feeling abit down not copping v well

[trace2]

at tired chloes still on 24 hour care, we have aapena montior now but i still carnt sleep when i do ds with AS is awake! dh dropping of to sleep all the time its anoying me when its me whats up( but he is depressed) so he as an excuse, him and ds bickers all day i think i carnt put up with it any more know i know how presures make you split up

Trace2

Couldn't leave this without an answer!

Brioche
xxx

Big (((((((HUGS))))))) from me too. Sorry things are rubbish at the moment. I'm always at my worst when I'm tired and not sleeping well. Hope things look better soon.

WMxx

you must be so tired. do you have to stay awake or will the monitor warn you if there is a problem? is it worry that is keeping you awake? try to give yourself as many opportunities to relax as you can. probably sounds impossible if ds needs a lot of attention too, but i hope you can find something to help you.

if you have to be awake, it would be good if you could have a rota for dh so that you both get a chance to sleep. even if he is depressed, it's important that you are not wearing yourself out. sorry if i'm just stating the obvious. good luck.

trace2 sorry that you are having such a hard time

We use an apnea monitor for ds,more for our peace of mind as he had neonatal seizures with apneas. Do you trust the thing? Have you let it go off a few times so you feel sure you hear it?

sorry for moaning i know its cos am tired iv slept in this morning tbh i feel worse for it, but my moods better! yes we try to work it out between me and dh but as many of you know its the mothers who seen not be able to sleep. yes we can here the monitor and they said i should sleep now we got it but it dont pick up her episodes and i fell asleep other week to find she ws in one and i felt so guilty knowing she was one her own when she needed me.

we get a few hours a week respite but shes not been over christmas at all, maybe thats why am so tired. but when she does dh wants to spend it with me when all i want to do is sleep or clean the things i dont get done.

thank you all as always you are always here for me.

Just seen this Trace, glad you are feeling better today. you've hard a difficult time and Christmas and all that goes with it just adds to it. Hopefully things will settle once the new year is in.

You are right I think, it is us Mums who are permanently on high alert, whether it's our 'turn' or not! Don't beat yourself up about sleeping and missing an episode - it was your body telling you that you must sleep. We can't run on empty forever. Give yourself a break, fuck leave the cleaning and rest up. Its bad luck to clean and do washing over new year anyway . And that's true honest, not an old wives tale at all !

Tclanger he is good really its me i hate to say this but i dont trust him even though hes never given me cause i know he may drop to sleep if chloes does and shes as stopped breathing while shes wide awake and playing it may only be a second or few breathes but we never know if she wont start breathing as they have no idea why it happens

feelingbetter thank you as always you make me laugh, but i think it is an old wifes tale hows ds?

Erm, bit difficult to say really. Brilliant in one way - vigabatrin had brought the IS down to 2 clusters a day and there have been none since Christmas Eve . He is back to his old smiley self but very floppy. Making progress every day though, quite unbelievable how quickly he's recovering. He's even started trying to weight bear again - not really succeeding coz his head control is crap now, but he's trying .
BUT (there's always one) he has started to have clusters of a new type now, just over the last 2 days. Very different to his IS, they seem more like drop attacks (not sure how I can tell that as he can only lie on his back!) but I feel that if he was standing or sitting, he would fall over. Its like a very quick loss of all muscle tone and its over in a blink. He's not at all bothered by them, fairly certain he doesn't even notice them TBH. Am trying to catch them on video again for neuro who we see next week. I'm not too worried as he's not bothered and he is coming down with a snivvle too (sneezed carrot all over me today) and as usual, he is eating well.
But its like you sort one problem, dare to relax a bit, then another one comes along. Grrr! Not complaining too loudly tho, he is a joy at the moment, its lovely to have him back. If only I could get him to sleep at night............

sorry didnt answer went of for some air!!

chloe as drop attcks ans yes she just falls and over within seconds you need to tell the neuro though as they changed

Trace

Can you email me on TTR? I might be able to offer sympathies a bit more on there (in a similar sit in that I have 2 sn kids, abeit no apnoea monitor thank God, 24 hour care thogh and a tired DH with severe epression)

Dh is around tho so best not blab too much on MN. Already ahd one blow up today (well misnight) about his attitude

thank you will do

oh, feeling better, good to hear your wee boy is back to his old self. all the best to you all for the new year.

Hi trace2 I am a foster carer with 2 children with sn the eldest currently has pneumonia and I am sat outside his room fiddling on the computer and somehow found mumsnet so joined it. Hope your LO is ok and I am thinking about all of your family I know how it all puts extra strain on relationships as if things aren't difficult enough to contend with. We are waiting for our son to be well enough to have a mickey button fitted and am so worried about him coping with the proceedure. God Bless, keep your chin up and get social services to put some support in so you can get some rest. I know what you mean about DH, it is allways me that hears seizures through the night and am always first on the scene, but he does his best. Do you have a Parent Partnership where you are who can help get you some support? Wish you a peaceful and most of all healthy New Year xxx

Awww thankd RR that is lovely to hear.
Trace I really do wish we lived nearer - I am the same (I'm sure all mothers here will agree) that tho our partners are generally lovely and great, it is us who take responsibility for said LO. I am a self confessed control freak. DP is Ace, but in my mind, if I do something wrong then I'll blame me - I'll live with it, knowing I did did the best I could. If he did something wrong, I'm sure I would blame him - so I know where you are coming from. DP is brill, love him, he loves DS, can't fault him at all - except he's not me (not that I'm ace), but he's not with him all day, every day, like I am.
You could do with a brew (or G&T)
Clarrisomo - I'm fairly sure I do live near you. I hope you are OK . I may get all AIBU and say 'I heart you' but can't quite bring myself to!!!!! I love AIBU BTW
(just in case anyone sneaks over here!), and I'm looking forward to meeting you, if you feel OK about it. I really hope you are OK. I'll even buy you and the boy lunch, you know! That's if you make it over my way - else it's coffee and cake, no more!! If you make me drive over to the other side. Eeeeeeek!

Sorry Clarissimo

'S alright FeelingABit. Blow up was well sorted out actually, and has done us masses of good- DH very calm today despite DS1 being decidedly NOT lol!

welcome thebellsthebells to mumsnet and the sn borad as you can see they aregreat on here and thank you for your advice hope your dfs is ok soon and gets over the pneumonia!! dd as a mickey button so if you need advice theres a few on here whocan give it.

feelingbetter so glad ds is alittle better it would be nice if all his sezures stopped

Clarissimo thank you for your advice yesterday iv tried not to come on here today but it didnt work. i need mumsnet so much more now