how to get things done with a child needing help

[Alamaya]

Hi all,

Im struggling and im hoping someone can guide me.

We have a healthy 21 month old.

We have a poorly 17 week old. He has seizures and is tube fed through a NG. He also has severe reflux and has no head control.

Heres the thing, we cant cope. My mums doing a bag of washing a week but its not enough and its piling up everywhere theres toys all over the living room. Its all falling apart.

My toddler now wont sleep in her cot since we were in hospital so much with our son so shes now in our bed, she wont sleep on her own so one of us has to go to bed at 830 with her. Because of this one of us sleeps downstairs with our son where we have to feed three hourly in the night taking 30min plus each feed as we have to bottle then tube the remaining.

On top of these are the consultant appointments, physio appointments, salt appointments, hv appointments for weight monitoring (hes malnourished), gps for medicine checks, vaccinations ......

How the hell does everyone get things done, im struggling to even get all the syringes, tubes, bottles washed and steralised before the next time they are used and i go back to work in 4 weeks!! :(

Can you contact homestart? Your HV should be able to give you the number.

Hi alamaya and welcome to the board. Sorry you are having to deal with this and that you are struggling. It does sound difficult.

Do you have a family support worker? If not go to your nearest children's centre and refer yourself for family support. They can give advice, help with benefits and maybe able to access some funding for you to get some help.

Try to be kind to yourself and dont worry too much about the mess. We have a laundry bag in each bedroom and I try to do a load of washing everyday to keep on top of it.

Is there anyway you can defer your return to work to give yourself some more breathing space?

Good luck

Hi thanks all,
ive applied with a charity that deals with feeding issues for a support worker for a few hours a week as they are trained to tube feed. However not heard back yet.

We applied for dla the other day and as soon as that comes back we can attempt carers allowance. Sadly i have to go back then as my salary drops down on that month anyway to just SMP so no choice. Hubby who works part time is having to quit his job as our childcare arrangements for toddler have had to be cancelled due to finances and the fact our son could not be cared for elsewhere.

The worst thing is even when i do get 10mins of peace i dont even have the strength to get up. :(.

Sorry for moaning

Dont worry about moaning, we all come on here for a moan from time to time.

The nice thing about this board is that we all have experience of children with SN's so we know what its like and dont judge.

Moan away, you need to let it out