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.
During 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.
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!
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 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