Category Archives: therapy at home

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?

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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

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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

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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 🙂