A few things first. News. Nothing dramatic, but worthwhile sharing. First, it turns out that Pádraig has a really great physio therapist. He is using something called Vojta Therapy which is working wonders on Pádraig apparently. We’ll join this therapist tomorrow morning at 8:45 for a session with Pádraig and I’m really curious to see how this works. Second, Pádraig has developed a great relationship with his music therapist. At the beginning we were not so sure about the benefits of music therapy – we were looking for ‘hard core’ physical therapy, the more the better – but have learned and observed the magic that is happening there between Pádraig and the therapist. It is really something else. To me, this man through his music and dedication has really found a door to communicate with Pádraig. Third, to us it seemed that Pádraig was doing better answering questions and eating than on other days. Not sure if this is the ‘drugs at work’ or whether it was just one of those good days. Finally, we had an ad hoc meeting today with Pádraig’s physio and OT, together with someone from what in Germany is called a ‘Sanitätshaus’, the suppliers of ‘gadgets’, wheelchairs, for example.

(As an aside, this meeting of about 45 minutes counted as a double therapy session. To explain: there are 300 minutes of ‘therapy’ Pádraig and other patients like him are entitled to per day. 180 minutes are for ‘Pflege’ (nursing and care), 120 minutes are for ‘proper’ therapy. Today’s meeting with the lady looking after the wheelchair, counted for 90 minutes (45 minutes x 2) – which left 30 minutes for music therapy.)

So what about the change?

I looked back today at the different situations we found ourselves in over the past 15 months or so. Coming to Germany, we were so full of hope and energy. We believed that access to first class therapy here in Hamburg would really turn things around for Pádraig. Looking back, he did get so much better, although he is really taking his time, so he is.

In the Schön-Klinik, doctors have started to mention that there isn’t really that much more they think they can do for Pádraig. Following our visits to several different rehab centres, we kind of agree with them. But then, we did not come here primarily for Pádraig to be looked after by doctors, but by therapists. And having quality time with quality therapists ain’t easy.

In addition, I have really got very tired of fighting the impossible fight in institutions. There will always be some really excellent people, but there are also some not to brilliant people. They all have different views and approaches, some really good and convincing, some not quite.

If you count the hours, I think Pat and I are delivering more ‘therapy’ to Pádraig than anyone else. There is no way we could do this at the level of his new brilliant Vojta specialist, or his magical music therapist, but we are certainly putting in the same if not more time.

And here is the change: I believe Pádraig will soon (within a few months) be leaving institutionalised care. And we will have to find the best way possible to look after him ourselves. So from now on, that’s what we’ll be doing: getting ready for the big day.

One stepping stone towards that day is getting him a new wheelchair – and there are amazing ones around that would really help him, literally, to get onto his feet. Check this out.

Loads of writing. Few pictures. Lots of thoughts.