Tag Archives: Kaye Walker

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

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Equipment

The need for equipment is par for the course for us.

We have found that Mikayla needs different equipment to help with different things…..from postural support, to therapy, to play, to greater independence, to back care for me…………

There is simply not one piece of equipment that does everything we need it to, and as Mikayla is a child, her equipment needs have varied over time, and many pieces of equipment have needed adjustment and replacement for growth and changes in her needs.

This list is by no means exhaustive, but I hope it gives some idea of what is/has been involved over the past 6 yrs for us.

  • corner chair with adductor pommel
  • bath chair
  • cut out table
  • static stander
  • Kelly chair
  • specialized potty seating
  • adductor straddle seat
  • height adjustable bench
  • height adjustable table with cut out
  • gator frame
  • hart walker
  • height adjustable change bench
  • wheelie stool
  • tilt stool
  • wedge cushion
  • shower chair
  • kaye walker
  • manual wheelchair
  • modified tricycle
  • modified car seating
  • power wheelchair
  • height adjustable supportive seating – Mygo Hi/Lo system
  • Flamingo Potty/Shower Chair
  • Beach/All Terrain wheelchair (hippocampe)
  • kidwalker
  • portable ramping

Also things such as:

  • AFOs
  • leg splints
  • soft hand/wrist splints
  • hard arm splits
  • theratogs
  • casts
  • swash brace
  • lipped plates/bowls
  • thicker handled cutlery
  • non-slip matting
  • slope board
  • thicker pencils

Through to more recently:

  • home modifications including the modified bathroom (after moving to a single story home)
  • modified wheelchair accessible vehicle

That’s what I can think of off the top of my head – Im sure I’ll think of more as I go along and will update the list accordingly – and with photos as they come to hand…..

Kelly chair, cut out table, hand splint
Kelly chair, cut out table, hand splint

height adjustable cutout table and corner chair with pommel

height adjustable cut out table and corner chair with pommel

Hippocampe - All Terrain Wheelchair

Hippocampe – All Terrain Wheelchair

Hart Walker

Hart Walker

Modified Trike

Modified Trike

Manual Wheelchair

Manual Wheelchair

power chair

power chair

“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.