Category Archives: progress

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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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

horse riding / therapy

IMG_5001Mikayla has now been doing horseriding for 12 months and what a fantastic activity this has proven to be for her!

Not only is it fun, but it naturally provides the kind of work out Mikayla’s body needs.  Core strength, alignment correction to maintain an upright middle posture, balance, coordination, control, disassociation (working arms independently to legs and one side of the body separately from the other), multitasking (staying on the horse, perhaps steering and maybe even talking all at the same time!) right through to a nice big voice for commands such as “walk on”, “trot” and “woo”!

Mikayla has great instructor who balances well her physical workout  and horsemanship needs and lines it with just enough fun and laughter.  These days as a bonus, I get a free work out too – running along beside her as a spotter!

Mikayla has progressed in few key areas over the past 12 months.  Her endurance has definitely improved with an increased ability to maintain her alignment on the horse in a nice upright posture.  She has been able to do a trot, has improved in her ability to maintain herself while trotting and has even begun trying to do a rising trot !  Although her ability and stability does still fluctuate, there is no doubt that it is doing her good on a number of levels, and it is great to see her making improvements and setting herself (and her instructor) some goals for the future!

Mikaylas own personal goal is to achieve greater independence on the horse, to be able to take control of the reins and steer independently,  and one day she even wants to be able to canter!

Physical benefits and the workout each session is for her aside, horse riding is a fantastic experience for her and I’m sure will be among her fondest childhood memories……..

We are thankful of the kind donations we have received towards helping with the cost of this therapeutic activity for Mikayla.  It is a valuable part of both her therapeutic routine and an activity that she loves and looks forward to!

Those who would like to find out more about the things we are currently fundraising for to help make a difference for Mikayla OR to make a donation can go to http://www.developingfoundation.org.au/family/mikayla

 

One month Post Intensive Therapy

My goodness doesn’t time FLY!

I can hardly believe it has already been one month since we finished Intensive Therapy with Mikayla.

So far it looks like Mikayla continues to reap the rewards of all her hard work, which is just fantastic.  It hasn’t been easy, and it hasnt been every day, but overall I think we have done a fair job at keeping up with the ongoing home program even through the school holidays.  Mikayla has been very accepting (most of the time) of the need to keep up our routine, although she doesn’t really seem to connect the exercises with the direct functional benefits that are evident.   This makes me all the more proud of her, because I know how hard it is to be disciplined about these kind of things, even for adults who do understand the connection!  Just think back to how disciplined many of us have been at following through with a program from a health professional eg an exercise routine from a physio or osteopath, or maybe a training regime for a sport that they love or an event they are going to participate in?  Imagine if you didn’t really understand WHY you were being asked to get up early and do an hour of exercises at the start of your day?  I can certainly think of a few times in my life when I had the best intentions to do these sort of things  AND  just how long some of those good intentions lasted -if indeed some of them even got off the ground at all! And remember, the exercises that Mikayla is doing on a daily basis are not to excel in a sport she loves, or run a marathon in record time, or swim at PB at the next swim meet,  they are to  help her build on her ability to do everyday things and hopefully to be able to do them more independently.  Everyday things like  eating a meal, getting dressed, showering, getting around her classroom, playing with friends….and yet in some ways what she will do in order to achieve her level of independence in things most of us would take for granted,  is probably comparable to the time and effort put in by an elite athlete to keep at the top of their game.

With the home program, we continue with the ongoing process of  modifying, evaluating, adjusting, etc and have sort further advice from Mikayla’s therapists to try to ensure we are really maximising the time we are spending on it.  I can see Mikayla’s abilities in some of them improving and Mikayla is now experimenting and testing herself as well.  When we were doing pelvic lifts yesterday, she wanted me to count and see how long she could hold her bottom up off the ground and then wanted to try to beat her time!  In the disassociation exercises I can feel much less resistance in some of the movements and Mikayla has taken over doing a few of them without any physical assistance from me EG the one where she bends up wrist lifting her fingers and also the one where she alternates hands to shoulders. To me this is pretty impressive, because at the start of the Intensive Therapy Program, Mikayla needed physical assistance to coordinate the movements required in both of these activities.

So I have to say that so far, I am continuing to see great benefits for Mikayla.  It is also encouraging to be hearing positive feedback from others around her too.  Mikayla’s regular therapists have noticed a difference, at school they have noticed that she is stronger and more balanced in her transfers, she is more stable in various positions, she is maintaining a straighter posture for longer, she is generally less fatigued, and her ranges in some key muscle groups have either been maintained or increased.  These are all very positive things, and more importantly, they translate into practical applications such as (but not limited to) those that I have included in the pictures below:-

I can pull myself up on the bar and stand up to look out the window in my cubby

I can pull myself up on the bar and stand up nice and straight to look out the window in my cubby. If Daddy finds some more bars, maybe I can even side step along to the otherside?

IMG_4752

I could sit on the steps for a photo without toppling over – and this was at the end of a big day when I would usually be extra tired and floppy

IMG_4247

Sometimes I can push my dolly along in her pram by walking on my knees. This is very hard to do but I have wanted to be able to push her more independently for a very long time!

The results have been so positive for Mikayla that we have made participation in further Intensive Therapy a focus of our 2013/14  fundraising campaign for Mikayla as it is very expensive to access.  The Developing Foundation (a registered charity) gives our family the opportunity to raise funds to help us pursue our vision and dreams for Mikayla. Donating to Team Mikayla will help make a difference to this beautiful 8yr olds life – helping her to overcome the challenges that cerebral palsy presents her every single day, and giving her every chance to reach her potential, to be as independent as she can be, and to fully experience life.

To learn more about how you can help or to make a donation, go to http://www.developingfoundation.org.au/family/mikayla

Post Intensive Post 3

So today we had another first (of sorts).  This time it involved her manual wheelchair.  Today when I picked her up from school she asked me to remove her armrests because she wanted to propel herself and see how far she could go.  Although it was slow going, and she needed to adjust her steering quite often, she made it all the way to the car.  What impressed me about this was a couple of things: – 1) her own personal drive and determination to do this (especially at the end of the day. 2) her improved trunk strength which is evident at the moment 3) the confidence she displayed by her desire to even try going down the long ramped walkway to the car park independently as long as I was close by to help if she needed it 4) the hand and arm strength demonstrated to control the speed of the chair on the downward slope 5) the problem-solving ability she used in trying a few different hand positions and methods to control her speed and steering on the downward slope and working out the  strategy that seemed to work best for her and that she felt safest with. 6) her determination to see the challenge that she gave herself through to the end and achieve her goal – which she did!

For me, I am glad that I happened to have the time to indulge Mikayla in this impromptu exploration of new-found strength, confidence and skill.  It is not always possible!……. and sometimes the demands of life can be so hectic that opportunities such as this can be lost!  I am thankful that today I was tuned in so to speak, and could afford the additional half hour that it took to get to the car from the classroom.

I was overjoyed at her effort!  Mikayla on the other hand, although she had a smile brimming from ear to ear at making it independently, simply took it in her stride (as she tends to do, downplaying the whole thing and indicating that I am completely over the top).  When I asked her what she thought about it, she simply said, “well it was a lot of effort and I feel a bit tired now!”

Does the fact that she decided to give that a go today, and succeeded,  mean that this will happen from now on?  No. (not at this stage anyway)  Does it mean that she knows she “can” do this, and might apply the skills she tried out in some other circumstance?  Maybe….. Hopefully!

I’m not sure she if she will want to do it again.  That remains to be seen.  But, knowing Mikayla,  I think she will tuck that little achievement away, and might just pull it out somewhere, sometime when I least expect it most probably!

Who knows the next thing she will set her mind to,  what it will be that she wants “to have a go at” ………….  But one thing is for sure, I hope, that whenever and whatever it is, I will be in a position to support her in giving it her best….because who knows what might come of it 🙂

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.