Tag Archives: Mikayla

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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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  

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

horse riding / therapy

IMG_5001Mikayla has now been doing horseriding for 12 months and what a fantastic activity this has proven to be for her!

Not only is it fun, but it naturally provides the kind of work out Mikayla’s body needs.  Core strength, alignment correction to maintain an upright middle posture, balance, coordination, control, disassociation (working arms independently to legs and one side of the body separately from the other), multitasking (staying on the horse, perhaps steering and maybe even talking all at the same time!) right through to a nice big voice for commands such as “walk on”, “trot” and “woo”!

Mikayla has great instructor who balances well her physical workout  and horsemanship needs and lines it with just enough fun and laughter.  These days as a bonus, I get a free work out too – running along beside her as a spotter!

Mikayla has progressed in few key areas over the past 12 months.  Her endurance has definitely improved with an increased ability to maintain her alignment on the horse in a nice upright posture.  She has been able to do a trot, has improved in her ability to maintain herself while trotting and has even begun trying to do a rising trot !  Although her ability and stability does still fluctuate, there is no doubt that it is doing her good on a number of levels, and it is great to see her making improvements and setting herself (and her instructor) some goals for the future!

Mikaylas own personal goal is to achieve greater independence on the horse, to be able to take control of the reins and steer independently,  and one day she even wants to be able to canter!

Physical benefits and the workout each session is for her aside, horse riding is a fantastic experience for her and I’m sure will be among her fondest childhood memories……..

We are thankful of the kind donations we have received towards helping with the cost of this therapeutic activity for Mikayla.  It is a valuable part of both her therapeutic routine and an activity that she loves and looks forward to!

Those who would like to find out more about the things we are currently fundraising for to help make a difference for Mikayla OR to make a donation can go to http://www.developingfoundation.org.au/family/mikayla

 

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

Post Intensive Post 3

So today we had another first (of sorts).  This time it involved her manual wheelchair.  Today when I picked her up from school she asked me to remove her armrests because she wanted to propel herself and see how far she could go.  Although it was slow going, and she needed to adjust her steering quite often, she made it all the way to the car.  What impressed me about this was a couple of things: – 1) her own personal drive and determination to do this (especially at the end of the day. 2) her improved trunk strength which is evident at the moment 3) the confidence she displayed by her desire to even try going down the long ramped walkway to the car park independently as long as I was close by to help if she needed it 4) the hand and arm strength demonstrated to control the speed of the chair on the downward slope 5) the problem-solving ability she used in trying a few different hand positions and methods to control her speed and steering on the downward slope and working out the  strategy that seemed to work best for her and that she felt safest with. 6) her determination to see the challenge that she gave herself through to the end and achieve her goal – which she did!

For me, I am glad that I happened to have the time to indulge Mikayla in this impromptu exploration of new-found strength, confidence and skill.  It is not always possible!……. and sometimes the demands of life can be so hectic that opportunities such as this can be lost!  I am thankful that today I was tuned in so to speak, and could afford the additional half hour that it took to get to the car from the classroom.

I was overjoyed at her effort!  Mikayla on the other hand, although she had a smile brimming from ear to ear at making it independently, simply took it in her stride (as she tends to do, downplaying the whole thing and indicating that I am completely over the top).  When I asked her what she thought about it, she simply said, “well it was a lot of effort and I feel a bit tired now!”

Does the fact that she decided to give that a go today, and succeeded,  mean that this will happen from now on?  No. (not at this stage anyway)  Does it mean that she knows she “can” do this, and might apply the skills she tried out in some other circumstance?  Maybe….. Hopefully!

I’m not sure she if she will want to do it again.  That remains to be seen.  But, knowing Mikayla,  I think she will tuck that little achievement away, and might just pull it out somewhere, sometime when I least expect it most probably!

Who knows the next thing she will set her mind to,  what it will be that she wants “to have a go at” ………….  But one thing is for sure, I hope, that whenever and whatever it is, I will be in a position to support her in giving it her best….because who knows what might come of it 🙂

Post Intensive Post 2

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

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

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

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

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

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