Wow… the grand total raised by the FANTASTIC Hunter Theatre Arts is £756. The money will be split between Jax’s fund. Lucy Air Ambulance for Children & SWAN (uk) thank you so much miss Barbara & Charlie #jaxsarmy #answers4jax #teamHTA xx we love you thank you for your continued support […]

WOW – Thank you Hunter Theatre Arts

9th July 2018 Jackson has been having strange things come out of his drainage bag. This then turned into screaming pain when we accessed his peg or jej. Today he was in absolute agony and woke up screaming when I tried to give him his morning medicines so he didn’t […]

9-11th July Update

Jacksons big sister Erin has been a member of a dance school called Hunter Theatre Arts since she was his age (3yrs) so from birth Jax has been a regular at the studio. We are very fortunate and blessed that the staff, parents and children that go there are so […]

Hunter Theatre Arts

Great Ormond Street Hospital results are in… So Jackson’s problems are caused by his underlying undiagnosed condition which effects his autonomic nerve which is in charge of his cardio, respiratory, digestion, development etc. We don’t know what part of it is the primary cause. Plan for the future… get our […]

GOSH – The results are in

So today we have had a meeting with community & most of our hospital team to plan what is next for Jax. The facts are that 18 months as an inpatient and we are no further forward with Jackson (in some cases he is worse off) than he was on […]

Bittersweet meeting

So yesterday, due to a “computer error”, Jackson overdosed and was given a double dose of all his morning medication – this resulted in him being total wiped out (possibly unconscious). Thankfully his child minder was with him the whole time to make sure he was safe. When Dad returned […]

“Computer Error” = Overdose !

So Jackson has been improving day by day. His bum has broken down due to his IV antibiotics but he’s starting to perk up a bit. Still no news yet from GOSH but they said it will take up to 4 weeks to collate the results. And look who’s back […]

Still waiting for results

GOSH Diary - day 20 image
Apart from his heart rate fluctuating, Jackson is doing really well. The staff are trying to sort us a room for transfer back, once they have, hopefully we will be trained on PN and sent home

Great Ormond Street Hospital Diary – Day 20

gosh-day19 image
The extra fluid has definitely giving Jackson his spark back. He’s back to trying to tear down his PN. So now the investigations are complete we are stable enough to be transferred back to RVI. We just need them to sort out a bed

Great Ormond Street Hospital Diary – Day 19

you wouldn't think this little man was just off to theatre. #gojax #answers4jax. Update 12.15: he's back on the ward just getting connected up for his AMD test this will run for the next 24 hrs
You wouldn’t think this little man was just off to theatre ! Update 12.15: he’s back on the ward just getting connected up for his AMD test this will run for the next 24 hrs Jackson got connected and the test started, throughout the day he has been fantastic but […]

Great Ormond Street Hospital Diary – Day 16