merry Christmas and a sad new year

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 sent him into sensory overload) but overall it was lovely and quiet.

then the day after boxing day Jax took seriously ill we couldn’t maintain his SATs his breathing was all over the place he was just ill. we took him to our local ‘super hospital’ but we couldn’t find anything wrong at one point they even suspected he had meningitis but the lumbar puncture proved clear.

after a massive poo explosion we left the hospital with a working diagnosis of rotavirus.

unfortunately the following day he didn’t improve at all he just got worse and ended up been blue lighted back to the super hospital and then onwards to his hospital where we still are at.

Jackson has lost a huge amount of weight (over 1kg in 10 days ) he is not tolerating anything from feed to dioralyte. he is reacting screaming and exploding! he is severely malnourished and has lost all of his subcutaneous fat. the worst part is that he has lost his sparkle 🙁

today we having a operation called a gastro-jejunal insertion (G-Jej). where there will change his peg (where he is fed direct into his tummy) to another sort of button that has an extension on the inside that bypasses the stomach completely and feeds nutrients direct into his bowel.

TO DATE: ALL of the test they have carried out on Jackson are NORMAL there is no explanation as to why this has happened we do not know if the G-jej will work or if its all part of his undiagnosed underlying neuro problem that currently we cant fix because we don’t know what is wrong.

we are living in hell.

I’m updating his facebook page regulary and I will uodate this in more detail when we get time but thank you all for your continued support

fingers crossed today goes well xx