Little Wee Man


well Jackson has had a bad day today he started off with a massive apneo went down to 46% but came back with masked oxygen a few blows in the mouth luckily no other intervention but we were close. then he has continued to not tolerate his feed AT ALL. […]

blended diet


ive not updated you for awhile because there is nothing to update we are stuck in groundhog day.. its deja vu but on a different week. Jackson isnt tolerating his feeds AGAIN he is in pain AGAIN his feed gets stopped AGAIN he then loses weight AGAIN gets dehydrated AGAIN […]

no updates


Our gorgeous little man has been fed via a tube since he was a about a month old. He has a unsafe swallow and can’t coordinate his swallowing and breathing so ends up aspirating everything (imagine when your food goes down the wrong way) his feed went straight into his […]

feeding tube awareness week



  5 weeks today this nightmare started. we got sent home from hospital number 1 with a working diagnosis of rota virus. little did we know that 3 hospitals, 2 ambulances, 2 wards & 2 lots of surgery (one emergency) later we have 2 PEGS (one into his tummy one […]

5 weeks


its been awhile since ive had chance to properly sit down and update this. Jackson had a lovely Christmas, he was riddled with the cold bug and he had a few sensory issues with the wrapping paper (i.e. the different colours and the amount of it freaked him out and […]

merry Christmas and a sad new year


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)