Category Archives: surgery

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!

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  

Growth – friend and foe

IT is lovely to watch your children grow and blossom though the stages of childhood. All of us with little ones would be familiar with the phrase “My how they’ve grown” so often uttered by those who havent seen them recently or who don’t see them often! The joys that come with “growing up” and being able to do more things, as well as the benefits which come with deeper insights and a greater level of understanding of things in a broader context.

Mikayla experienced significant physical growth throughout last year.
Unfortunately, for kids with CP there is a “foe” in this growth as well. With growth comes increased weight and height which not only means that little bodies need to constantly relearn how to operate under additional forces, but also weaker muscles are exposed under the strain of greater gravitational forces and the strain of supporting heavier weight. Also, muscles affected by spasticity simply dont stretch enough to keep up with bone growth which means they also end up being shorter than they should be. In Mikayla’s case, her knee joints cannot acheive their full range of movement anymore and this called a contracture. Contracture is a term we had heard before – it was something that we needed to avoid, and stretching, strengthening, positioning etc have all partly aimed towards the goal of “not getting a contracture”! Although we have been lucky I guess to succeed in “putting them off” up to this point, to find out she now has contractures still feels somewhat like we have failed her in some way, (even though, we are told that it was more than likely inevitable that she would get some sort of contracture(s) of some degree at some point).

Anyway, despite our best efforts Mikayla’s muscle growth has not kept up with her bone growth and this has resulted in “contactures” in both her knees and probably her hip flexors too and at our last appointment with her orthopaedic specialist we were told that she was going to need soft tissue surgery. The plus side of that is we have still managed to avoid bony surgery (ie hip surgery) to this point at least, and the longer that can be put off too, the better I am told.
But still…..surgery???? THAT was not on our radar at this point! We have been monitoring her hips very closely under the hospitals hip surveillance program and have been hopeful that we would manage to avoid hip surgery….which we have so far. We knew that we were doing well if we could get to around 8yrs old without having any surgery, and with Mikayla having turned 9 we thought we had pretty much dodged the surgery bullet….. so the mention of surgery quite honestly came as a bit of a shock.

In any case here we are at 9.5yrs old looking at some quite significant surgical intervention to lengthen her hamstrings and probably a number of other muscles as a result.
With one appointment, our whole situation feels like it has changed so quickly! It feels like we have gone from making gains, achieving results, working towards new skills and abilities, with a team of people we know and feel comfortable with to suddenly now being shunted across to a different area to deal with surgery and rehab! IT feels a bit like we have been dropped back into the unknown which is sort of funny because we have always remained somewhat in the “unknown” – the thing is that we became sort of familiar with the bit of the undkown we were in, and now its like we have been landed in a “different bit of the unknown” and are starting the process of gathering information, getting to know new people and the lay of the land there, and basically trying to get a handle on this new situation (which is part and parcel of the old situation) – sound confusing – IT IS! Sound a little daunting – YEP IT IS THAT TOO!

Anyway, having been travelling this journey for more than 9yrs now, we have learned a few things along the way that might help us as work though this next chapter.
1) We are more experienced at negotiating the unknown, we have more contacts within it, and we have the benefit of broader technology and social media forums to help us find our way, and hopefully to find what we need to know to make the best decisions for Mikayla’s future as we can.

2) Feeling left to the “system” (a system that often seems to break down somewhere along the line) to contact you with your next appointment SUX. So another thing we have learned is “not to wait and assume that THE SYSTEM will take care of things”. Having learned this lesson, we did not leave it long in the lap of the gods, and have been proactive in contacting the hospital department and trying to find “someone” who can be some sort of point of contact. We have done some digging around to ensure we were on the relevant waiting lists, and are getting prepared with the relevant referals etc to get a second opinion, and the opportunity to ask further questions about the options should it become necessary.

3) In the meantime, I am researching (again) and getting on with now. Ploughing though the internet to try and find the information I need to be as informed as I can about ALL the options and anything else that might help at this point from dietary considerations, to alternative therapies, to treatment and maintenance/control of the contractures that have already developed, all the while trying to ensure we are continuing with all the things we do to try and avoid any further contractures from occurring………and balance all that with everything else that comes with family life.

Although we have a very brief and basic outline of what will be involved in the process, and the sort of testing that will now be done prior to surgery so that they can determine the best course of action and timing, I have to tell you I have far more questions than answers at this point. I am finding it hard to get my head around, hard to plan for the unknown, and hard to be left without knowing exactly when and where the next solid next step is.

So as we rejoice at the gains that have been made over time, and are thankful for everything that has been done in order that Mikayla is where she is now, we continue to struggle against the growth that has come and inevitably is yet to come, in order to “maintain”. Maintain the contractures where they are at the moment and try not to let them get worse. Maintain the skills Mikayla has worked so hard to achieve, that she has learned and had to relearn with each change to her body through both growth and various intervention. Maintain her ranges in other muscles and try to prevent further contractures from forming. Maintain our vigilance in striving for the best for her and making sure she isn’t lost in the “system”.

Maintain the best balance we can in life as we work through this new phase in the journey and continue to adapt to seemingly ever-changing circumstances.

Mikayla only receives 5 partly Medicare funded physio appointments in a calendar year! All other therapy is done at our own cost. Anyone wanting to donate towards the costs of Mikayla’s regular therapy requirements or her intensive therapy programs can do so on line at her charity website at http://www.developingfoundation.org.au/family/mikayla or can email us at teammikayla@hotmail.com for other methods.