4th July – MRI booked for Friday this means we are one step closer to GOSH. We are also trying to wean him off daytime oxygen

6th July – Jackson is doing AMAZING with his walking he is like a machine on his frame. Physio are brilliant we are working on him standing and saving. I know he will get there #veryproud

7th July – It’s MRI day. He has been on dioralyte since 7am (and started retching). His PN got decreased 2 days ago his feed increased and his oxygen is now 22 hrs a day not 24. Quite a lot of changes for a sensitive boy to deal with.

What a day ! Unfortunately I never got to speak to Jackson’s consultant to clarify why the changes in his feed and PN. But he did get his MRI of the brain. We are not expecting it to show anything but its a tick in the box for Great Ormond Street Hospital.
When the anaesthetic wore off he went into difficulties he forgot that he needed to breathe quite a lot of times over a half hour period. He went blue again and needed help from me his nurse and of course his big sister. Apart from been really pale he is back to normal. Thank you for all your words of support today