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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  

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

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 15 Final Day Intensive Therapy

Today is Day 15, the final day of intensive therapy for Mikayla.
This whole 3 weeks has certainly been a bit of an emotional rollercoaster and today is no exception –  I am happy to be seeing some fruits from the labour, sad that we are approaching the end of the therapy, worried about how, when and where we will be able to access more in the future,  glad to be able to spend more time at home again soon,  overwhelmed by the catching up there is to do in other aspects of life now, and thoughtful about how to incorporate new helpful exercises into our daily routine.

Intensive Therapy group photoDuring the course, as at other times throughout our journey,  relationships have been forged and then parted ways, and today was quite sad to say good-bye to everyone.  We will miss the rapport that has built amongst the group – kids, parents, therpists.   However, with social media contacts now exchanged, there have been some new connections made which is nice.  And we can at least continue to share information, stories, journeys.

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Today, I can not help but feel a little disappointed that there isn’t just one more week to go, to allow that extra bit of time for Mikayla practise and further consolidate all the good things that we are seeing.  At the same time however, I can see that Mikayla is physically tired and will be pleased to have a rest from the physical demands on her and also the concentration and focus that is required.

Mikayla’s response to the end of therapy was that there  should definitely be a party for our last day, and helping her organise that has been a welcome distraction in a way!  She has been busy organising what we should wear, who should bring and do what, and subsequently we all donned our PJs or onesies (as this is the current craze apparently), and brought some party food to celebrate the efforts of the past 3 weeks!

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As it turns out, it is possible to wear a suit over your onesie (or your PJs), and indeed to deliver therapy whilst wearing your onesie ….(just in case anyone might be wondering)!   So at the same time as taking down our home programs, taking note of the great work the kids were doing, having a last chat with new friends, asking any last minute questions/advice etc, it was lovely to have that added bit of light hearted fun!

So what were the end results for Mikayla?  Well, for us, it will be a continuing journey of discovery as to how it all comes together, how long it lasts and all the flow on affects.  So stay tuned for that I say!!   From my observations and those of her therapists during the course, Mikayla has made some really good progress in the following areas and has finished the program with :
* improved body awareness, including increased awareness of her centre and self correcting   her body alignment more often
* greater pelvic stability
* greater trunk contol
* looser, lengthened and strengthened muscles in various areas      *better flexibility    *less tone  and *improved trunk rotation during exercises

Some pretty cool things we saw during the therapy included:
* the spontaneous knee walk steps she did, which was pretty awesome!
* putting a hand out to stabilize to the side when she lost balance one time      * pushing up on her arms better in transitions      * more use of a 4 point crawling pattern rather than “bunny hopping”      * visible improvement in her alignment    *longer, freer steps in her walker with less “kneeing in” and less “foot tripping”  * better weight-shifting from side to side  * vastly improved ball handling skills including throwing and catching using 2 hands (which she cant wait to show off at home over the weekend!)

I think that is a pretty impressive list!   (and I might even think of more as I go back through the photos and videos taken to help us at home.)  We have also been told that there could even be further improvement over the coming weeks as she recovers from the physical intensity of the course.

I think it is important to note here, that we weren’t expecting miracles in doing this, nor were we promised any!  We are simply always looking for options that have positive outcomes for Mikayla with the aim of helping her to reach her fullest potential,  be as independent as she can be, and need to rely on as little equipment and modification of her environment as possible into the future.

We went into this therapy program hoping that it would deliver “….strengthening and conditioning, decreasing unwanted reflexes and teaching new improved motor patterns through repetition and correct alignment.” (NAPA Center Website)  We saw the potential benefit in “having the time to thoroughly prepare the patient to exercise”(NAPA Center Website) and wanted to try out the “suit”  and see whether it was a useful tool for Mikayla.  We hoped that participating in this program would help Mikayla gain greater control over her body making some of her daily movement and tasks improved and hopefully easier.  We did not expect that after a single 3 week course, Mikayla would simply get up and walk out of the hall independently!  That is not the nature of Cerebral Palsy nor what we were doing here.  HOWEVER, this intensive therapy course (which was delivered by the NAPA Center by the way)  was a great opportunity for Mikayla, it has given her a real boost, and it has given us another foundation to build on, another string to our bow.

So although we are at the end of this 3 week intensive therapy program, this isn’t the end of the road. The hard work continues from here, in order to maintain her progress, and ideally to further build on it through our home program and incorporating new activities, as well as with the ongoing therapy and interventions she already does.

It is important to understand, that therapy (in one form or another) is an ongoing part of life for Mikayla!  For now at least, there simply isn’t one single answer or one single path to get wherever you are aiming.  There have been a number of therapies, therapy methods, interventions and treatments over the years that have had positive results and contributed to getting Mikayla to where she is today.  Now, we can also add Intensive Therapy and use of “the suit” to the list!….

After a little rest, we will start the challenging task of fundraising once again, so that we will be able to give Mikayla another opportunity to benefit from Intensive Therapy and Suit Therapy in the future (perhaps about 6 months time), to further build on what has been achieved, and to “Make a difference to Mikayla’s life”…..because that is ultimately what it is all about!!

Mikayla's therapists for intensive

Mikayla with her therapists

What were some of the end talleys:
* 48 hrs of therapy
* approx. 28 hrs of travel time (thanks in part to detours and delays caused by some poorly planned and timed roadworks on the only access way to the freeway from our area!!)
* 2777.9 kms of travel to therapy (thanks in part to some very long detours due to roadworks mentioned above!!!)
* approx AU$370 in petrol costs

Anyone wishing to make a donation towards the costs of this specialized therapy for Mikayla can do so online via the blue donate now button under her photo at http://www.developingfoundation.org.au/family/mikayla

 

Fundraising for Mikayla’s needs

i-am-mikayla.jpgWe have linked in with a great charity called “The Developing Foundation” who supports families like ours to raise funds towards achieving their vision for kids with additional needs like Mikayla. Although the decision to help Mikayla in every way we can is easy, putting yourself out there enlisting help is not, and anyone who know us, would know that taking this step has not been an easy decision. We are hoping that the benefits for Mikayla however are BOUNDLESS, and that with the help of supporters, we can really help her achieve all that she is capable of, and keep her life as barrier free as possible.

The Developing Foundation gives our family the opportunity to raise funds to help us continue to provide Mikayla with opportunities to further develop her abilities, increase her independence, and find ways of participating in activities that she loves. The donations Mikayla receives will help us continue to work towards overcoming the challenges that cerebral palsy presents Mikayla every day, and give her every chance to “become all she can be and fully experience life”!

To help Mikayla achieve her goals and make a difference to her future, you can:

• Donate online by clicking the blue ‘DONATE NOW’ button under Mikayla’s photo at www.developingfoundation.org.au/family/mikayla and receive an automatic tax deductible receipt for donations $2 and over
• Share this information with your family, friends, colleagues, and anyone else you can think of to help us increase awareness of The Developing Foundation and our fundraising efforts to help Mikayla.
• Help us raise sponsorship for our team through participation at the Annual Brisbane Riverwalk event by collecting donations on our behalf using pre-printed receipts supplied by The Developing Foundation Inc.
• All donations of $2 or more are tax deductible. The Developing Foundation commits 90% of funds raised by or donated to our team, to these unmet needs. The remaining 10% is used by the charity to cover credit card charges, administration and support.
If you have a question for our team please email teammikayla@hotmail.com

Thank you for your support, it means a lot to us, and will help make a difference to Mikayla both now and to her future.
teammikayla_lores.jpg

YOU CAN BECOME ONE OF MIKAYLA’S ANGELS NOW BY MAKING A DONATION.

Go to www.developingfoundation.org.au/family/mikayla or contact us at teammikayla@hotmail.com for more information.

Mikayla and family