deathrey Posted April 1 Share Posted April 1 I agree with @MungoChutney and was going to suggest the same, a lot of supermarkets do the Little Dishes brand and the food is pretty decent quality and tastes like proper food if you know what I mean. I've bought them from Asda, Sainsbury and Waitrose before Quote Link to comment Share on other sites More sharing options...
simonworden Posted April 3 Share Posted April 3 Thanks for the info everyone. I don't think I really need much help from the airline unless they have a soundproof box for him or me to enter alone as it's only during the take off/ landing bit when he has to sit still that I'm worried.  I'll give the meals a look as I want to get my mum to stock the fridge a bit so he has something to eat for a few days until I can go shopping. Quote Link to comment Share on other sites More sharing options...
DavidB6937 Posted April 18 Share Posted April 18 On 1/5/2024 at 8:37 PM, DavidB6937 said: I'm not one to go too personal on here but as I'm not really doing myself any favours by keeping all this shit to myself, it might help to just type it out here. We have 2 daughters (8 and 5) and a son (just over 2) and he's been pretty slow with the walking and the talking etc. To be honest, we half figured that as the third kid he was just so spoilt by his sisters and looked after that he almost didn't need to bother. But it got to the point where the doctors just wanted to check it wasn't any familiar things that might be causing the lack of development. Ended up not being anything that they had on the radar but something far worse and rarer. He's been diagnosed with MPS 2 (Mucopolysaccharidosis type II😞 https://medlineplus.gov/genetics/condition/mucopolysaccharidosis-type-ii/ Now I'd never heard of it. Neither had the doctor. No one I've talked to has ever heard of it either. Internet stats give it as "approximately 1 in 100,000 to 1 in 170,000 males. What I'm really struggling with is just how open ended it all is. Not that I'd ever want him to have some deadly life threatening disease and have no hope at all. It's just that this is one of those "well this and this and this could happen or it might not" and it's basically going to be a waiting game for the rest of his and our lives. At the most severe, he could have 10-20 years tops and potentially less. If it's not as severe he could live for far longer but might not walk or talk. Probably stop growing. Generally lack development. So at the moment he's having weekly visits to Great Ormond Street for baseline tests (heart, brain etc) as well as weekly enzyme infusions which won't stop anything but will apparently "improve" the signs/symptoms. Those weekly infusions will have to happen forever, but can be done at home eventually. There was a clinical trial we were hoping to get on in America but that seems to have closed so we're waiting to see if it starts again elsewhere. So no real choice but to just carry on. My head has been all over the place since finding out. I don't deal well with open ended things as it is, but for something this significant I'm just pretty fucked if I'm honest. And I feel selfish even writing this. I wish the clinical trial was open still as I would've moved out there in a heartbeat with him. So yeah. Now Christmas and all the happy shit is over, it's all focused on this now. I don't know what to think or feel or anything. Sorry for the complete babble. I'm just lost really. Sorry to be one of those self-quoting wankers but it's easier to reference back. So we've been through the Great Ormond Street part of the treatment and now getting the weekly treatment at home for him which he's far happier with. We've recently been to a intro meeting at a local children's hospice, and while their main focus is always end of life type stuff, they offer a lot of support beyond that too so it was really nice just to see what's potentially available to us - sibling days and things like that. To be honest it's just a relief to have someone to talk to. And I asked to be referred for some counselling type sessions which I'll be starting next week. I just want to be in a good position to help as much as I can and support my family and it's tough finding the time to put yourself first in these situations and look at your own shit, but I know if I don't then I won't be of any use to anyone eventually. Anyway not sure why I'm rambling but sometimes it's just good to get stuff out. Quote Link to comment Share on other sites More sharing options...
deathrey Posted April 18 Share Posted April 18 I can only imagine how difficult this is for you all, especially for you and his mum. Doing counselling is a really good idea, it's important to have somewhere to channel all your feelings and no doubt, you will be experiencing a whole host of them on this journey. How are your daughters coping with it all? I imagine the eldest is fairly aware of everything? Glad to hear the treatment has switched to being at home and your son is more comfortable.   Quote Link to comment Share on other sites More sharing options...
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