By @enablingevie, May 15 2012 09:22PM
Sorry there hasn't been an update for a while. Things have been changing so quickly that it made sense to leave it a while before we knew where we were.
this will be the 3rd week in the Shooting Star CHASE hospice and things seem to be grinding to a halt once again :(
The stay in the hospice is aimed to get on top of managing Evie's feed and continuous discomfort. After many discussions and trials and errors Evie has now been put on a continuous ng feed (nasogastric). This means that she is attached to the feeding pump for most of the day and night. This has had some positive effect in that Evie is no longer vomitting as much as she was after each feed. However, Evie has constant discomfort as she feeds as it increases the severity of her stomach spasms and her reflux so less vomit unfortunately means more discomfort :(
The hospice have been completely amazing and Evie has been in the kind hands of some truly wonderful people. She even met a little dog last week who came in for some Pet therapy. Lots of feet licking :)
Chemo session 4 took place and although feeling very sickly, all should still be on track for session 5 on the 24th May.
So the hospice is trying to help with managing Evie's symptoms - of which the list is endless. So the feeding has been addressed again this week as although no longer losing weight, little Evie isn't putting much on either. The doctors at the hospice feel that it may be necessary to head back into hospital to see how to go forward with alternative methods of feeding that try to help ease Evie's pain and discomfort with such a basic life skill. Also more changes to medication which have their own side effects. Life is so very hard right now. Not really sure of what happens next- care needs to be better co-ordinated with the local community NHS service. Hmmmmm don't hold your breaths!
The sun came out when everyone arrived back at the hospice on Sunday and Evie is definitely her parents child with seeking comfort and pleasure in the warm sun on her face.
Today Mummy and Evie did some finger painting too :)
more photos have been uploaded to the website. Evie is now on twitter too- all you tweeters out there please RT and raise awareness of the website :) More events have been added to the calender too. Everyone has been truly amazing with their efforts :)
Will update again over the weekend once we know the next plan of action.
much love and cuddles as always