Category Archives: Equipment

A bump in the road – another step taken

Mikayla has been quite unwell recently and may take a bit of time to recover as she doesn’t bounce back as easily as her peers.  Her illness has really knocked her for a 6, and she has been unable to assist with her transfers much at all.  Not knowing how long this would last or how much worse it might get,  I was just getting on with things (as us mums do)………until I  unfortunately hurt my back in the process 😦   Don’t worry,  its nothing permanent or serious enough to render me incapable of getting on with most things with some adjustments to my posture and methodology, and hopefully some hot packs and rest will sort it out soon enough. However, it does, unfortunately, greatly affect my ability to lift and bend in attending to Mikayla’s needs at the moment, and as a result, has forced me to face up to the significant impact that an injury which affects my ability to assist Mikayla has.   Although I have been conscious of this for a long time, our current situation, has forced me to think even more carefully about how I do things and has suddenly brought the issue up higher on the agenda and meant confronting the reality of my baby’s size (length) and weight.

The fact is, my 1lb4oz baby, my little girl, is growing at a rate of knots and is now a big girl 😉 getting closer to adult size every day.

    6   rocks   riverwalk

However much I want to avoid thinking about it, I simply must be more mindful that the risk of injury has increased – particularly at times like this when she is not able to help as much or as often.

In working towards helping Mikayla gain physical skills and capabilities that contriubute to her overall level of physical independence, we encourage and assist her to do as much as possible of a given task independently (time, resources, and priorities permitting).  The level of assistance she usually needs varies according to the task at hand combined with a number of other factors, and can fluctuate.   Full assistance can be required at times but lifting is generally reserved for when she is very tired or ill,  where it is necessary in order to give her a fun experience, or out of sheer necessity in an “inaccessible” situation.  It is a hard thing to face that we might not be able to do this forever – and  Im not even sure that I am ready to process that at this point…preferring to keep my focus on what we can do, on helping her reach her best level of physical independence, to minimize the difficulties that may present themselves along the way.   Right now though, it is about dealling with now, and the lessons learned from the current turn of events 😉

Although I can still manage to lift her at times, I need to be more vigelent in circumstances like this when her capacity is further reduced, when she is very fatigued, feeling pain and discomfort, or when her body is reacting a bit more unpredictably with tone, spasticity, or total floppiness as a result of her Cerebral Palsy.

So this week has been yet another learning curve in our journey together.

A combination of factors put me in the position of not being able to “just pick Mikayla up and manoeuvre her around” like I once could without thinking too much about it,  and this has seen us succumb to the need to take another step in our journey and introduce another piece of equipment into our home.   I can’t deny that it has been confronting to face the reality that a hoist has been required and may well be a necessity at other times, but having said that, I cant help but feel lucky that the need for one of these currently remains “occasional”  –  rather than becoming a daily necessity  … and we hope that everything we have done, and continue to do helps to keep it that way for as long as possible 😉

hoist mik

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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

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