Category Archives: Fundraising and Donations for Mikayla

Back in the Saddle

Today was a very exciting day for Mikayla, finally being able to, and having the DSC_3446opportunity to, get back to her beloved horse riding, the chance to be back in the saddle!

Things have changed a bit since she last had the opportunity to ride.  Mikayla has had a number of hospital stays, has finally had her surgery, has undergone months of physical rehabilitation to get to the point that she can weight bare and transfer with assistance, and has grown substantially both in height and weight.   It has certainly has been a full and busy 18mths or so!  What hasn’t changed in that time, is her love of horses and her utter enjoyment of riding,  and all the benefits horse riding continues to provide for her socially and emotionally, as well as physically.

She was recently lucky enough to secure a position at the Riding for the Disabled Centre (RDA) in our area, and has been looking forward to this day with much excitement – the day she could get back up on a horse again.

 

Well today was the big day!!

As it’s been a while, none of her previous horse riding attire still fitted, so she donned the next best thing – A Harry Potter shirt, leggins,  and a horse themed cap – packed her riding bag with the essentials, and headed off full of enthusiasm and eager anticipation.

There would be a number of new challenges to overcome with the changes since her last riding experiences, but from the top of the wheelchair access ramp,  drawn in by the majestic beauty and reassured by the gentle calmness of the patiently awaiting “Cloud” , and gently guided by her coach, Mikayla learned a new way of mounting which enabled  her legs to slowly stretch and adjust into position.  Then, for the first time in a long time, she took the first slow steps with her new riding companion – the large, silky soft, white horse with gentle, sky blue eyes – as they ventured into the  arena together, with Mikayla’s support team by her side.

 

DSC_3450a

What a sight to behold.  Though it took both mental and physical  concentration to maintain her balance and posture, and to find a comfortable position for her legs, she could not hide the ultimate joy in the experience and her determination to persevere were evident, despite being a little tentative and experiencing varying levels of discomfort while she made the necessary adjustments.  Slowly but surely she visibly started to relax back into the rhythm of Cloud’s strong stable steps, and her body and mind started to remember what was required as they moved around the arena.

In the short time of this first meeting, it was wonderful to see relationships starting to be forged – that of rider and horse, and coach, and spotters.  Relationships which will grow over the coming weeks and months as they all get to know one another, develop trust and understanding and build further confidence.  And, having already done well in this first session, there is no doubt that Mikayla will continue to take steps towards achieving her goals of returning to her former level of competence and increasing her level of independence in riding.

And I for one, cant wait to watch this journey unfold!


 

Horse-riding is an excellent activity for Mikayla and the support of donations will help ensure she continues to be able to access this activity weekly, enabling her the best opportunity to fully benefit from it. Apart from the physical benefits of stretching and strengthening muscles and the social and emotional benefits horse riding can provide, Mikayla immensely enjoys it as an activity, and just loves that she has some freedom of movement when on the horse and that a horse can take her places that she couldn’t get to in her wheelchair!

Donations towards Mikayla’s horse riding therapy can be made online via her charity webpage at  www.developingfoundation.org.au/fundraiser/event/team-mikayla  where donations of $2 or more are tax deductible in Australia and where you can also read more about her current fundraising goals.

 

 

 

 

 

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2015 Fundraising Goal – A Sit-to-Stand Wheelchair

It has been a while between posts.  Lets just say there are just not enough hours in a day…..or to be philosophical, perhaps there are enough, and what really needs to be done is done.  I have made several starts on potential blogs topics, all still sitting in my “drafts” arena as I either didn’t get time to follow through or just simply didn’t feel I could adequately express that which I wanted to.

In any case at THIS point in time, the universe has forced the hand of fundraising into the limelight (something else that I haven’t been able to turn much attention too pretty much since my last blog) and so here I am  commencing our fundraising efforts for the coming 12 months.

I will leave the mixed feelings I have about fundraising for a topic on its own, and today concentrate on talking about what we are actually striving for. This year it is providing Mikayla with a Sit- to-Stand Wheelchair. This is a piece of equipment which is a manual wheelchair and standing frame all in one and it will have a lot of advantages for Mikayla moving forward.

Having outgrown both her manual wheelchair and her standing frame, it is timely to look at this option for Mikayla now.  Having the two in one means she can have both with her wherever she is AND she will not only be able to use it to move around but will also be able to stand up while in it, and do that independently!

This is a picture of me trying out a wheelchair that I can also stand up in. Here is what having a ‘sit-to-stand wheelchair’ would mean for me:

I could stretch my legs by myself – this would make a BIG difference especially at school.

I could stand up anytime and anywhere I want, and then sit myself down when my legs got too tired or sore.

  • I could be at eye level with my peers and join in when others stand.
  • I could easily do little bits of standing throughout my day without  needing someone to help me.

It will reduce pressure on my spine.

If I can get it by the time I have my surgery, it will also really help with my rehabilitation because I will be able to incorporate and gradually extend the time I spend standing up. I will be able to do small amounts of standing more often.

Standing up and extending my legs will always be very important for me to do with my kind of cerebral palsy.  How great it would be to have the freedom and independence to do this myself throughout my day.  “  (Mikayla)

 THE PAST YEAR HAS BEEN A TOUGH.

All geared up for her major orthopaedic surgery to occur last year,  Mikayla had 2 attempts that had to be aborted due to complications.  Since then, she has been undergoing a lot of testing.  While she waits to try again, she has continued to work hard, doing lots of low impact therapy and positioning, to keep her muscles in the best shape she can, for when the surgery can finally happen.

As you may remember from previous posts, the surgery Mikayla is waiting for will lengthen the muscles and realign the bones in both of her legs to counteract the damaging impacts that cerebral palsy has placed on her growing body.   She is hoping to regain abilities that she has worked hard to acquire.  Some of her goals include:

  • “ To keep increasing the things I can do independently as I grow up.
  • To get back on my feet and be able to stand up straighter and for longer – even if I do have to hold on to something.
  • To be able to get into and out of my wheelchair by myself or with the help of one person, rather than needing to rely on a hoist.
  • To be able to get back on a horse as soon as possible because I love riding so much and it is also an important and enjoyable physical therapy for me.
  • To get back on my modified bike to be able to enjoy some exercise and the out-of-doors with my family. “       (Mikayla)

Therapy, positioning, and equipment will be ongoing elements in Mikayla’s life, and our family will continue to face challenges in helping Mikayla to reach her highest level of independence into adulthood, while also giving her all the opportunities we can to enjoy her childhood.

There is no Government funding available for her Sit-to-Stand Wheelchair but we are passionate about the difference it will make.

You can help us raise funds towards the purchase of a Sit-to-Stand Wheelchair for Mikayla by DONATING ONLINE using this link www.developingfoundation.org.au/family/mikayla and clicking on ‘Make a Donation’ above Mikayla’s photo. The Developing Foundation Inc is a registered charity and as such, donations of AU$2 and over are  tax deductible for Australian taxation purposes.

We are grateful for the opportunity that The Developing Foundation gives our family to fundraise towards providing Mikayla with specialised therapy and equipment and for the support that she receives. .

A special achievement

Todays riding session was VERY exciting!  mounting There is no doubt that mounting the horse is very difficult at the moment and her legs are only just managing to stretch enough to sit in the saddle, even after a lot of warm up stretching beforehand.  Thankfully, once up, she did manage to settle into the saddle enough to ride.

warming up

I cannot express how much she loves this activity, and how great it is for her, both in terms of its physical benefit but also from a recreational perspective and on a social and emotional level as well!.
Around her birthday Mikayla achieved one of her personal goals – “to  canter”.  While doing a trot, they stepped it up into a canter with 3 of us supporting her – It was super exciting, and a moment I will never forget!!

cantering
Today her grandparents got to see her ride for the first time which was very special.
We are truly grateful to all those who have helped make Mikayla’s dream, a reality!! 🙂
Mikayla will have to have a break from riding shortly due to her surgery, and although we don’t know how long it will be before she can get back in the saddle, there is no doubt that she will be looking forward to the day that she can, and then will set her sights on her next challenge…….hmmmmmm I wonder what it will be?

Anyone wanting to donate to Mikayla’s therapy and equipment costs can do so online from anywhere in the world via her charity webpage http://www.developingfoundation.org.au/family/mikayla  where you can also read more about Mikayla’s story and the things that we are fundraising to be able to provide her.

Mikayla’s Riverwalk 2014

                                           

To view our slideshow of this year’s Riverwalk Event, just click on this link:  Riverwalk 2014   (you will need to open it, then go to “slideshow” and select “from beginning” for it to run, or alternatively you can simply scroll through the slides .

riverwalkLast year, Mikayla determinedly started the 5km Riverwalk, taking a number of steps in her walking device before completing the distance using her modified Trike with the support of her team. This year, with the decline in her legs and with her arm in a cast, Mikayla used her hippocampe, but that didn’t dampen her enthusiasm and she really enjoyed the fun of the day. FUNDS RAISED through on-line donations and sponsorship for Mikayla and her team will help pay for therapy and equipment that she needs after her upcoming orthopaedic surgery to help her get back on her feet and regain abilities and independence that she has worked very hard to acquire throughout her childhood.
Online donations can still be made at www.developingfoundation.org.au/family/mikayla using the “make a donation” button above her picture.
Riverwalk is a wonderful opportunity for Team Mikayla to fundraise towards the many treatment and equipment needs that are not government or charity funded for children with Cerebral Palsy where we live.
We enjoyed participating in the event and sharing a lovely spring morning by the river with our team of supporters

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

2 months post intensive

Really great…….that’s all I can say at the moment about how Mikayla is going.  I can’t tell you how glad I am that we were able to take the opportunity to do the NAPA Intensive Therapy Course (www.napacenter.org) back in May!

It has been hard work trying to keep up the home program, and we haven’t succeeded in keeping up with the full daily program that I had originally hoped might have been realistic.  The hard truth is,  that there are a lot of things in life that are equally important to Mikayla at her age, and in trying to achieve the best balance for her childhood, it simply wasn’t practical or realistic to keep up long term.  We did as much as we could do as long as we could and ALL was not lost as we HAVE managed to keep up a daily warm up routine, and continue to incorporate a range of exercises into everyday activities that Mikayla does.

This is really just a normal part of everyday life for us though, and home programs have been part of everyday life since Mikayla was first diagnosed at 18months old.  They vary a bit over time, depending on what is going on for Mikayla and what our goals are at that point.  They are ever-evolving with Mikayla’s development – both on a physical and intellectual level, and are a result of using current and new information on what is happening with her muscles, bones, and joints and consulting with her team of therapists about a range of activities, positions and exercises that can have a positive impact on her achieving goals at that given point of time as well as have a positive impact on her with regards to future growth and development.

So, as we do at every opportunity, we watch, listen, try our best to understand, and then apply what we know to a range of situations in daily life from doing work on the computer, to watching TV, to dressing and shower time, to doing homework,  getting in and out of the car or house, to play time and the like.  And we have certainly taken exercises and tips that we learned through the intensive therapy course and applied them, incorporating them where possible and practical into everyday activities since doing the course.

So what has changed?  What are we noticing now 2 months after completing the course?  Is it STILL making a difference???

Below are some of the differences that the therapy has helped make to Mikayla:

  • she is raising her hand high above her head in class!
  • she is more stable in her transfers
  • the neatness and size of her handwriting has improved
  • when using a walking frame she is straighter, and more stable on her feet
  • she is able to remain more aligned when sitting for longer
  • she has more endurance for physical tasks and doesn’t seem to be physically tiring as easily or as much
  • she has a straighter posture and is more balanced on a horse and has been able to hold the reins without losing her balance.  She is now starting to steer herself for longer and has been able to maintain body position in a trot for longer before losing her balance
  • As she has better endurance and trunk stability, she is able to steer her manual wheelchair better and propel herself further on flat terrain.  With supervision she has been keen to start experimenting with taking herself down gentle ramp slopes!
  • She is able to speak a bit louder, and say more words per breath partly due to better body alignment and abdominal activation.
  • Increased abdominal strength and activation have also enabled her to do more things like talk or propel her wheelchairs without her legs stiffening out in front of her as much
  • she can catch and throw a beach ball with 2 hands, without losing her balance as often
  • She has progressed to being able to do some of the disassociation exercises without physical assistance, showing improvement in her coordination.

Of course this list is not exhaustive, BUT each one is an example of a practical application of the outcome of the therapy.   Each of these things makes a difference to Mikayla, in what she can do, how long she can do it for and how independently she might be able to do a certain task!

The thing is, that while the therapy course HAS MADE A DIFFERENCE, Mikayla’s need for therapy at this stage is ongoing and a single course of therapy won’t make an ongoing difference indefinitely.  We know that if we do not continue to stretch Mikayla’s muscles regularly, they WILL continue to shorten and this will negatively affect her abilities.  We noticed that when we didn’t do the disassociation exercises for a few days when she was sick, she wasn’t able to pick up where we left off and we needed to give her some physical assistance to get back into the swing of them again, so we can see the need for repetition. We know, that every time Mikayla grows, her muscles do not keep up, and her body does not automatically adjust itself to physical changes or changes in gravity due to getting taller, and that ongoing therapeutic input and other interventions are important in helping her make these adjustments and in maintaining and hopefully continuing to improve her muscle lengths and strength.

We dont know how long it will last, BUT we DO KNOW that intensive therapy HAS made a difference.  It has made a difference for the past few months, and hopefully will continue to make a difference for months to come. The outcomes for Mikayla to date have been so positive, that we would like to give Mikayla the opportunity to do another course of Intensive Therapy in February to continue to build on the gains she has made.  A three week course costs nearly AU$8000 so we are currently fundraising towards this, as well as other therapy and equipment that can help make a difference to Mikayla now and into her future.  To read more about our fundraising efforts or to make a donation go to her webpage at www.developingfoundation.org.au/family/mikayla . The Developing Foundation is a registered charity which guarantees that 90% of funds donated to her via her webpage will go to her particular needs.  To find out more you can contact us at teammikayla@hotmail.com

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.