Monthly Archives: February 2017

Jax asleep
Consultant been in and she agrees Jackson has a volume issue so we just have to go at his pace. At the minute while we can use his central line (into his heart) he will get his missing fluids via IVT. Once that goes when the dressing needs changing we […]

Jackson has a volume issue

The last day of February is the world’s rare disease day. Please share this or use a photo attached as your profile. Spread the word. Jax doesn’t fit into any box he is rare, unique and gorgeous. For more info….

Rare Diseases Day

It’s been a funny old week.. So Jax has been took off his PN feed completely. And his feed changed to one with more calories this seems to working well. YEAH ! But he isn’t tolerating the volume of feed he needs to meet his daily requirement (anyone else getting […]

A funny old week

Sensory Ball blanket
Today the hospital OT brought around a ball blanket for Jackson to try. It grounds him and is great for his sensory issues. The results were instant and Jax absolutely loves it. Definitely think it will be on his shopping list after his sensory room  

Sensory Ball Blanket success !

Picture of not very happy Jax
A not a very happy Jax has had a EEG&ECG to see if we can get to the bottom of his new movements. His Neuro also wanted to see how he reacted to stimuli (in this case the twirly woos) he was screaming shaking and wobbling laughing and crying so […]

A not a very happy Jax

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

Isolation Nursing Sign
The last few days Jax has struggled with his feed we lowered it yesterday and continued with his PN feed. He has struggled this morning so it has been stopped completely to give his gastro system a break Yesterday I noticed a spot on his thigh this had now spread […]

Chicken Pox !