Parenting advice for chronically ill toddler

[Terrible2mum]

Hello,

I’m looking for some advice from other parents or any childcare professionals reading. Giving a detailed background to help. My child is two and a year ago was diagnosed with a serious condition. The condition is life long - no cure only treatments. We spend a lot of time of time in hospital - weeks on end sometimes and over the past 6 months it’s been every 10/ 14 days we’ve needed to be admitted with multiple operations peppered in. They are an amazing tough little thing, but I’m aware how hard it is on them. Since the last operation things have calmed a little and we are home more which is fantastic. But somewhere along the way I’ve lost control and they are ruling the roost. I need to take back control, I know I feel guilt every day and overcompensate but in the long that will lot help my child. In hospital we use screen time to distract/ sooth. I don’t know how to curb them off it at home without full meltdowns each time. Do I just go cold turkey? Prior to diagnosis they’d never watched TV. I’m also letting them watch the TV when I need to tidy up/ cook etc. does anyone have any other tips for getting things done around the house?
Mealtimes have also become a battle, again they used to be a fantastic eater - we followed all the weaning books and they enjoyed a varied diet. It feels like they know if they have a meltdown ( about anything I will backdown - and I do!)
I know some of this the terrible two’s but I am worried, I want to bring up a happy well adjusted child who people like being around. Routine wise I try to keep it consistent- even in hospital - mealtimes and bedtimes and bedtime routine (bath, story etc). Any advice or has anyone experienced anything similar ?

My daughter doesn't require hospital treatment but does have health issues and it can be a balance.
For us the biggest impact is her sleep, there are times when she needs a lot of support overnight as she's in pain but then she gets used to the support and only sleeps with it but doesn't necessarily need it. Coping with it has been about recognising when she has passed the need for it and then being a bit firmer and encouraging independence. We pick a good day and we might have a couple of nights where she's asking for us but we tried bringing in new boundaries. For example we might have gone back to cuddling her in bed so as we step away we will sit next to her and but not get in bed with her.

We use more TV with bugs and illnesses and it does quite quickly become the norm so we have done cold turkey. Usually it's about 3 days to reset her expectations and then we can reintroduce it at a more reasonable level with fewer tantrums. We change what TV she was depending on how long she has the TV so if she's ill we try to stick to longer programmes like films, one it's easier to say no films and two we don't drive ourselves potty with having to listen to them tunes every 10 minutes!

We are stricter with some TV shows than others, paw patrol my daughter never ever has enough she will always want more so we don't let her have this very often. She's 4 now but at 2 we found things like Sarah and duck or JoJo and gran gran more calming and she was happier for them to be turned off with warning that this is the last episode. She now favours shows with people in like our family, my very first and my first on bbc. I think it's also about choosing a time for TV that's most beneficial for you, whilst making dinner is a time when we use it more and it also means there's more of a defined end point.
My daughter has never been a particularly good eater but has good periods and bad periods. Bad periods often coincides with when she has had poor health and it takes time for her to get her appetite back. There's some times a delay between a flare up and her not eating. She drops back to eating plain pasta, peas, chicken/chick peas and olive oil. We do a few days of her safe food, get her back being comfortable with eating and meal times and then try to introduce more variety and move her back to eating her more normal diet. Some times it's a few days sometimes a week or two as long as we have tackled the underlying issue.