How long is the longest day of the year?


We had waited for months for this appointment in the NRH which, we had been told when Pádraig was discharged, would in some way continue with the therapies and neuro-rehabilitation Pádraig needed when he was at home.

So we went to the NRH having great expectations. Pádraig had an appointment with a speech and language therapist (SLT) as well as with an occupational therapist (OT). We were wondering how they would organise his outpatient treatment, how often would they see him, what their goals would be for Pádraig? Better head control, upper body stability, sitting, posture, trying out different textures in food, mouth/lips/swallowing exercises, learning how to use his voice more often and more regularly and purposefully – we were sure the specialists would come up with a prioritised list of therapies and goals out of the long list of needs Pádraig has.

When we went their yesterday for the appointment, full of hope, we rapidly realised that this was a check up on Pádraig, on us, on how we were all doing. There were a few lists to be filled in, some questions to be answered, with therapists who didn’t know anything about Pádraig apart from what they were reading in the files they had with them. So there we were, telling them how we were all doing, how Pádraig needed more therapies, and they telling us that they were surprised to see Pádraig in such a good shape. That other persons in his situation could have spasms so strong that they were not able to stretch out their arms any longer, meaning that terrible wounds would develop in their arm pits. In this case, they would use splints – something you would use to immobilise a broken bone… My question, whether they felt this was right, I don’t think was even understood.

Today, Pádraig had his monthly physio visit. Yes, once a month he has a visit by a physio. Again, the question whether that was right, whether that was sufficient, I don’t think was even understood.

Today, and here is the good news, the Communicator 5 and the Tobii eye tracking software and device arrived for a two week trial. It is truly wonderful to see that if you want you can do things. If you are determined, you can make things happen. Even if you work within a system that is difficult to navigate. Can you imagine how Pádraig will benefit from a device that will help him with communication? He really wants to communicate, take part in discussions, let us know how he feels and what he would like to do, how he would like to dress, what he would like to eat, and whether he is thirsty or not and millions of things more. There is a good chance that he will get the device, not just for three months, like the MOTOMed, but for his exclusive use. There are, even on terribly difficult roads, people who are so wonderful that they make you forget your troubles.

We’re getting ready to go to Boston and cycle on to the Cape. Today, we heard that there will be a journalist from a Cape Cod news outlet there on Monday in Brewster, together with a photographer. And, with a bit of luck, a journalist from a big big Boston newspaper.

And, finally, check out – two very generous contributions of 50k and 5k were added today and there are dozens of small and large contributions by people, some friends, some from people we never heard of. We will get there. No doubt. We will raise this funding. Just keep spreading the word!