Tag Archives: equipment needs

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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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

Mikayla’s Story

Life has been a challenge right from the start. I was born nearly 13 weeks early and weighed just 576grams (1lb4oz)! I was so small that my Dad’s wedding ring slipped easily onto my tiny arm like a bracelet! Due to my prematurity and very low birth weight, it was a very difficult time for my family and there were many things to overcome during the months I had to be in the hospital.

Today, I’m pretty much like other kids my age. I like to play, read, listen to music, do arts and crafts and enjoy the out of doors, and spend time with my friends. I really love animals, especially horses and dogs, and one day I would love to live on a farm and have lots of animals of my own!

Cerebral Palsy affects my balance, strength, and coordination. It makes many daily things difficult for me to do, and it means I need help with a lot of things…but it doesn’t stop me!

To help my muscles, bones, and joints, I need ongoing therapy, and lots of different equipment. As I grow and change, equipment often needs to be resized, modified or replaced, and I sure have grown a lot!
In May, I have the opportunity to do an intensive therapy course right here in Australia! Intensive treatment like this can help a lot, and is not readily available here. I will work on my movement patterns, stretching and strengthening, and improving my balance. It is very expensive to do, but it is a great opportunity.
As well as the Intensive therapy course, other things that Mikayla’s Team is raising funds for include my regular ongoing unfunded therapy and my equipment needs. This year this includes:-
• Gap funding for a bigger power wheelchair (I have outgrown my current one)
• New hi/lo supportive seating for use at home (I have outgrown my current one)
• A Kidwalk hands free standing and walking device (This will really help with my muscles and will allow me to do activities I love while helping my body)
• Regular Physiotherapy, Speech Therapy, and Occupational Therapy
• Therapeutic horse riding and other therapeutic interventions. (This is a great activity to activate and strengthen many of my muscles and riding horses is also really great fun!)
• A 24” modified tricycle (I have outgrown my current one)
• Home modifications for wheelchair access.
Each of these things will make an important difference to my life, and to my ability to do things I need to do, and those things I really enjoy.
With a lot of effort and determination, I continue to overcome many challenges. With your support and the continued love and help of those around me, I want to reach my potential, to be as independent as I can be, and to fully experience life!