Little Wee Man

Get your hankies out. It gets better!!!! This was Jax earlier today not bad for the boy that “will probably never walk” nearly 2 weeks of frame work & daily walks a fab physio and lots of support. #gojax #hero #medicalmystery #answers4jax #jaxarmy

it just gets better

It’s been nearly 2 weeks since jax has had NO feed he has been living on purely PN and he has done AMAZING! we are super proud. The doctors are at a loss there is no answers or reasons why he can’t tole rate feed they’re no reasons why he […]

no feed = new Jackson

Unfortunately jackson hasn’t improved. He is on his strong IV antibiotics to fight his line infection but he still continues to spike a temperature. The hardest thing about it is we aren’t even getting smiles. Yesterday his eyes were open for about hour maximum. 🙁. His initial bloods have come […]

another line infection

THANK YOU for your continued fundraising for Jackson. Yesterday we recieved his protac ball blanket. This is to help jackson with his sensory processing disorder. THANK YOU for more info on what it does check out the website but bekieve us when we say the effect this has on Jax […]

fundraising- protac blanket

Happy bank holiday xx unfortunately jackson has had a bad turn. He is not tolerating any feed via stomach or bowel. We don’t know if it’s due to his blended diet or his startles (we have noisy neighbours). But his stomach or bowel aren’t doing anything. Anything that goes in […]

Easter Bank holiday

Get your tissues out. Absolutely over the moon at this. Jax new hospital physio has been brilliant and now he’s on his rocket fuel (PN) he did this today. He is using a frame called a Z frame hopefully he will get stronger and stronger. Last night he had more […]

Jax the amazing super walker

Jax first full day of blended diet and PN has gone good. we have had a lot of the puree back out even some of it coming into his jej tube. but Jackson is loving it he is even smacking his lips together the consultant said that he will be […]

we love the blended diet