Tilly was transferred from Virginia back to the NIH in Bethesda last weekend.  The reason being that the NIH have the expertise on her main condition, in case of any 'post-op' complications.

The pain is more or less under control but she does have a few swollen areas that are badly bruised and causing concern(s).  She is due for a large number of blood samples in the morning and so is nil-by-mouth.  Her canula has stopped working, not flushing, which probably means it will be replaced, much to her dismay.  Also, because of previous history of MRSA, she cannot mix with other children in the play areas until test results of nasal swabs are returned and they are negative.

Late last night she had me pulling her around the hospital in a special cart as she kept calling me waiter!!!  She also, for the record, keeps shouting out at the top of her voice 'weeeeeeeeeeeee' when I put the bed pan under her cast when she needs to go which does make me laugh!!!

The last few weeks have really been stressful for us all and we really appreciate all your kind messages of support. 

Seeing what sick children go through every day can help put things about your own problems into perspective and makes you think 'I need to make changes in my life to appreciate what I have and what I can offer others less fortunate. 

I will keep you all posted and thanks for reading!

Kind regards

Colin

PS - Cant sleep as Tilly is next to me and snoring so loud!!!