A Saturday to relax. Its nice to have a day to do nothing (ok later we will do some cleaning and organizing but mostly nothing). I love that the boys are out riding their bikes and playing in the sand. One of the great things about living in an RV is that the boys can explore without going far.
They get out more than before. This builds their muscles which is a very good thing for them. And any time they need a break the RV is just a short distance away for them to cool off or rest.
This would be good for any children but for my boys its allowed them to become stronger than before. With Ehlers Danlos it is more difficult to build up muscles. It has to be done slowly. And muscles decondition much more quickly. So they need to constantly be doing a little bit. With Shaynen’s heat intolerance and easy fatigue from Ehlers Danlso and POTS having the RV nearby gives him the courage to do more.
There are many times that we have to debate and discuss if he has the energy to do something before we embark on an adventure. Sometimes we do not venture out because we are afraid he would not have the energy to get back on his own. We have his wheelchair to use sometimes for this, but sometimes that isn’t enough.
Their physical therapist and occupational therapist have noticed the difference in their muscle tone from when they began working with them last winter until now. Good changes.