This morning, while I was explaining to Rachel that I would be living on the fact that she hadn’t got me a present for our wedding anniversary for a good many years, Jude laughed. His first ever laugh. Me and Rachel looked at each other and laughed (then cried and laughed).
He was in great spirits but very difficult to pin down with a photograph until we got this.
Despite the fact that the last couple of weeks have been ‘interesting’ and he has got this now redundant tube sticking out of his stomach (nobody knows where it goes the other side) Jude is probably the best he has ever been. The seizures have reduced to a number we could probably count if we were that way inclined and he has more interest in his hands than ever before and he laughs.
Jude has a slow overnight feed through his nasogastric tube, then at 8am his first lot of drugs. Then another nasogastric feed about 9.30 – 10. Then some more drugs. Then at 12, some more drugs. Sometime when the time is available he has his laxatives. 1ish, another feed and at 4.00 some more drugs. Another feed around 6.00, more drugs at 8pm before we start to think about his overnight feed again. All of that and he is laughing.
I don’t know how he has the time.