olivers journey with bws and cdc

olivers journey with bws and cdc Oliver was born with beckwith weidemann syndrome and cri du chat syndrome

03/09/2026

Such a happy boy 😍

Oliver has been on his first proper road trip, to disneyland followed by the south of france. Hes been an absolute super...
03/09/2026

Oliver has been on his first proper road trip, to disneyland followed by the south of france. Hes been an absolute superstar with the heat, and been his usual happy content self(minus pulling pegs out at least twice a day 🙈)

Yesterday Oliver was back at the rvi for another surgery. Thankfully not a major one but he is feeling very uncomfortabl...
10/07/2026

Yesterday Oliver was back at the rvi for another surgery. Thankfully not a major one but he is feeling very uncomfortable and sore with no energy to do anything.

He had a camera down his throat to see if we could find the cause of the black sick/drainage bag he gets but there was nothing there to find the cause,so while that's good news we are still none the wiser,but biopsies have been taken.

He had a camera through his stoma as he looked to have ulcers on the outside and bleeding,but the inside of the stoma looked healthy. But biopsies have been taken.

They then did a repeat of his stage 2 orchiopexy,to pull his right testicle back from the groin and stitch back into place after the last time failed,they think the right testicle could be starting to die off,so we will see at his follow up in 6months time.

They then also put his jej/ gastrostomy pegs in and out several times to see if removing the scarring around them would make any difference to us getting them back in when he pulls them out,but the surgeon doesn't think it would make much difference and the risk is that the scarring would grow back worse,so it would just be an emergency surgery job if we couldn't get either back in.

He was also due his botox in his Salivery glands to stop him choking on his secretions but yet again ENT cancelled on us. He is meant to have it 3-4 times a year and in the past 15months he's had it 3times. No matter how many times I phone and tell them he's choking, or that the surgeon rearranged her full surgery clinics twice in the past 2 months to fit it alongside so we could do less general anesthetic they still cancelled both times.

Olivers had Speech and language and occupational therapy today, it was a very hard and tiring session for Oliver,but he ...
29/05/2026

Olivers had Speech and language and occupational therapy today, it was a very hard and tiring session for Oliver,but he tried so hard.

They brought an eye gaze to see if its a way we can go forward in Oliver communicating. The aim is to have things on the screen and he then focuses in on one thing with his eyes,it says what he wants and then we do the action,eg dad give a kiss,mum a high 5.

Oliver tried so hard with this but the time he had to focus on the thing he wanted took to long before it registered, so it's whether we try again with a quicker response time.

They then also tried doing similar things like peter rabbit or sing a song but on a tablet for Oliver to press and get the instant reaction,but he was struggling with the pressing the buttons on the pad to make it work,although he did manage to press it a few times.

They are going to try some different things to try make a more sensitive touch on a tablet or similar device to see if that would help.

Oliver got his new pushchair today, it's been a fairly long process as we declined the one offered through the NHS as it...
28/05/2026

Oliver got his new pushchair today, it's been a fairly long process as we declined the one offered through the NHS as it was unsuitable for his needs so we had to wait months for an assessment at the William merrit centre to find one that we wanted. We settled on the hoggi which was £4,300 so then we had to try find a charity to help us towards the cost of it,followed by 8weeks for it to be built.

This also means Oliver is now unable to access the NHS wheelchair services for 3years so we had to find one that would last him. But we absolutely love this pushchair for him,and he looks so much comfier and fits better in it.

A few weeks ago we were given the go ahead to start trying Oliver on little tasters of food orally, as we have his stoma...
20/05/2026

A few weeks ago we were given the go ahead to start trying Oliver on little tasters of food orally, as we have his stomach on free drainage it means anything he does have should go straight into the bag. if it wasn't we would know hes then aspirating. We do still run the risk it going onto his lungs and causing a chest infection but it's the best way without a fluoroscopy of seeing if he still has an unsafe swallow.

We know he is never going to manage liquids,or large amounts of food due to how slow his stomach takes to pass food through,but even tasters like this is something I never thought he would ever manage. 💙

Oliver got the all clear for another 3months on his cancer scan 🙌 hes feeling better and stopped pulling his pegs out af...
01/05/2026

Oliver got the all clear for another 3months on his cancer scan 🙌 hes feeling better and stopped pulling his pegs out after some antibiotics for a peg infection. We finally have the pre start meeting next week to get the ball rolling on the extension, and have found a charity to help fund the remaining half of the £4,300 for olivers new pushchair so once the funds are released it will hopefully be built and ready in 6-8 weeks 🤞

Our little mandalorian for World book day, thanks to family fund for the adaptive costume
05/03/2026

Our little mandalorian for World book day, thanks to family fund for the adaptive costume

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Thirsk
North Yorkshire

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