Tag Archives: cerebral palsy

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!

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. .

A bump in the road – another step taken

Mikayla has been quite unwell recently and may take a bit of time to recover as she doesn’t bounce back as easily as her peers.  Her illness has really knocked her for a 6, and she has been unable to assist with her transfers much at all.  Not knowing how long this would last or how much worse it might get,  I was just getting on with things (as us mums do)………until I  unfortunately hurt my back in the process 😦   Don’t worry,  its nothing permanent or serious enough to render me incapable of getting on with most things with some adjustments to my posture and methodology, and hopefully some hot packs and rest will sort it out soon enough. However, it does, unfortunately, greatly affect my ability to lift and bend in attending to Mikayla’s needs at the moment, and as a result, has forced me to face up to the significant impact that an injury which affects my ability to assist Mikayla has.   Although I have been conscious of this for a long time, our current situation, has forced me to think even more carefully about how I do things and has suddenly brought the issue up higher on the agenda and meant confronting the reality of my baby’s size (length) and weight.

The fact is, my 1lb4oz baby, my little girl, is growing at a rate of knots and is now a big girl 😉 getting closer to adult size every day.

    6   rocks   riverwalk

However much I want to avoid thinking about it, I simply must be more mindful that the risk of injury has increased – particularly at times like this when she is not able to help as much or as often.

In working towards helping Mikayla gain physical skills and capabilities that contriubute to her overall level of physical independence, we encourage and assist her to do as much as possible of a given task independently (time, resources, and priorities permitting).  The level of assistance she usually needs varies according to the task at hand combined with a number of other factors, and can fluctuate.   Full assistance can be required at times but lifting is generally reserved for when she is very tired or ill,  where it is necessary in order to give her a fun experience, or out of sheer necessity in an “inaccessible” situation.  It is a hard thing to face that we might not be able to do this forever – and  Im not even sure that I am ready to process that at this point…preferring to keep my focus on what we can do, on helping her reach her best level of physical independence, to minimize the difficulties that may present themselves along the way.   Right now though, it is about dealling with now, and the lessons learned from the current turn of events 😉

Although I can still manage to lift her at times, I need to be more vigelent in circumstances like this when her capacity is further reduced, when she is very fatigued, feeling pain and discomfort, or when her body is reacting a bit more unpredictably with tone, spasticity, or total floppiness as a result of her Cerebral Palsy.

So this week has been yet another learning curve in our journey together.

A combination of factors put me in the position of not being able to “just pick Mikayla up and manoeuvre her around” like I once could without thinking too much about it,  and this has seen us succumb to the need to take another step in our journey and introduce another piece of equipment into our home.   I can’t deny that it has been confronting to face the reality that a hoist has been required and may well be a necessity at other times, but having said that, I cant help but feel lucky that the need for one of these currently remains “occasional”  –  rather than becoming a daily necessity  … and we hope that everything we have done, and continue to do helps to keep it that way for as long as possible 😉

hoist mik

A special achievement

Todays riding session was VERY exciting!  mounting There is no doubt that mounting the horse is very difficult at the moment and her legs are only just managing to stretch enough to sit in the saddle, even after a lot of warm up stretching beforehand.  Thankfully, once up, she did manage to settle into the saddle enough to ride.

warming up

I cannot express how much she loves this activity, and how great it is for her, both in terms of its physical benefit but also from a recreational perspective and on a social and emotional level as well!.
Around her birthday Mikayla achieved one of her personal goals – “to  canter”.  While doing a trot, they stepped it up into a canter with 3 of us supporting her – It was super exciting, and a moment I will never forget!!

cantering
Today her grandparents got to see her ride for the first time which was very special.
We are truly grateful to all those who have helped make Mikayla’s dream, a reality!! 🙂
Mikayla will have to have a break from riding shortly due to her surgery, and although we don’t know how long it will be before she can get back in the saddle, there is no doubt that she will be looking forward to the day that she can, and then will set her sights on her next challenge…….hmmmmmm I wonder what it will be?

Anyone wanting to donate to Mikayla’s therapy and equipment costs can do so online from anywhere in the world via her charity webpage http://www.developingfoundation.org.au/family/mikayla  where you can also read more about Mikayla’s story and the things that we are fundraising to be able to provide her.

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