Today Mikayla experienced flying a kite for the first time. The wind was quite strong but also steady, so it was a good day for it!
On this occasion I think the pictures speak a thousand words, and so will just let the photos speak for themselves….
Well Mikayla did great with the therapy, and after saying our goodbyes to the therapists and some new friends, we headed home with renewed focus and enthusiasm, and armed with some new ideas and exercises, and I might add, with Miss Mikayla in great shape!!! There is no doubt that having trained and experienced professionals work with Mikayla in a targeted, consistent, and intensive fashion for three weeks has had a number of benefits for Mikayla. If only therapeutic input of this kind was more available and affordable to children and families here, especially during their growth and development years. Thank goodness for those who contributed to our fundraising efforts to help towards the costs so that Mikayla could be given the opportunity to benefit! And there is no doubt in my mind that she has benefitted. Now it is back over to us, to continue to practise, and incorporate as much “therapy activity” into every day life…..continuing to strive towards achieving the right overall balance, negotiating the fine line between living in the now and providing the best physical foundations that we can for her current and future levels of independence.
You can make a difference by donating towards the costs of future intensive therapy for Mikayla, online by visiting her webpage at the registered charity The Developing Foundation Inc, by following the link http://www.developingfoundation.org.au/family/mikayla or by emailing us at firstname.lastname@example.org for other ways that you can make a donation including cheque or direct deposit into her charity bank account.
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
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
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 email@example.com for other methods.
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.
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!
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.
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.
The good thing is that through it all there have been smiles and fun and already some new achievements!
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!
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!
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………
On the weekend our family participated in The Developing Foundation’s 30th Annual Riverwalk Event in which families like ours can seek sponsorship for completing a 5km course to fundraise for unfunded and unmet needs.
Riverwalk 2013, was the 30th anniversary of the event. It was a beautiful spring day and we all enjoyed sharing it with family, friends, and supporters.
Although a 5km run might be a marathon for some, every step takes a marathon effort for Mikayla, and this year she was determined to have a go at starting off the course, walking. Mikayla managed to take an amazing 300 steps in her walking device, covering approximately 70metres, before changing over into her modified trike and finishing the rest of the 5km event, with the support of her team! What a massive achievement for a little person for whom simply standing up is challenge!
Mikayla, born 13 weeks prematurely, is no stranger to a challenge, facing them daily as a result of having Spastic Cerebral Palsy. We are so proud of her desire to have a go, and for the effort she puts into things she does. She takes so much in her stride, and her determined and fun-loving spirit is an inspiration to us!
Fundraising has been a necessity over the past few years where time is of the essence, and the specialized therapy and equipment that it has helped pay for, has made an enormous difference to Mikayla and to our family as a whole.
The wheelchair accessible vehicle has given Mikayla the freedom to get out and about in the community in her power wheelchair, and enables us to transport equipment such as her modified trike, walking devices, and hippocampe, making it possible to share in family activities such as bike riding, bushwalking, the beach and camping, together. Not only does such equipment contribute to her ability to do more things more independently which is important, but there are important physical and emotional benefits as well.
The cost of Mikayla’s ongoing therapy needs is largely unfunded, and has been for some time, yet it is still so important for her continued development and to help her body adjust to changes as she continues to grow. Fundraising via Riverwalk and other events we have done, also contributed to the costs of doing the NAPA Intensive Therapy Course earlier this year, the results of which were so impressive, that we are now fundraising toward the more than AU$8000 it will cost for her to do a further course in the new year.
We are very thankful to those who have been able to help make a difference to Mikayla, and to those who offer support in any of its many forms as we strive for the best outcomes for Mikayla as she continues to live with the everyday challenges that her cerebral palsy presents her. We are also like thankful for the opportunity that The Developing Foundation Inc gives our family, and others, to fundraise. Without the ability to fundraise, I am saddened to think of all the things Mikayla would be missing out on, from the physical gains she has made to the experiences she has been able to have, and will be able to have in the future.
Donations towards making a difference to Mikayla are still able to be made on line via her webpage at http://www.developingfoundation.org.au/family/mikayla or we can be contacted via firstname.lastname@example.org
Attached below are a few photos of Riverwalk 2013.