Original Thread: http://ift.tt/2s3A0XK thought it was easier to start a new thread rather than replying to individual comments, as I'll be repeating things.My husbands condition: He has a urethral stricture, which means his urethra has a lump of scar tissue that swells and then collapses so he can't pass urine. As a result he has a catheter through his abdomen. He has night bags he has to be attached to for 8 hours, he can't move once he's attached to that so I have to do any or all night wakings - my daughter still wakes at least once a night but has been known to be up to 6 times due to her chest problems which cause a nighttime cough which sometimes wakes her up. Although he works (up to 20 hours a week), he has a lot of adjustments, he can't walk far and often has to take time off due to stoma (the sight the catheter enters his body in his abdomen) infections and repeated UTI infections. He can't pick her up because she doesn't understand not to kick so he's often ended up with stoma infections as she's kicked him, this also means he can't have her in bed for any length of time because she falls asleep or just kicks off and ends up kicking him. He can't really sit on the floor as he gets tangled in the tubes and wires, he does try when he is having a good day though but I can see he struggles to play with her or follow her round the flat. He is a great cook on his good days, and does make me cups of tea while I'm sending emails and making phonecalls.He doesn't need care as such, but he does need help showering, hooking bags up and reminders to take painkillers etc. He also has a lot of appointments, which he sometimes refuses to arrange transport to get to and from them (neither of us drive although I'm hoping to learn in the next 6 months), he also regularly needs the catheter changing, and these appointments can't always be while our daughters at Nursery, so I've been taught to do this myself, but it's quite painful for him and he hates it. He's in denial about the whole situation, hates admitting he needs help from anyone but me plus his family aren't accepting of his condition so it's mostly down to me anyway.He's waiting for an operation which should solve the stricture and therefore correct all his problems, but the NHS keep either forgetting about him or wanting to try different treatment options (probably because they're cheaper, but they're only temporary fixes and it only delays the inevitable). As it stands right now he'll be having his operation in Sept 2019 (just when our daughter starts school) but it could be delayed further - the NHS is great, but so underfunded :(As for my daughter of course I would never give her up. I love her with all my heart, but it's such hard work. She currently has referrals into: Audiology (hearing), Ophthalmology (eyes), A Childrens Orthopedist (hips), a physio (hips), a Speech and Language Therapist (Speech) and a Pediatrician (who's running test to see if there's a deeper cause to all her problems). I spend 50% of my time in hospitals and with doctors as she has at least 2 appointments a week, and then I spend the rest of my time when not helping my husband sending emails and making phone calls about her.She will play on her own, but cannot be left alone really. She has a tenancy to fall due to her hip problems or possibly balance problems (related to her hips, eyes and ears) so although she plays independently she can't be left.They've said her hearing isn't causing the speech problems, as although she failed the hearing test she's borderline for passing it - so basically she can hear, but not absolutely everything and they thought it was the quieter sounds she struggled with.TV wise I do try and get her to watch educational stuff; Mr Tumble as he uses Makaton which I hope she'll pick up, Numberblocks for counting etc but I do also let her watch In The Night Garden, Peppa Pig, and Paw Patrol just because I don't want to overwhelm her. She says 3 words but never uses them in context so she says "Daddy" which is both me and my DH, "Baba" which is what she calls her favourite blanket and "Nana" which is both Banana and Nanny (what she calls my mum). She's also recently started saying "Gaga" which we think is the word she uses for Grandma (mother in law) and grandad (she has a grandad (father in law) and 2 great grandads she sees regularly).But I'll never give up on her. She's such a funny little girl. She loves dressing up, but she wears say a pirate eye patch with a princess dress and tiara. She's adorable and I love her for her.Help wise, the NHS pay for daughter to be in Nursery for 15 hours a week and we pay for another 15 hours on top because she really needs to be in for 30 hours. The Nursery are great, they've dealt with all the problems she has in children before, but have said they've never had a child with all the problems she has at the same time. She's not bad enough to need specialist care but there is another local Nursery that purely takes children with extra and special needs who are working with my daughters Nursery to make sure she gets the correct care and assistance. I also work, which saves my sanity a bit but also brings it's own problems, as I've had to find an understanding and flexible employer where I can drop everything and leave at a moments notice if my daughter has a fall at Nursery, as a result I only work 8 hours a week (1.5 days). We have limited family help - my mum has arthritis in her hip and ankle, my granddad is 84 so can't look after a toddler, my brother has his own life so can't regularly help. My mother in law would help but it's always on her terms, so I rearrange daughters Nursery days so she can look after her and she calls me after an hour or so to say she needs to go out and can't take my daughter with her, so I try to not use her. Father in law works overnight and long hours at that, so is sleeping in the day when we would need him. Sister in law is only 14 so can't really help due to school etc. Daughter isn't bad enough to get respite care, and DH wouldn't go.We are quite young ourselves really, I'm 25 and DH is 21. So it is a lot to take on. via /r/Parenting http://ift.tt/2ru4Rjl
No comments:
Post a Comment