Tag Archives: donations

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. .

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

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  

Growth – friend and foe

IT is lovely to watch your children grow and blossom though the stages of childhood. All of us with little ones would be familiar with the phrase “My how they’ve grown” so often uttered by those who havent seen them recently or who don’t see them often! The joys that come with “growing up” and being able to do more things, as well as the benefits which come with deeper insights and a greater level of understanding of things in a broader context.

Mikayla experienced significant physical growth throughout last year.
Unfortunately, for kids with CP there is a “foe” in this growth as well. With growth comes increased weight and height which not only means that little bodies need to constantly relearn how to operate under additional forces, but also weaker muscles are exposed under the strain of greater gravitational forces and the strain of supporting heavier weight. Also, muscles affected by spasticity simply dont stretch enough to keep up with bone growth which means they also end up being shorter than they should be. In Mikayla’s case, her knee joints cannot acheive their full range of movement anymore and this called a contracture. Contracture is a term we had heard before – it was something that we needed to avoid, and stretching, strengthening, positioning etc have all partly aimed towards the goal of “not getting a contracture”! Although we have been lucky I guess to succeed in “putting them off” up to this point, to find out she now has contractures still feels somewhat like we have failed her in some way, (even though, we are told that it was more than likely inevitable that she would get some sort of contracture(s) of some degree at some point).

Anyway, despite our best efforts Mikayla’s muscle growth has not kept up with her bone growth and this has resulted in “contactures” in both her knees and probably her hip flexors too and at our last appointment with her orthopaedic specialist we were told that she was going to need soft tissue surgery. The plus side of that is we have still managed to avoid bony surgery (ie hip surgery) to this point at least, and the longer that can be put off too, the better I am told.
But still…..surgery???? THAT was not on our radar at this point! We have been monitoring her hips very closely under the hospitals hip surveillance program and have been hopeful that we would manage to avoid hip surgery….which we have so far. We knew that we were doing well if we could get to around 8yrs old without having any surgery, and with Mikayla having turned 9 we thought we had pretty much dodged the surgery bullet….. so the mention of surgery quite honestly came as a bit of a shock.

In any case here we are at 9.5yrs old looking at some quite significant surgical intervention to lengthen her hamstrings and probably a number of other muscles as a result.
With one appointment, our whole situation feels like it has changed so quickly! It feels like we have gone from making gains, achieving results, working towards new skills and abilities, with a team of people we know and feel comfortable with to suddenly now being shunted across to a different area to deal with surgery and rehab! IT feels a bit like we have been dropped back into the unknown which is sort of funny because we have always remained somewhat in the “unknown” – the thing is that we became sort of familiar with the bit of the undkown we were in, and now its like we have been landed in a “different bit of the unknown” and are starting the process of gathering information, getting to know new people and the lay of the land there, and basically trying to get a handle on this new situation (which is part and parcel of the old situation) – sound confusing – IT IS! Sound a little daunting – YEP IT IS THAT TOO!

Anyway, having been travelling this journey for more than 9yrs now, we have learned a few things along the way that might help us as work though this next chapter.
1) We are more experienced at negotiating the unknown, we have more contacts within it, and we have the benefit of broader technology and social media forums to help us find our way, and hopefully to find what we need to know to make the best decisions for Mikayla’s future as we can.

2) Feeling left to the “system” (a system that often seems to break down somewhere along the line) to contact you with your next appointment SUX. So another thing we have learned is “not to wait and assume that THE SYSTEM will take care of things”. Having learned this lesson, we did not leave it long in the lap of the gods, and have been proactive in contacting the hospital department and trying to find “someone” who can be some sort of point of contact. We have done some digging around to ensure we were on the relevant waiting lists, and are getting prepared with the relevant referals etc to get a second opinion, and the opportunity to ask further questions about the options should it become necessary.

3) In the meantime, I am researching (again) and getting on with now. Ploughing though the internet to try and find the information I need to be as informed as I can about ALL the options and anything else that might help at this point from dietary considerations, to alternative therapies, to treatment and maintenance/control of the contractures that have already developed, all the while trying to ensure we are continuing with all the things we do to try and avoid any further contractures from occurring………and balance all that with everything else that comes with family life.

Although we have a very brief and basic outline of what will be involved in the process, and the sort of testing that will now be done prior to surgery so that they can determine the best course of action and timing, I have to tell you I have far more questions than answers at this point. I am finding it hard to get my head around, hard to plan for the unknown, and hard to be left without knowing exactly when and where the next solid next step is.

So as we rejoice at the gains that have been made over time, and are thankful for everything that has been done in order that Mikayla is where she is now, we continue to struggle against the growth that has come and inevitably is yet to come, in order to “maintain”. Maintain the contractures where they are at the moment and try not to let them get worse. Maintain the skills Mikayla has worked so hard to achieve, that she has learned and had to relearn with each change to her body through both growth and various intervention. Maintain her ranges in other muscles and try to prevent further contractures from forming. Maintain our vigilance in striving for the best for her and making sure she isn’t lost in the “system”.

Maintain the best balance we can in life as we work through this new phase in the journey and continue to adapt to seemingly ever-changing circumstances.

Mikayla only receives 5 partly Medicare funded physio appointments in a calendar year! All other therapy is done at our own cost. Anyone wanting to donate towards the costs of Mikayla’s regular therapy requirements or her intensive therapy programs can do so on line at her charity website at http://www.developingfoundation.org.au/family/mikayla or can email us at teammikayla@hotmail.com for other methods.

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

Fundraising for Mikayla’s needs

i-am-mikayla.jpgWe have linked in with a great charity called “The Developing Foundation” who supports families like ours to raise funds towards achieving their vision for kids with additional needs like Mikayla. Although the decision to help Mikayla in every way we can is easy, putting yourself out there enlisting help is not, and anyone who know us, would know that taking this step has not been an easy decision. We are hoping that the benefits for Mikayla however are BOUNDLESS, and that with the help of supporters, we can really help her achieve all that she is capable of, and keep her life as barrier free as possible.

The Developing Foundation gives our family the opportunity to raise funds to help us continue to provide Mikayla with opportunities to further develop her abilities, increase her independence, and find ways of participating in activities that she loves. The donations Mikayla receives will help us continue to work towards overcoming the challenges that cerebral palsy presents Mikayla every day, and give her every chance to “become all she can be and fully experience life”!

To help Mikayla achieve her goals and make a difference to her future, you can:

• Donate online by clicking the blue ‘DONATE NOW’ button under Mikayla’s photo at www.developingfoundation.org.au/family/mikayla and receive an automatic tax deductible receipt for donations $2 and over
• Share this information with your family, friends, colleagues, and anyone else you can think of to help us increase awareness of The Developing Foundation and our fundraising efforts to help Mikayla.
• Help us raise sponsorship for our team through participation at the Annual Brisbane Riverwalk event by collecting donations on our behalf using pre-printed receipts supplied by The Developing Foundation Inc.
• All donations of $2 or more are tax deductible. The Developing Foundation commits 90% of funds raised by or donated to our team, to these unmet needs. The remaining 10% is used by the charity to cover credit card charges, administration and support.
If you have a question for our team please email teammikayla@hotmail.com

Thank you for your support, it means a lot to us, and will help make a difference to Mikayla both now and to her future.
teammikayla_lores.jpg

YOU CAN BECOME ONE OF MIKAYLA’S ANGELS NOW BY MAKING A DONATION.

Go to www.developingfoundation.org.au/family/mikayla or contact us at teammikayla@hotmail.com for more information.

Mikayla and family