Monthly Archives: June 2013

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

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 🙂

Post Intensive Post 2

Just to keep it balanced, I thought I would share todays events:

Mikayla was very tired today and didn’t wake up until late this morning (when she doesn’t wake on her own I know she needs the rest, so where possible I let her sleep as long as she needs.  These days I find this happens less than it used to!).

Despite the fact that I was organised and ready, this meant there wasn’t time to do the warm up routine of stretching and dissociation exercises, however, because I am trying to work out a new routine, I decided that school would have to wait this morning so that we could do at least some of them.

There was no walking to class today, and this afternoon, although Mikayla was keen to get into her KidWalk for a little bit, taking steps didn’t come together as well as yesterday.  Now, this could have been for any number of reasons: possibly because she was tired; it was a wet/cold day; the coordination of movements just didn’t kick in today;  she mightn’t have moved round as much during the day at school because it was wet; she may have moved around more or differently (eg crawling in the classroom), she mightn’t be 100%,  there could be so many factors but that is just a few examples. So instead of walking,  she did do some “static standing” at the computer (we have made a height adjustable computer desk with a cut out for her to use) to do part of her homework, then she transferred into her supportive seating to finish the rest.

So every day is different.  Some days you just cant fit stuff in despite your best intentions.  Sometimes despite your best plans or efforts, things just don’t come together for one reason or another even if you can “fit it in”.  And in Mikayla’s case at least, her level of ability can be quite variable, and can easily be affected by a variety of factors that probably wouldn’t impact on others much at all.    For Mikayla, with her CP, the affects of fatigue, tiredness, illness, are far more pronounced and can significantly impact on how well she can do what we might think of as even the most simple of daily living tasks (remembering quite often these tasks are in fact NOT “simple” to her anyway!).

So the important message here is to do what you can when you can and not to be too discouraged on days when it doesn’t work out, because there is bound to be plenty of those 🙂

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.

Day 1 Post Intensive Therapy

So we had the weekend off (sort of), which was much deserved after the past three weeks of intensive effort!  It was nice to catch up with family and chill out.  Catching up on all that has had to be left over the past few weeks has had to wait a little longer in order to allow for some “down time”,  attending to a little more homework, and spending a full day kicking off our fundraising efforts for another bout of intensive therapy in the future!

This morning it is back to reality, and experiencing a little of the post therapy blues that I have heard about from others who have been there before me!   We have been there before after other significant “interventions” and “events”, and indeed it seems to be part of the cycle of emotional highs and lows of this journey we are on.

Today I wanted to share with you a bit about our first attempt at integrating some of our ongoing home program into everyday life!  I had been thinking about this throughout the course, and over the weekend, and I decided first off,  to try and get even more organised in the morning before school and “warm Mikayla up for the day” by replacing my current routine with running through the “warm up routine” we did every morning of the intensive therapy program.

I did this cold turkey today, from memory, and  as it turned out, eventhough I was watching this same warm up routine every day for the past 3 weeks, I still needed some gentle prompting and guidance about “what I wasn’t quite doing correctly” from my amazing little girl (who clearly took it all in)  as I made my first attempt at the sequence on my own.  Together, we made it through her regime of stretching and dissociation exercises, but let me tell you, doing it myself gave me  even greater respect for the work Jess did with Mikayla every morning with a bright and cheerful disposition, hardly ever even working up a sweat.  Although not a seasoned professional like Jess, I think I ended up doing an ok job of it, but with considerably more effort and grunting and groaning on my part!!  Miss Mikayla, with her great sense of humour, found this quite comical so we both ended up having a bit of a laugh about it too, and it seems that I managed not only to warm up Mikayla for her day, but ended up giving myself a good work out in muscles I didn’t even remember that I had, at the same time!!!

Using a wobble cushion while doing some homework

Using a wobble cushion while doing some homework

As the days go on, and as I go over my notes and some of the footage we took, we will continue to look for other opportunities that we can “creatively”  take to “incorporate” helpful things into various aspects of  daily life.  This is after all what we have always done – it is not something new to us.  However, with  Mikayla being of school age, a big portion of time for setting up opportunities is lost with getting ready for and going to school, as well as the additional demands of homework and the physical and mental fatigue that results from this aspect of life.  In this phase,  I often feel the struggle to find the right balance!  I find it is a continuous process of trying things, adjusting, adding something else, trying something new, readjusting the routine, tweaking what you do, falling down and picking yourself back up again, and on the story goes.

Participating in various therapies and courses, interacting with other parents and meeting new therapists, can be great sources of inspiration and provide an extra burst of additional motivation to look at what you are doing and how.  And that is kind of where we are at again with this now.

There are, of course, only so many waking hours, and there is always much to do.  So I think it is important to keep perspective, and keep reminding myself that we are BOTH only human, and we are doing the best that we can to do all that we can do whilst maintaining an over all balance of all the important things in life 🙂

Day 15 Final Day Intensive Therapy

Today is Day 15, the final day of intensive therapy for Mikayla.
This whole 3 weeks has certainly been a bit of an emotional rollercoaster and today is no exception –  I am happy to be seeing some fruits from the labour, sad that we are approaching the end of the therapy, worried about how, when and where we will be able to access more in the future,  glad to be able to spend more time at home again soon,  overwhelmed by the catching up there is to do in other aspects of life now, and thoughtful about how to incorporate new helpful exercises into our daily routine.

Intensive Therapy group photoDuring the course, as at other times throughout our journey,  relationships have been forged and then parted ways, and today was quite sad to say good-bye to everyone.  We will miss the rapport that has built amongst the group – kids, parents, therpists.   However, with social media contacts now exchanged, there have been some new connections made which is nice.  And we can at least continue to share information, stories, journeys.

IMG_4313

Today, I can not help but feel a little disappointed that there isn’t just one more week to go, to allow that extra bit of time for Mikayla practise and further consolidate all the good things that we are seeing.  At the same time however, I can see that Mikayla is physically tired and will be pleased to have a rest from the physical demands on her and also the concentration and focus that is required.

Mikayla’s response to the end of therapy was that there  should definitely be a party for our last day, and helping her organise that has been a welcome distraction in a way!  She has been busy organising what we should wear, who should bring and do what, and subsequently we all donned our PJs or onesies (as this is the current craze apparently), and brought some party food to celebrate the efforts of the past 3 weeks!

IMG_4333

As it turns out, it is possible to wear a suit over your onesie (or your PJs), and indeed to deliver therapy whilst wearing your onesie ….(just in case anyone might be wondering)!   So at the same time as taking down our home programs, taking note of the great work the kids were doing, having a last chat with new friends, asking any last minute questions/advice etc, it was lovely to have that added bit of light hearted fun!

So what were the end results for Mikayla?  Well, for us, it will be a continuing journey of discovery as to how it all comes together, how long it lasts and all the flow on affects.  So stay tuned for that I say!!   From my observations and those of her therapists during the course, Mikayla has made some really good progress in the following areas and has finished the program with :
* improved body awareness, including increased awareness of her centre and self correcting   her body alignment more often
* greater pelvic stability
* greater trunk contol
* looser, lengthened and strengthened muscles in various areas      *better flexibility    *less tone  and *improved trunk rotation during exercises

Some pretty cool things we saw during the therapy included:
* the spontaneous knee walk steps she did, which was pretty awesome!
* putting a hand out to stabilize to the side when she lost balance one time      * pushing up on her arms better in transitions      * more use of a 4 point crawling pattern rather than “bunny hopping”      * visible improvement in her alignment    *longer, freer steps in her walker with less “kneeing in” and less “foot tripping”  * better weight-shifting from side to side  * vastly improved ball handling skills including throwing and catching using 2 hands (which she cant wait to show off at home over the weekend!)

I think that is a pretty impressive list!   (and I might even think of more as I go back through the photos and videos taken to help us at home.)  We have also been told that there could even be further improvement over the coming weeks as she recovers from the physical intensity of the course.

I think it is important to note here, that we weren’t expecting miracles in doing this, nor were we promised any!  We are simply always looking for options that have positive outcomes for Mikayla with the aim of helping her to reach her fullest potential,  be as independent as she can be, and need to rely on as little equipment and modification of her environment as possible into the future.

We went into this therapy program hoping that it would deliver “….strengthening and conditioning, decreasing unwanted reflexes and teaching new improved motor patterns through repetition and correct alignment.” (NAPA Center Website)  We saw the potential benefit in “having the time to thoroughly prepare the patient to exercise”(NAPA Center Website) and wanted to try out the “suit”  and see whether it was a useful tool for Mikayla.  We hoped that participating in this program would help Mikayla gain greater control over her body making some of her daily movement and tasks improved and hopefully easier.  We did not expect that after a single 3 week course, Mikayla would simply get up and walk out of the hall independently!  That is not the nature of Cerebral Palsy nor what we were doing here.  HOWEVER, this intensive therapy course (which was delivered by the NAPA Center by the way)  was a great opportunity for Mikayla, it has given her a real boost, and it has given us another foundation to build on, another string to our bow.

So although we are at the end of this 3 week intensive therapy program, this isn’t the end of the road. The hard work continues from here, in order to maintain her progress, and ideally to further build on it through our home program and incorporating new activities, as well as with the ongoing therapy and interventions she already does.

It is important to understand, that therapy (in one form or another) is an ongoing part of life for Mikayla!  For now at least, there simply isn’t one single answer or one single path to get wherever you are aiming.  There have been a number of therapies, therapy methods, interventions and treatments over the years that have had positive results and contributed to getting Mikayla to where she is today.  Now, we can also add Intensive Therapy and use of “the suit” to the list!….

After a little rest, we will start the challenging task of fundraising once again, so that we will be able to give Mikayla another opportunity to benefit from Intensive Therapy and Suit Therapy in the future (perhaps about 6 months time), to further build on what has been achieved, and to “Make a difference to Mikayla’s life”…..because that is ultimately what it is all about!!

Mikayla's therapists for intensive

Mikayla with her therapists

What were some of the end talleys:
* 48 hrs of therapy
* approx. 28 hrs of travel time (thanks in part to detours and delays caused by some poorly planned and timed roadworks on the only access way to the freeway from our area!!)
* 2777.9 kms of travel to therapy (thanks in part to some very long detours due to roadworks mentioned above!!!)
* approx AU$370 in petrol costs

Anyone wishing to make a donation towards the costs of this specialized therapy for Mikayla can do so online via the blue donate now button under her photo at http://www.developingfoundation.org.au/family/mikayla

 

Day 12 Intensive Therapy – A new achievement

Knee walking earlier in the program. A difficult thing to do!

Knee walking exercises have been part of Mikayla’s program.

This was an EXTREMELY difficult exercise for Mikayla when it was first introduced and she needed a lot of support, prompting and encouragement to be able to do it.

Mikayla’s exercise plan over the past few weeks has included many exercises that crossover and contribute towards helping improve Mikayla’s functional movement.

Some of the areas the knee walking exercise works on include using and strengthening bottom muscles, weightshifting from side to side, trunk strength and stability, AND motor planning and coordination…(Im sure there is more but this is what I have picked up on). If you try it yourself (kneel up tall and then “walk” or shuffle forwards on your knees to get somewhere or grab something ) – you will get the idea.

Day 12 Intensive Therapy Knee walking exercise

Doing Knee walking today – Day 12 Intensive Therapy

As Mikayla practised, I noticed various improvements in how she was able to do this exercise. Slowly, but surely, various things from her exercise plan started to come together, and she started to look like she was getting better at doing this exercise.

Today her movements seemed to come a little easier and be a little freer.  She seemed able to hold her trunk in better alignment as she shifted her weight to one side, while lifting her knee and bringing it forward on the other.  It was still slow, and required a lot of effort and concentration, but today she went twice as far as she had done before with the help of her therapist (pictured above). In itself, this was a big achievement today!

LATER TODAY SOMETHING QUITE REMARKABLE HAPPENED:

Day 12 Intensive Therapy 2 independent knee steps

Mikayla independently getting into an unsupported high kneel. She then took 3 steps forward while on her knees today!

After her break, I put Mikayla down on the mat ready for her last session of the day, and Mikayla spontaneously pushed up into a high kneel (a hard enough thing for her to do on its own), and then in this position, she took three steps forwards on her knees totally on her own!

THIS IS A PRETTY BIG DEAL! ! !

This is something Mikayla has never been able to do before!   It actually took a few seconds for me to process what had just happened!

W-O-W

Unfortunately I didn’t get video of it because it was quite impromptu and unexpected.  But who knows what tomorrow, the next day, next week, or next month will hold!  From experience, we know that just because it all came together for that moment in time today, doesn’t mean it will automatically “happen” from now on,  HOWEVER, what a great thing to be able to see her do!  How especially great that it was spontaneous!  Imagine, if she were able to continue to make improvements that continued to build on this.

BUT FOR THIS MOMENT, and for TODAY – WELL DONE MISS MIKAYLA!

Travel talley:  2172kms and approx. 24hrs driving