Samuel had a happy day - content when awake and lots of smiles. He's starting to try to giggle which is hilarious, as he kind of snorts. We will try and capture it on video next time.
Yesterday we had a 'watcher' from the hospital watch Samuel for the afternoon so that Francis & I could spend the afternoon with the girls. It was great to be the four of us and we headed to the cinema to see 'Up'. In the weekends sometimes the hospital can arrange 'watchers', who are health care assistants, to be with patients to give families some respite. During the week there is a team of volunteer 'grandparents' who fulfil the same function, so we may try and make more use of this facility so that Francis & I can get some time together.
Today my sister Marion arrived for a 4 day visit, and she was lucky to get some cuddles and smiles from Samuel, which was lovely. So Francis is staying with Samuel for next 4 nights, so I get time with Marion and he can have nights to work on his final masters assignment - at hospital there are no other distractions, but at home there is always something else to do. So it works well for both of us!
The week ahead holds TPN training for us on Wed, Thurs and Friday. We will hopefully know more about ongoing options available to Samuel regarding trying to put in a GJ tube and they may try again with the use of a scope... or possibly try a joint radiologist/surgical implantation.... but we will wait to hear. Otherwise it is just more of the same - trying to get on top of his UTI with antibiotics and learning how to care for him.
Best wishes to all, X Shirl