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!