Tag Archives: exercises

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.

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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.

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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!

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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!)

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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!

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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!
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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………

 

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

Day 1 Post Intensive Therapy

So we had the weekend off (sort of), which was much deserved after the past three weeks of intensive effort!  It was nice to catch up with family and chill out.  Catching up on all that has had to be left over the past few weeks has had to wait a little longer in order to allow for some “down time”,  attending to a little more homework, and spending a full day kicking off our fundraising efforts for another bout of intensive therapy in the future!

This morning it is back to reality, and experiencing a little of the post therapy blues that I have heard about from others who have been there before me!   We have been there before after other significant “interventions” and “events”, and indeed it seems to be part of the cycle of emotional highs and lows of this journey we are on.

Today I wanted to share with you a bit about our first attempt at integrating some of our ongoing home program into everyday life!  I had been thinking about this throughout the course, and over the weekend, and I decided first off,  to try and get even more organised in the morning before school and “warm Mikayla up for the day” by replacing my current routine with running through the “warm up routine” we did every morning of the intensive therapy program.

I did this cold turkey today, from memory, and  as it turned out, eventhough I was watching this same warm up routine every day for the past 3 weeks, I still needed some gentle prompting and guidance about “what I wasn’t quite doing correctly” from my amazing little girl (who clearly took it all in)  as I made my first attempt at the sequence on my own.  Together, we made it through her regime of stretching and dissociation exercises, but let me tell you, doing it myself gave me  even greater respect for the work Jess did with Mikayla every morning with a bright and cheerful disposition, hardly ever even working up a sweat.  Although not a seasoned professional like Jess, I think I ended up doing an ok job of it, but with considerably more effort and grunting and groaning on my part!!  Miss Mikayla, with her great sense of humour, found this quite comical so we both ended up having a bit of a laugh about it too, and it seems that I managed not only to warm up Mikayla for her day, but ended up giving myself a good work out in muscles I didn’t even remember that I had, at the same time!!!

Using a wobble cushion while doing some homework

Using a wobble cushion while doing some homework

As the days go on, and as I go over my notes and some of the footage we took, we will continue to look for other opportunities that we can “creatively”  take to “incorporate” helpful things into various aspects of  daily life.  This is after all what we have always done – it is not something new to us.  However, with  Mikayla being of school age, a big portion of time for setting up opportunities is lost with getting ready for and going to school, as well as the additional demands of homework and the physical and mental fatigue that results from this aspect of life.  In this phase,  I often feel the struggle to find the right balance!  I find it is a continuous process of trying things, adjusting, adding something else, trying something new, readjusting the routine, tweaking what you do, falling down and picking yourself back up again, and on the story goes.

Participating in various therapies and courses, interacting with other parents and meeting new therapists, can be great sources of inspiration and provide an extra burst of additional motivation to look at what you are doing and how.  And that is kind of where we are at again with this now.

There are, of course, only so many waking hours, and there is always much to do.  So I think it is important to keep perspective, and keep reminding myself that we are BOTH only human, and we are doing the best that we can to do all that we can do whilst maintaining an over all balance of all the important things in life 🙂

Week 1 Intensive Therapy

The therapists are always smiling and enthusiasticWell we made it through week 1 of the Intensive Therapy Program….and we are still smiling!

Firstly I want to say that the therapists are lovely and have shown an impressive level of knowledge, professionalism and commitment to what they are doing. Throughout the week, I was impressed with the way the therapists conducted themselves with the same level of energy, enthusiasm, and focus for each individual – whether it was the first child, on the first morning, the middle session  of “hump day”, or the last session of the week!

Here is a basic summary of the sorts of things this week entailed for Mikayla:
• Stretching muscles -abductors, hamstrings, hip flexors
• Dissociation Exercises – using right side and left separately
• Strengthening muscles – glutes, abductors, obliques
• Weight shifting – forwards/ backwards, side to side
• Alignment – finding and holding a neutral alignment
• Arm strength – weight-baring with straight elbows and flat hands
• Motor planning
• Stability
ALL of these things are challenging for Mikayla and take a lot of effort and concentration. She did a fantastic job focussing, listening, trying her best and persevering!

Stepping exercise
What sorts of differences did I notice during the week?

•There has been some improvement in Mikayla’s movement patterns during her exercises, with repetition. This would be expected because from experience we already know that Mikayla responds well to repetition, and needs to warm up to the task. There were definitely times I could see a better fluidity of movement in what she was doing. (there was a good example of that in the bench work she did and also in step work).
• There has been some improvement in strength. Most notably to me, in her right leg as a stabilizer when weight shifting, and in her arms. At one point today I couldn’t believe how long she was able to maintain weight bearing with her straight elbows without collapsing down onto her forearms for support.
• As the week progressed, the therapists were able to provide less support and prompting at times – things like lifting a leg to step up, squeezing her buns to stabilize and things like that.
• There are more things that I noticed as it was all happening – a moment when she held herself upright a bit longer, times were better pelvic stability were evident, times where she ‘looked good’ but the specifics of that are hard to explain. Some of the positive things I noticed were very subtle, but demonstrated a “difference” all the same.

Sometimes it can be really hard to relay this kind of information because there isn’t always something glaringly obvious or miraculous that is meaningful to those without specific experience/knowledge/and often history, with the individual (and I say that respectfully).

Taking a rest

 

During the week, there  were times that Mikayla was feeling tired and there were times that she was asked/encouraged to go a bit further – to push her limits….but just enough of a challenge, and nothing that seemed unreasonable for her.

 

 

Day 5 included trying some CME (Cuevas Medek Exercise)

CME trial - end of day 5

Today Mikayla had the opportunity to do an extra hour at the end of the day to try CME.  In this approach Mikayla was being exposed to the influence of gravity with the therapist providing “distal” support (I think this means providing support as far away as possible – or in other words providing the least amount of support that is possible).  It proved difficult to do with Mikayla mainly because of her size and weight which is right at the end of the scale for this kind of therapy because of what it entails.  Mikayla did a GREAT JOB, though, and there will be some further discussion about the best way to proceed regarding this into the coming week.

So overall,  there has definitely been a lot going on, and a lot to take in, for both Mikayla and Me!
I asked Mikayla what she thought of it all and she said “Good”.  So there you have it.

Heading home for some R&R

Heading home for some R&R

I think we are BOTH looking forward to some R&R this weekend. I will try and find it somewhere in between some of the other basics of day to day life and keeping a house and home as well – you all know the drill – laundry, cooking, cleaning, grocery shopping, bills, pets.  Then there is attending to schooling as there isn’t much time left by the time we get back home each day during the week.  There is all the usual parenting that goes with having two children (as wonderful as they both are), and of course attending to Mikayla’s daily assistance needs (minus “therapy” for a few days though) ……. and of course most importantly spending quality time as a family – with BOTH kids, and my husband.
Miss Mikayla has some school work to do, to help her keep up with her class, (although we did manage to creatively attend to some of it during the week here and there), but rest assured, she will definitely get time to play and chill out too!

TRAVEL TALLY FOR WEEK 1: 900kms 10hrs