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 beforeĀ 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. Ā 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.Ā 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.Ā 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?Ā Glad to hear the treatment has switched to being at home and your son is more comfortable.Ā Ā Ā Quote Link to comment Share on other sites More sharing options...
Members SuperBacon Posted May 6 Members Share Posted May 6 11yo at the park with friends playing football. It starts pissing it down. Asks if they can go to friends. I suggest "Why don't you go to your house instead?" (The house literally backs on to the park and I live 10 seconds away)Ā They say no it's fine and friends mum will pick them up. "Cool, you waiting in the house?" "No" "Where are you?" "In the park under a tree" "Be better if you waited in the house, or come to mine" "Why?" "Because its belting it down" "We're covered. We're under a tree" "Be even more covered in the house" "Lol"Ā I give up. Oh and eldest has joined a band, which is fun. Really good for their confidence I feel. Quote Link to comment Share on other sites More sharing options...
Members SuperBacon Posted May 13 Members Share Posted May 13 On 5/6/2024 at 1:21 PM, SuperBacon said: Oh and eldest has joined a band, which is fun. Really good for their confidence I feel. Auditioned last Thursday for our local festival, and found out today they're on the bill!!! TIME TO OPEN UP THAT PIT LETS GOOOOOOOOOOO!Ā Proud doesn't accurately sum it up. Quote Link to comment Share on other sites More sharing options...
Paid Members Surf Digby Posted May 19 Paid Members Share Posted May 19 "Daaaaaad!" I wearily opened my eyes, having been out late last night, and shuffled across the landing to the bathroom. There was my son, trousers round his ankles, poo smeared all over the floor from where he'd stood in it and then seemingly done a Torville & Dean routine. He looks at me and says, "I think I've got diabetes!" Quote Link to comment Share on other sites More sharing options...
Members SuperBacon Posted May 20 Members Share Posted May 20 11yo has just told me I have zero rizz and she is the Rizard Of Oz. I'm gutted. Quote Link to comment Share on other sites More sharing options...
DavidB6937 Posted May 20 Share Posted May 20 I have no idea what that means but I'm going to assume it's nothing to do with Rizzo from Grease. Quote Link to comment Share on other sites More sharing options...
Members SuperBacon Posted May 20 Members Share Posted May 20 Just now, DavidB6937 said: I have no idea what that means but I'm going to assume it's nothing to do with Rizzo from Grease. You too clearly have zero rizz. Quote Link to comment Share on other sites More sharing options...
DavidB6937 Posted May 20 Share Posted May 20 Just now, SuperBacon said: You too clearly have zero rizz. Do I WANT rizz? That's the question. The fact my phone keeps changing it to pizza is confusing me. Quote Link to comment Share on other sites More sharing options...
Paid Members Surf Digby Posted May 20 Paid Members Share Posted May 20 11 minutes ago, DavidB6937 said: I have no idea what that means but I'm going to assume it's nothing to do with Rizzo from Grease. Well, there's worse things you could do. Quote Link to comment Share on other sites More sharing options...
Donald J Trump Posted May 20 Share Posted May 20 22 minutes ago, SuperBacon said: 11yo has just told me I have zero rizz and she is the Rizard Of Oz. I'm gutted. I've said it before, but this is why "Generation Skibidi" are already outperforming Gen Z.Ā Quote Link to comment Share on other sites More sharing options...
Members SuperBacon Posted May 20 Members Share Posted May 20 Just now, Donald J Trump said: I've said it before, but this is why "Generation Skibidi" are already outperforming Gen Z.Ā Skibidy toilet. Quote Link to comment Share on other sites More sharing options...
deathrey Posted May 20 Share Posted May 20 We all post on the UKFF, it's a rizz free zoneĀ Quote Link to comment Share on other sites More sharing options...
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