Category Archives: therapy

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!

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.

Week 2 Round 2 NAPA

This week I really started to understand some more aspects of Mikayla’s physiology (I think that is the right term) better….I think…… That sounds silly in one way, but along the way and at different times, certain things just seem to click in practical terms. There is always a lot of information for me to watch and listen for during therapy sessions and I have learned a lot from various different professionals. It is important to take in what you can because therapy is as much about teaching me what I can do to help as it is to delivering hands on therapy to Mikayla. After all, when the therapist leaves, it is up to me to apply techniques and knowledge learned on a daily basis.

Here is some of what happened in Week 2 of the NAPA intensive therapy sessions

crawl

Have you ever noticed how much trunk rotation is required for crawling? Do you know how difficult it is to do with your elbows bent? You also need to be able to disasociate both your legs in a 1, 2, 1, 2 motion and coordinate your leg movements with your arm movements. Do you know how hard it is to balance when your arms and hands are actually back behind your shoulder position.Tight hip flexors do not allow you to extend your leg back either. You also have to shift your weight from side to side to lift your knees, and hold your head up!

arm exercises

Holding your arms out in front of you takes a lot more effort and coordination that one might think. You need to engage your core, your shoulder girdle, hold your head up, activate your bottom muscles and stabilise by pushing through your feet. Mikaylas body doesn’t automatically coordinate all those things to make what might seem like a relatively simple action, happen. You can see the effort and concentration on her face as she tries very hard.

knee walking

Last time Mikayla came a long way with knee walking. This time it is even harder because her tight hip flexor muscles and hamstrings meant that she cant get into a nice straight alignment and she is being pulled forward as you can see with her bottom sticking out and her trunk angled forwards. This is still a great exercise for Mikayla as it involves weight shifting, disassociation of her legs, and the use of many muscles required for standing, walking and crawling.

trunk rotation

Practising the movement pattern required to go from lying down to sitting up. Again many muscles, lots of strength, motor planning and coordination are required. This is a good one for working her obliques and trunk rotation which is something that doesn’t come naturally or easily to her.

kidwalk

Weight baring is a really important thing for Mikayla to continue to do (and to continue to be able to do). The kidwalk assists Mikayla to stand with her hands free. She is still learning to propel it and to steer it. It is a useful tool to help her continue weight bare and to give her opportunities to stretch out her muscles and not be in a sitting position where muscles contract.

these are hard

Those cobra poses are really difficult for Mikayla – especially not being able to lock her elbows into a “relax position” and so she is doing them with her elbows always bent. These are helping to strengthen her shoulder girdle and are also good for stretching the hips.

You are a “therapy all star”, as your shirt says Miss Mikayla!  You are doing a great job and we are so proud of the effort you are putting in!

Access to ongoing therapy and Intensive therapy is very important for Mikayla to continue to develop and to maintain abilities that she has worked hard to achieve.  The annual costs are significant with a single paediatric physio session costing between $150-$200 per hour and intensive therapy courses such as this costing upwards of $8000.  As well as her regular therapies, Mikayla would benefit greatly from doing 2 intensive therapy courses per year.  Anyone wanting to help towards the costs of therapy that can make a difference to Mikayla’s life now and to her future can do so by donating via her charity webpage at http://www.developingfoundation.org.au/family/mikayla by clicking on the blue “Donate Now” button that appears under her photo

End of Week 1 Round 2 NAPA

Well here we are at the end of week 1 having finished the first 5 days of Intensive Therapy with NAPA Center’s team that has travelled out from LA. It has certainly been very encouraging to see that Mikayla has already shown improvement at this early stage! Despite the hot and humid weather we have all endured this week, she has taken it all in her stride, and worked very hard both at her therapy and at keeping up with her school work!

There is no doubt that the daily stretching Mikayla is receiving, is having a positive effect, and though it can be a little uncomfortable for her, she is tolerating it well so far.

P2180012 P2200069P2200064

Stretching is not only an important part of preparing Mikayla’s body for the workout to follow, but is in fact, an important part of our daily home routine of preparing Mikayla for simple everyday activities. Effective stretching takes time and patience and sometimes even two people.

Mikayla is already managing some activities that she had to work up to last time, so that is a good sign.   Hopefully we will see improvements in her ability and endurance for these tasks in the weeks to come, but starting here this time is very encouraging and was somewhat unexpected given the decline in many functions that we have noticed in recent months.

Mikayla’s core strength and shoulder girdle have been a big focus again this time.  The great thing is that with concernted effort, we are seeing her activate these muscles more quickly than before.   I guess this is the effect of “muscle memory”? So this is quite exciting!

P2190051

Knee walking remains very challenging and she is having more trouble getting her self straight and keeping her balance when weight shifting

 

There have been some new exercises added to her repertoire. These may become further extentions of her home exercise program, and will be of benefit to her moving forward.

new exercise

strengthening arm and core muscles and practising to maintain balance in sitting (now THAT is multitasking!)

P2190091

working arms, wrists, and shoulder girdle (started like this)

shoulder girdle - got it

“You got it Mikayla!” (finished like this!….Amazing )

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Even with effort and assistance, this is about as straight as Mikayla could get during her standing

Working to combat the impacts of growth on her lower limbs is centred mainly around strengthening areas of weakness in her legs.  Not being able to straighten your knees (due to contractures) certainly makes standing all the more difficult.  If you want to, you can try it yourself to get an idea of the experience  – just stand with your knees bent and maintain it for a count you are comfortable with, and notice the muscles that start to work.  If you couple this with tight hip flexors pulling you forward and down (so you could bend slightly forward at the hips if you want to get an idea of what happens to you for yourself) and then imagine you also have weak bottom muscles –  already it is not an easy task  – even for people whose muscles work well together, are coordinated and who do not have difficulties with balance!  Now imagine you also have spasticity (stiffening muscles), a lack of muscle coordination(muscles working against each other rather than with each other), sensory deficiencies, weakness through your tummy/core, and a wobbly pelvis…….?????

So there is no doubt that week 1 has been hard work!  And Miss Mikayla is looking forward to, and deserving of,  a break over the weekend.

taking a break

taking a break

The good thing is that through it all there have been smiles and fun and already some new achievements!

P2200092P2190048

 
We look forward to week 2 with some renewed hope of moving forward rather than hoping to slow down a bit of a backwards trend, and so that in itself is a good thing!

Day 1 Round 2 NAPA Intensive Therapy

It is 9 months since Mikayla started her first session with NAPA, and we are fortunate to have secured a place in this round here in Australia: – round 2 for Mikayla.
Mikayla has been looking forward to working with the NAPA therapists again, as well as catching up with some of the families that she got to know last time.
SO here we are, it is all systems go, and straight to work!
105

112

121

Mikayla took it all in her stride.

I could see a lot of changes in what she could do following the last session, and what she could do right now.  A lot of these have probably resulted from growth (see more in my post growth – friend and foe which I will endeavour to get out by the weekend) . I cant help thinking to myself how glad I am that we did the last course as it certainly put her in a better position to adjust to this growth!”.  On the flip side, I wonder what things would be like if we hadn’t.  I guess, like with many things, we will never know for sure.

It seems that the team will be working on similar things this time: Strengthening glutes, quads, hamstrings and obliques; stretching tight muscles (psoas and hamstrings); trying to regain some more pelvic stability and improve core strength; working on transfer and transition patterns; strengthening arms and working on her shoulder girdle……..

I wonder how things will pan out this time.  I also wonder how quickly  muscle memory will kick in, and what she will achieve this time.  Will the contractures get in the way of progress?  Can she work against the growth and increased weight she has experienced? Will the benefits be the same or different? Is it a case of one step forward 2 steps back then one step forward 1 step  back, followed by one step forward and no steps back?  Could it even be one step forward, then another, and another?  I wonder…..

Whatever happens, I hope it helps make something a little easier, a little less effort and a little more fun……..because at the end of the day, THAT’S what MAKES A DIFFERENCE to Mikayla 🙂

So stay tuned, and we will all find out as time unfolds………

 

A marathon effort

On the weekend our family participated in The Developing Foundation’s 30th Annual Riverwalk Event in which families like ours can seek sponsorship for completing a 5km course to fundraise for unfunded and unmet needs.

Riverwalk 2013, was the 30th anniversary of the event. It was a beautiful spring day and we all enjoyed sharing it with family, friends, and supporters.

Although a 5km run might be a marathon for some, every step takes a marathon effort for Mikayla, and this year she was determined to have a go at starting off the course, walking. Mikayla managed to take an amazing 300 steps in her walking device, covering approximately 70metres, before changing over into her modified trike and finishing the rest of the 5km event, with the support of her team! What a massive achievement for a little person for whom simply standing up is challenge!

Mikayla, born 13 weeks prematurely, is no stranger to a challenge, facing them daily as a result of having Spastic Cerebral Palsy. We are so proud of her desire to have a go, and for the effort she puts into things she does. She takes so much in her stride, and her determined and fun-loving spirit is an inspiration to us!

Fundraising has been a necessity over the past few years where time is of the essence, and the specialized therapy and equipment that it has helped pay for, has made an enormous difference to Mikayla and to our family as a whole.

The wheelchair accessible vehicle has given Mikayla the freedom to get out and about in the community in her power wheelchair, and enables us to transport equipment such as her modified trike, walking devices, and hippocampe, making it possible to share in family activities such as bike riding, bushwalking, the beach and camping, together. Not only does such equipment contribute to her ability to do more things more independently which is important, but there are important physical and emotional benefits as well.

The cost of Mikayla’s ongoing therapy needs is largely unfunded, and has been for some time, yet it is still so important for her continued development and to help her body adjust to changes as she continues to grow. Fundraising via Riverwalk and other events we have done, also contributed to the costs of doing the NAPA Intensive Therapy Course earlier this year, the results of which were so impressive, that we are now fundraising toward the more than AU$8000 it will cost for her to do a further course in the new year.

We are very thankful to those who have been able to help make a difference to Mikayla, and to those who offer support in any of its many forms as we strive for the best outcomes for Mikayla as she continues to live with the everyday challenges that her cerebral palsy presents her. We are also like thankful for the opportunity that The Developing Foundation Inc gives our family, and others, to fundraise. Without the ability to fundraise, I am saddened to think of all the things Mikayla would be missing out on, from the physical gains she has made to the experiences she has been able to have, and will be able to have in the future.

Donations towards making a difference to Mikayla are still able to be made on line via her webpage at http://www.developingfoundation.org.au/family/mikayla or we can be contacted via teammikayla@hotmail.com
Attached below are a few photos of Riverwalk 2013.

starting off taking steps

starting off taking steps

changing over onto modified trike

changing over onto modified trike

2 months post intensive

Really great…….that’s all I can say at the moment about how Mikayla is going.  I can’t tell you how glad I am that we were able to take the opportunity to do the NAPA Intensive Therapy Course (www.napacenter.org) back in May!

It has been hard work trying to keep up the home program, and we haven’t succeeded in keeping up with the full daily program that I had originally hoped might have been realistic.  The hard truth is,  that there are a lot of things in life that are equally important to Mikayla at her age, and in trying to achieve the best balance for her childhood, it simply wasn’t practical or realistic to keep up long term.  We did as much as we could do as long as we could and ALL was not lost as we HAVE managed to keep up a daily warm up routine, and continue to incorporate a range of exercises into everyday activities that Mikayla does.

This is really just a normal part of everyday life for us though, and home programs have been part of everyday life since Mikayla was first diagnosed at 18months old.  They vary a bit over time, depending on what is going on for Mikayla and what our goals are at that point.  They are ever-evolving with Mikayla’s development – both on a physical and intellectual level, and are a result of using current and new information on what is happening with her muscles, bones, and joints and consulting with her team of therapists about a range of activities, positions and exercises that can have a positive impact on her achieving goals at that given point of time as well as have a positive impact on her with regards to future growth and development.

So, as we do at every opportunity, we watch, listen, try our best to understand, and then apply what we know to a range of situations in daily life from doing work on the computer, to watching TV, to dressing and shower time, to doing homework,  getting in and out of the car or house, to play time and the like.  And we have certainly taken exercises and tips that we learned through the intensive therapy course and applied them, incorporating them where possible and practical into everyday activities since doing the course.

So what has changed?  What are we noticing now 2 months after completing the course?  Is it STILL making a difference???

Below are some of the differences that the therapy has helped make to Mikayla:

  • she is raising her hand high above her head in class!
  • she is more stable in her transfers
  • the neatness and size of her handwriting has improved
  • when using a walking frame she is straighter, and more stable on her feet
  • she is able to remain more aligned when sitting for longer
  • she has more endurance for physical tasks and doesn’t seem to be physically tiring as easily or as much
  • she has a straighter posture and is more balanced on a horse and has been able to hold the reins without losing her balance.  She is now starting to steer herself for longer and has been able to maintain body position in a trot for longer before losing her balance
  • As she has better endurance and trunk stability, she is able to steer her manual wheelchair better and propel herself further on flat terrain.  With supervision she has been keen to start experimenting with taking herself down gentle ramp slopes!
  • She is able to speak a bit louder, and say more words per breath partly due to better body alignment and abdominal activation.
  • Increased abdominal strength and activation have also enabled her to do more things like talk or propel her wheelchairs without her legs stiffening out in front of her as much
  • she can catch and throw a beach ball with 2 hands, without losing her balance as often
  • She has progressed to being able to do some of the disassociation exercises without physical assistance, showing improvement in her coordination.

Of course this list is not exhaustive, BUT each one is an example of a practical application of the outcome of the therapy.   Each of these things makes a difference to Mikayla, in what she can do, how long she can do it for and how independently she might be able to do a certain task!

The thing is, that while the therapy course HAS MADE A DIFFERENCE, Mikayla’s need for therapy at this stage is ongoing and a single course of therapy won’t make an ongoing difference indefinitely.  We know that if we do not continue to stretch Mikayla’s muscles regularly, they WILL continue to shorten and this will negatively affect her abilities.  We noticed that when we didn’t do the disassociation exercises for a few days when she was sick, she wasn’t able to pick up where we left off and we needed to give her some physical assistance to get back into the swing of them again, so we can see the need for repetition. We know, that every time Mikayla grows, her muscles do not keep up, and her body does not automatically adjust itself to physical changes or changes in gravity due to getting taller, and that ongoing therapeutic input and other interventions are important in helping her make these adjustments and in maintaining and hopefully continuing to improve her muscle lengths and strength.

We dont know how long it will last, BUT we DO KNOW that intensive therapy HAS made a difference.  It has made a difference for the past few months, and hopefully will continue to make a difference for months to come. The outcomes for Mikayla to date have been so positive, that we would like to give Mikayla the opportunity to do another course of Intensive Therapy in February to continue to build on the gains she has made.  A three week course costs nearly AU$8000 so we are currently fundraising towards this, as well as other therapy and equipment that can help make a difference to Mikayla now and into her future.  To read more about our fundraising efforts or to make a donation go to her webpage at www.developingfoundation.org.au/family/mikayla . The Developing Foundation is a registered charity which guarantees that 90% of funds donated to her via her webpage will go to her particular needs.  To find out more you can contact us at teammikayla@hotmail.com