Monthly Archives: October 2017




Jackson is still very poorly and flat and retchy. He’s on iv antibiotics but because he keeps spiking temps over 39* we suspect it’s viral and not line infection. But good news, his consultant is back and has said that Jackson can’t deal with formula so she has arranged for […]

Little Wee Man – poorly again



Today started with physio which Jax loves. His physio is amazing.but today he was very flat. And not interested We brought him home for a few hours and he just slept and whimpered the whole time any movement results in retching so we took him back. Where he spiked a […]

Started with physio


So the cream for Jackson's bum never arrived on friday so I had a bit of a crazy mam moment (I'll never understand why things have to get to crisis before anyone listens). Anyway I point blank refused to give him feed. There's no way I was going to allow jax to suffer anymore. I also refused to use any creams on his bum. So the photos are of Fri Sat then today. Because of the drastic difference between the Fri & Sat it was agreed (Drs suggested it) that we keep him off feed last night as well. You can see the results yourself. For months we've believed it's been his antibiotics that have cause this to his bum now I believe it's been his feed all along. Nb: when I say I refused to feed him I mean his jej feed. He still got his 14hrs of TPN so got all of his nutrition. So today we went to support the girls from his sister's dance school at comp. It was too much for him to begin with but he came round he struggled with transitions but I'm super proud of him. Then we went back on feed..........
So the cream for Jackson’s bum never arrived on Friday so I had a bit of a crazy mam moment (I’ll never understand why things have to get to crisis before anyone listens). Anyway I point blank refused to give him feed. There’s no way I was going to allow […]

Jax’s Cream hasn’t arrived !


So Jax’s feed went back on at 4pm, this video was just after 5pm. I’m gutted!! I wish the feed could stop completely but I accept his needs some to stop his liver failing, So I predict things are going to go bad again 😣.  

WARNING this is distressing