This post began quite some time ago – just after the second aborted surgery attempt I think. Feeling 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!!
During 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.
Although 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. She 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.
Mikayla started off committing to 3 times a week in the water in a combination of hydrotherapy and specialized swimming activities to help keep her moving. 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.
Learning to walk in water with a pool noodle
taking steps without assistance
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!