Yearly Archives: 2016


this week has been full of lots of appointments and catch ups with his team. Jackson is really struggling to get back to himself after this surgery. in all honesty I totally regret letting him have any surgery (although he needed it). we are still been positive and looking on […]

disappointing week


Jacksons operation took place on the 3rd November he was in theatre for 5 hours!!! the operation itself was a success he only spend 24 hours in intensive care then was allowed back to the surgical ward. we had been warned about some of the possible side effects of a […]

November update


It’s finally arrived… the day we have been waiting for and dreading. we are just waiting for the call then he is going to theatre for fundoplication, repair of gastrostomy, corrections of over granulation. it’s going to be a long day xxx

Operation day



its been a crazy few weeks for us, Jackson has a bug which he just cant shift (sickness & diarrhoea). to go alongside this he is struggling sensory wise as well as the winter weather coming in meaning that he is started to work harder when he is breathing due […]

where have we been?


to update on what has been happening with Jackson is as per usual, very varied. we started last Thursday going back in hospital to have the overgranulation of his peg site cauterised. the following day unfortunately Jax was in a lot of pain due to the healthy skin around the […]

what a week (sorry for the rambling)


Well after a couple of awful days in and out of hospital, yet more antibiotics and dressings later. Yet again our sort during little man has stood up by himself. I’m ecstatic! Words can’t describe how proud I am. Unfortunately I can’t upload the video on here I’ll try on […]

Wow wow wow



well we have been back in hospital again because of the overgranulation around Jacksons peg. it has been cortorised again and will need repeating again in 10days. unfortunately this time round the skin around the granulation has been burnt meaning that needs treatment and the granulation has already started coming […]

what a week


tonight, against all odds, I took the kids to see Mary Poppins at the theatre royal. if I’m honest I was dreading it…. the reason being is that the tickets were booked over a year ago when my husbands rota meant he was home to look after Jax, obviously that […]

Jacksons first trip to the theatre


WARNING: contains images some people might not like. since Jackson had his Mickey button (his gastrostomy) fitted Jun 16, we have had issues with over granulation (this is where the skin is trying to repair the hole that was made).  we have tried every ointment, cream and dressing that is available in […]

another visit to hospital



 ANOTHER CRAZY AMAZING DAY.. today was started with a visit from Occupational Therapy (OT) that didn’t go down to well. Jax, as always, tried his best but he was having major issues with his hands and feet he wasn’t able to grasp or hold things how he normal does. we […]

sad morning AMAZING afternoon