Bonfire night and James

Quite a bit has happened in the last couple of months. As usual, some good, some bad.

Mo was becoming increasingly distressed during his morning journeys to school, exhibiting twisting behaviour that was a new (unwelcome) development this autumn. After a lot of to-ing and fro-ing, we eventually concluded that his new epilepsy medicine was to some extent to blame. To cut a long story short, we decided to wean Mo off that medication. We immediately saw some very positive results. Mo began travelling more comfortably again and the twisting reduced a lot.

James had an educational review - he is going through the process of "statementing", whereby his needs are assessed and provision discussed. Whilst we had always known he would need some assistance, this was the first occasion when the educational professionals were expressing that it was less than certain that James would be best served in mainstream education. For sure, at the moment, he requires one-to-one support. He may in addition need to be placed in a special educational unit better able to cater for his particular needs.

The good news is that James is loving his time at playschool at the moment. He seems to be developing well (by his standards), but his limitations do become increasingly apparent.

This was compounded by something that happened today (the reason I felt I had to write a diary entry). Sharon took James for a "routine" eye test - we had been feeling for some time that he was having difficulty with his vision. At this eye test, the consultant said that James did not have a physical problem with his vision - he is not short-sighted (in the conventional sense) as we had thought. In fact, it looks as though he has a neurological problem.

The consultant then made reference to an MRI scan James had quite some time ago. (This was a routine scan to assess the extent of James' epilepsy.) We knew at the time that the scan was not normal, but our understanding was that the scan showed an underdeveloped brain, which may well have developed normally from that point. The ophthalmic consultant however advised Sharon that there is some brain damage evident on the scan - in fact a similar (but much less significant) damage to that suffered by Morgan. The implication of this were that James may have great difficulty in processing certain types of visual information. Amongst other possible problems are spatial awareness difficulties.

Both of these ring true, from what we know of James. This comes as a bit of a shock, frankly. We don't really know what to say or think, in the light of this new revelation, but it's a bit of a kicker. We also don't know what other problems may arise (or have already arisen) from the neurological damage. Previously we had put James' development delay down to his long hospitalisation, but now it appears that there may be a more serious cause.

On to more pleasant thoughts: 5 November is a particularly significant date for us. Back in 2004, James had his first serious crash, resulting in the now famous blue light run to Alder Hey. For the first time, we had the opportunity to mark the anniversary most appropriately (for our non-UK readers, have a quick read >here< for the other significance of this date) and attended a bonfire and fireworks display with both the boys and with the friends who had been with us that night in 2004.

Morgan and James both enjoyed the display. Although the first bang took Mo by surprise, after that he really enjoyed the experience, grinning his head off, laughing and shouting with all the loud noises and bright flashes. James was up well beyond his bed time and became a little grouchy, but he still had a good time. And it was wonderful for us to enjoy it with them both, our miracle survivor twins. We really thank God for his grace to us and them.