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Treading Water………..or are we?

This post began quite some time ago – just after the second aborted surgery attempt I think.  mikFeeling a bit exhausted after the two lead ups to the surgery and being thrust back into  “maintenance mode” for a second time, I took to writing about the frustrations of “Treading Water”.  You know……..trying to keep your head up above the surface – not going forwards – just trying not to sink!   That is how we were feeling about the battle to maintain the current state of affairs – trying not to go further backwards – trying to maintain muscle length and strength at its current compormised level as much as possible,  holding on until the surgery could happen.   Admittedly, at times, it felt more like swimming against a strong current than just treading water , but anyway,  around 6 months later I finally revisited this post, intending to finish the story of “Treading Water”  that I had started to tell, and I realised that I would now have to tweak that post title!  As you read on, you will see why.

That first attempt at this SMLS (Single Event Multilevel Surgery) was 11 months ago and it has now been more than 6 months since the second attempt. So  the treading water theme really emerged around 2 years ago when the need for surgery was established and we were suddenly shunted from the “moving ahead lane” across to the “slow lane” or “parking lane” so to speak.  Having formed contractures and needing bone corrections, we were now on a different path and rather than therapy regimes designed to make improvements, we were looking for options we hoped could keep things as good as they could be while we waited for the surgery to happen, and give her the best chance of moving forward through the rehabilitation therapy after it.

As it was to turn out, we would be treading water for what had extended into a much longer period of time than anticipated,,,,and at this point is actually close to 2 years!   That’s a long time.

It is especially long when you have CP and are still growing and your muscles are already not keeping up with your bone growth; when you are getting heavier by the day and your muscles are already struggling to hold you; when your body is already having to relearn and adjust to how to do simple things as it changes and grows.  It is a long time not to be using muscles you need to try and keep working to some degree,  and it certainly feels too long not to be moving in the direction you were hoping to go.

Over that time, land based options became increasingly difficult.  Access to helpful equipment was also difficult and facilities enabling water based therapy, few and far between.  While I longingly looked at  some of the wonderful therapy facilities available to kids with CP (and other disabilities) available in the US and Britain, wishing there was “something” like this here, we did our best to follow through with a plan of activities at home and in the water as best we could while we waited, and waited, ………………..and are keeping on waiting!

It is true that it has been hard to keep up a routine for this long, Lets face it, it is much harder keeping to a difficult regime in order to keep from going backwards or stay stationery than it is to do it when you see at least some forward momentum to help spur you on!   Of course plans did fall down from time to time, for one reason or another, and our routine had to change at times to maintain access.   That good old sense of guilt that you should be / could be doing more crept in more often that Id care to admit,   but we are all only human and doing more of one thing usually means something else has to suffer and then there would be guilt over that too.  In the end we were doing our best to find and keep a balance we could live with, within the options that were available, and hopefully, it would be enough in the end without stealing too much of her childhood,  while building on the level of independence and quality of life she has later on.

So as we went about this “maintenance” plan, something unexpected happened……. All the while that we thought we were treading water, desperately trying to hold our ground, it turned out that Mikayla was actually quietly gaining new skills!!

push up barsDuring this period of maintenance,  Mikayla has become really good at lifting her body with her arms using push up handles.  To start with it was difficult to  manage even the motion of “lifting” herself slightly, but with some assistance manoeuvring her legs, and lots of practise, she can not only lift herself, but also move  herself backwards onto her  bed! This has been a hugely helpful skill to build.  She uses it every day (multiple times) to assist with various ADLs (Activities of Daily Living), but if/when the surgery goes ahead it will also help a whole lot while she is unable to weight bare, as well as when she starts her rehab.

long sittingAlthough the contractures combined with her other difficulties make land based therapy quite difficult to do, Mikayla has persevered with trying to get in as much leg extension as possible through things like sitting with her legs stretched out in front, using a stander, assisting with transfers and lying with her legs outstretched.  exerciseShe has also tried to keep using her muscles by assisting in her transfers as much as possible, incorporating as many transfers and position changes as posslible into her days,  and keeping up some of the exercises that are usually incorporated into her everyday routine.

Perhaps the best therapy she has had In the past 6 months though,  by virtue of land based therapy being quite difficult, has been time in the water (warm water around 33degrees)! Unfortunately suitable facilities are few and far between where we are, but the travelling has certainly been worth it as it has turned out.

water exercise aMikayla started off committing to 3 times a week in the water in a combination of hydrotherapy and specialized swimming activities to help keep her exercise in watermoving. That’s right, we just wanted to try and keep her muscles that were difficult to use on land, moving somehow. While the aim was “maintenance”, the results have been nothing short of amazing!.

Without going into all the specifics, her progress has been something like this over the past 6 months or so:

  • To start with she had a lot of difficulty with her standing balance in the water needing to be held or holding on to something to stay upright.
  • The work that she did saw her progress to taking a few steps in the water using a pool noodle for support (and some physical prompting from her therapist) before losing her balance and needing hands on assistance.
  • she then improved further, making it across the width of the pool stepping with her noodle in an ad-hoc kind of zig zaggy fashion.  I was feeling pretty excited for her at this point but then…..
  • she improved further, and took steps in the water without even using a noodle to assist – not just a few steps either like more than 10 steps at a time!
  • then, she went on to walk across the pool without using assistance.  Though it was  in a kind of  unintentional manner and in more of a diagonal direction, she was managing to  maintain her balance enough not to need hands on assistance (just close supervision) ……but wait folks there is more –
  • SHE THEN walked quite intentionally from one side to the other, right across the pool.  THIS WAS REALLY QUITE AMAZING!!

I guess I should clarify that she isnt walking round the pool like someone without the affects of her CP.  She still loses her balance, her direction, its not all automatic, and its not easy – BUT she HAS done it……..CAN do it – at least for now, when she is concentrating and before she is too fatigued – and ladies and gentlemen, that is a big deal! .  This really is quite significant accomplishment for her.

walking with a noodle

Learning to walk in water with a pool noodle

taking steps without a noodle

taking steps without assistance

catch and throw

playing catch and throw while STANDING in the water

 

 

 

 

Here is a child who cannot stand on land independently without support, and even then not for very long at the moment,   who couldn’t even stay upright in the water without holding onto something a matter of months ago and now here she is independently stepping  herself around in the pool, happily able to amuse herself, even chase and throw a ball, without hands on assistance from an adult, and without using any ‘device’ .  Seriously – I am still pinching myself!

Granted, Mikayla certainly still needs constant and close supervision in the water, and hands on assistance is still necessary at times BUT the IMPORTANT thing is that what she is now able to do in the water gives her a real sense of freedom within the pool…and a much greater level of independence, … and how great is that for her!

The other cool thing, is that there have been other flow on affects from this, such as an improvement in her endurance levels for physical activity, and some improvement in her upper body strength and co-ordination – just to add some icing to the cake,  And when in the water she is spending much more of her time in extended positions (muscles and limbs stretching out)rather than being flexed (muscles and limbs bent up).

Funnily enough “being more independent in the water” or “being able to get across the pool independently (even using a device) was never the original goal – sure we have always hoped to help Mikayla achieve as much independence in the water as possible.  She loves the water!!    But at this point, the main focus was just to keep her muscles moving and hopefully improve her fitness and stamina through some form of physical exercise – it was a way of treading water – while waited to find out if her surgery could be attempted again –  but hey,  you wont find ME or Mikayla complaining!

So as heartbreaking as her land based struggles can be sometimes, and as worrying as what the future holds for her mobility,  it has been a wonderful thing to see her water based independence increase!  Lets hope that can be maintained now also 🙂

So there you go.  Here we were thinking we were ‘just’ treading water all these months, when in fact Mikayla ended up gaining new skills and a new level of independence in the pool.

What this means for her surgery we will still have to wait and see but regardless of that, it has been a very positive thing for Mikayla.

So what is the moral of this story?  Hmmm, well, I wasn’t really clever enough to have one in mind.  Perhaps I will leave it to the reader to decide (if any actually make it to the end of what has turned into a fairly long post!)

I guess one thing might be that had land based options been more feasible, we probably wouldn’t have gone the extra mile to make more water time happen right now because of the logistics involved due to a lack of suitable and available facilities.  So maybe it is the old “every cloud has a silver lining”?, or perhaps another angle could be that you may not end up where you think you are headed but it might be a nice place all the same?  OR perhaps just simply to sing the praises of water??  What do you think? 🙂

And readers, Im excited to say that Mikayla’s achievements in the pool don’t stop there – in the time it has taken to finish this post, there have been further developments……..stay tuned – hopefully I will get to posting about  that, one day soon!

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2015 Fundraising Goal – A Sit-to-Stand Wheelchair

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

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

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

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

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

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

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

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

It will reduce pressure on my spine.

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

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

 THE PAST YEAR HAS BEEN A TOUGH.

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

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

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

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

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

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

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

2 weeks post NAPA Round 2

Well Mikayla did great with the therapy, and after saying our goodbyes to the therapists and some new friends, we headed home with renewed focus and enthusiasm, and armed with some new ideas and exercises, and I might add, with Miss Mikayla in great shape!!! There is no doubt that having trained and experienced professionals work with Mikayla in a targeted, consistent, and intensive fashion for three weeks has had a number of benefits for Mikayla. If only therapeutic input of this kind was more available and affordable to children and families here, especially during their growth and development years. Thank goodness for those who contributed to our fundraising efforts to help towards the costs so that Mikayla could be given the opportunity to benefit! And there is no doubt in my mind that she has benefitted. Now it is back over to us, to continue to practise, and incorporate as much “therapy activity” into every day life…..continuing to strive towards achieving the right overall balance, negotiating the fine line between living in the now and providing the best physical foundations that we can for her current and future levels of independence.

You can make a difference by donating towards the costs of future intensive therapy for Mikayla, online by visiting her webpage at the registered charity The Developing Foundation Inc, by following the link http://www.developingfoundation.org.au/family/mikayla or by emailing us at teammikayla@hotmail.com for other ways that you can make a donation including cheque or direct deposit into her charity bank account.

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

Where is the road map???

One of the difficult things that I have found about Cerebral Palsy is that there really isn’t much of a road map! I can remember in the early years of Mikayla’s diagnosis, searching for answers, desperately looking for some idea about what we could aim for, what it would mean for Mikayla’s future, what would it “look like” down the track???? Sure there was some very general information on Cerebral Palsy out there, but what I discovered is that outcomes ARE extremely difficult to predict for an individual. I can remember asking our therapists questions that they really couldn’t answer in the early days and feeling totally dismayed that I couldn’t seem to get a good solid straight answer….but now, I have much more understanding of why this is, and a much better understanding of the number of factors that can potentially influence the outcomes for an individual with Cerebral Palsy.
As a parent it is very difficult to know where to aim if there aren’t any goal posts, and indeed even if there are some, yet they keep shifting. As we continued along the journey, there were a few “indicators” given here and there which helped a bit.
We are still at a point of unknowns today, and still learning all the time about Mikaylas CP and how it affects her.
And I guess, there are two sides to every coin, and perhaps the flip side is that without a road map, there can be some freedom to pave your own path…..