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 firstname.lastname@example.org