Thursday 13th March (2 weeks off 6 months!)

We went to GOS yesterday. We had a good trip up although it takes a good 3 hours, even with a pretty early start. They are very pleased with William’s progress and we are stopping the extra fluids so can get rid of the NG tube, Hoorah! We are going back in another month all being well and after that it will be longer before they need to see us. We saw a lot of people that we know from Fox. All in all, most of them are doing pretty well. Keller is at home, although still needing a lot of care and we caught up with Jack who is getting on well. I lightened the mood in the waiting area when I got up momentarily to help William with something and sat straight back down again only to find that my seat had returned to the upright position and that I was on the floor, it’s a good job that I have a well cushioned derriere! I always find that it is a bit of an emotional day going back to GOS. The home trip took a lot longer (no, we didn’t get lost this time) but there was a nasty crash on the motorway so it took about 4 ½ hours, not including our stop in Basingstoke to collect Gillie from Auntie Nicky’s, have a piece of cake and help Ella and Hannah build (or knock over) the world’s biggest duplo tower! William woke up with a temperature of 38.2 at 2am but we waited a while and it went back down on it’s own so we are all a bit tired today and hoping that we won’t have any more excitement of that kind.

Tuesday 11th March

WHAT is she trying to feed me today?

Grandma and Grandpa brought Phyllis to play with us today which we enjoyed very much.

Tuesday 11th March

Robert looked after William yesterday so that I was able to go to Lucy’s funeral. Nick went to the service with me. It was a truly, moving service. The loss of Lucy has left me deeply saddened and made me question what I believe. I am angry that anyone should lose a child and that life is so unfair. I admire the great courage that both Claire and Adrian showed at such a devastating time. I left knowing that so many people loved Lucy. That despite her tragically short life she will always be remembered and that she has left us all with many happy memories.

More pics

Thursday 6th March

We have been getting on very well at home. We have stopped William’s overnight milk (well non milk really but I digress) feed which at least means that I only have to get up when he hollers rather than setting the alarm for 3 or 4 am to change the bottles over. He is sleeping much better (touch wood because whenever I say that he has a bad night). We had a lovely family outing to the beach this weekend, no prizes for guessing which one! It was well worth the journey for a run around on the sand and chance to get water in our wellies. William’s Hickman line sprung a hole this week. So we traipsed over to Bristol via Bath (not sure why we bothered going to Bath first but at the time it seemed like the right thing to do) They cut off the faulty bit and glued a new bit back on so all ok now, we were anxious about an infection but seems that we have escaped this time. The location of this repair also means that the other repairs have been replaced, if that makes sense so fingers crossed we won’t have any more problems with it. It shouldn’t be too long now before he can have it removed.
We are obviously deeply saddened and touched by Lucy’s death and can hardly bear to imagine how Claire and Adrian must feel.

A Brave Little Girl

Lucy died on Monday our thoughts are with her family

News

With heavy hearts we write this entry. William continues to do well and Catherine will post his adventures later this week. Catherine has told you of the amazing family who had the room next to her and William on Fox when he first went in and how Claire kept Cath buoyant in those first weeks. On Saturday we had a sad email from Claire and Adrian. Lucy who is a couple of weeks older than William has reached the end of the road with her treatment and there is nothing left to try. They are going to a hospice this week for a few days to spend time together as a family. There is nothing else to say other than that our thoughts and prayers are with them every minute of the day.