleasure” for me, is to sit with a cup of tea, watching and sometimes engaging in my children’s play – seeing smiling faces, hearing squeals of excitement and lots of laughter, and enjoying the warmth of the afternoon sun as the crisp air of the Autumn eve starts to roll in.
A “simple pleasure” for the children, is to play. To play with one another – sister and brother. To play independently (without an adult ‘helping’). To enjoy a sense of freedom, freedom to dart here and there, free and spontaneous activity and interaction with their playmate and their surroundings.
This afternoon’s “simple pleasure” has been a long time coming. It has taken a lot of different things to get here. Today, rather than considering the journey and all it has entailed to get to the point of experiencing this particular one of life’s simple pleasures, I am just going to soak it up, relish it, and be thankful that it is happening :). I might revisit how we got here another time.