Latest update

Apologies for the delay in getting back to you ... best start with an update. As said before we've moved into our new house ... it is so nice to be in our own place again. Pictures to follow soon I promise once we've got rid of a few more boxes!!!! I've been at home for the last couple of weeks after my op (all went well!) and have become increasingly frustrated at not being able to do much of anything at all .......not easy doing very little when there is so much I can be doing. However, I know it's for the best in the long run if I do as I'm told so I've been catching up on dvd's, reading and playing the piano which in itself has been rather nice I guess. Have resigned myself to relax and enjoy it since I won't be getting a chance like it again for some time!!!!

In the meantime the boys are all doing really well. Cameron has started a new school since the move and now goes to Somerfield School. He loves it and hasn't looked back which is just fantastic. He really is doing very well and has settled in and started making new friends. Ewan is much the same ... still a cheeky little monkey but I don't expect that to change for a while .. if ever! Finlay also continues to do really well. He has reached 8kg which apparently is quite a milestone for children who are born smaller. His sugars are still all over the place but we don't see that changing for a while so continue to chase them as best we can. Have had a couple of sleepless nights with him falling very low and us being afraid to sleep in case he went into a diabetic coma .... but he is fine ..... Alan and I on the otherhand are exhausted so fingers crossed for a better night tonight please.

The next steps for him are an echo, early May, followed by an appointment with his cardiologist who will be down from Starship Hospital. This will give us an indicator of how his heart is coping and whether the diaretics that he is on are doing their job and holding further heart failure at bay. A decision has also been made about his feeding. Because he will need assisted feeding long-term (likely to be 2 years at least) we have decided for him to have a gastrostomy. This is an opening in the skin for a tube to go through the stomach wall into the stomach. The only downside that we can see at the moment is that he will have to have a general anaesthetic which gives him extra complications because of the diabetes. But it is a standard procedure which will be easier in the long-run. We will keep you posted.