taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

Bugger thought I wrote a reply, but was wrestling struggling with Al at the time lol.
Congratulations monsters how are your other 2 ds's
Hello everyone else how is everyone?

The other 2 are not too bad thanks. Eldest absolutely loves him. The moment he saw him he patted babys head and said I 'lubs him take him home'
youngest isnt so keen yet lol.

Ds1 has startes to be refluxy again. Ds3 has to go back to hospital as mw checked his bilirubin levels and they were high so has to have thrm checked again.
how is everyone?

DGD congratulations and ouch I remember it well, last homegrown
10lb 2oz

Well done you did very well! When will you be home?

Just got back from break and the eldest 3 needed tarting up to go to a ball
What a palaver!!

Hopefully get back tomorrow.

I came back on Wednesday.
is that what you meant sneeze?
Wow 10lb!
Tbf baby doesnt look 9lb5 as hes long.

Aw hope you all have a good time!

Aw 2 old hope they had a great time!
And lovely reaction from ds1 maybe ds2 too little to understand I know al wouldn't know what to do if he was presented with a baby!
I think el was all for the baby when he was still bump, but now he's here I'm not so sure lol, aw broody

Hi all hope you are all well and "surviving" the holidays. Our 2 are now totally bored and fed up (what crap parents they have got)

DGD hope you are alright I remember in the long and distant past having 3 under 4 it was hard. Please take care of your self.
Just let us know if you are OK evenif it is a big fat raspberry x

love to all xx

The new layout meant I lost the thread. How is everyone

Thought I had better write something before we vanish without trace!!!!

Like me I expect you are all busy. Today all back where they should be . Went shopping and cannot believe this bought 11 Christmas presents (more )

Hope this finds you all well!

DGD hope you are coping with my 3 DGGS's love to them all and look after yourself (stern face)

xx to all

Must dash but hope everyone well, crazy busy here!
All well xxx

All is well here. Was ds1 the 4th birthday tge other day.
how is everyone?

Ds has had his 1st appt for asd. Hes having the griffths test done. Hes now 17kg hes doing ok with eating. 1 meal a day is better than nothing!

Hi all
You be pleased to hear I have not vanished under a massive pile of nappies and stinking colostomy bags .

Life here busy and blissfully boring long may it last. However appointments starting again so journeys to Nottingham, Manchester. Cambridge and London imminent.

DGD well done on DGGS's weight and eating you are doing well XX Do you know I think many of us are ASD I know I am very odd and all my friends are too How are your other DS's (my DGGS's XX)

Am off now sleep well all you scallywags. XXX

Where is everyone? ? Think I migjt start thread in kids health..

Sorry not been here for a while. Just plodding on as usual. House is finally done re building work, and is a bit decorated but still needs organising.
El is doing well, back at school and gathering his fan club of mostly girls who all fight over who's going to sit next to him at lunch lol!
Just trying to get appointments sorted for him, but not having much luck. Why does no one ever ring you back!

Al is a little sweety most of the time, he turns into a monster when el comes home from school, he's been suffering with bad eczema which is disturbing his sleep.
Hope everyone is well. Xx

Nice to hear from you giddy.
Aww bless el! Thats really good hes settling in well

ds2 has bad eczema we use hydrocortisone steriod cream aveeno and hydrobase. You can buy aveeno from supermarkets its brilliant

ds1 has scopes end of month. Hes bleeding on the inside again. Hes under paed for autism and the incontinence nurses now send him nappies out as he doesn't understand when hes done a poo. He could and has sat there most of the day in a shitty nappy.

Baby slept through until 7am this morning from 10.30 last night! ! Yay. Hes 9weeks.

hows everyone else?

Sorry everybody life totally maniacal of late!!!
Cambridge
Nottingham
Great Ormond Street
Manchester
Why oh why do I live 2 minutes from the East Coast.

DGD glad you are OK I bet you are busy. So pleased your LO is sleeping well you deserve it, sorry for DGGS 2 eczema its awful and I loathe using steroids on young skins but what else can you do? Have you only just got NHS nappies?

Giddy glad your building works are finished, was it just a bathroom or did you build another downstairs room. I am getting old and can't remember a thing

My 2 are in respite so we are taking the others out tomorrow.

Love to all the scallywags XXX

Hi everyone, sorry long time since I last posted. Hope your all ok? Quick update from us things are going ok at the moment. We are now on the waiting list for a peg hopefully soon as the nj tube keeps blocking and is driving me mad! I'm having to use carbonated water morning and night to clear it! Ds2 has also developed eczema which dosen't surprise me as ds1 has it too but much milder than ds2. So far we have tried oilatum and ebidurm but he is still having flare ups but will look out for aveeno. Ilovemonster what aveeno products do you get?

In all we had the 4th bedroom wall knocked down to make room for the lift, the bathroom wall moved outwards to what was the forth bedroom making extra room for the wet room bathroom. Lift fitted from what was the dining room, but now the play room to. The old forth bedroom. Then a downstairs extention build to make another dining room and level access.
Then we had the hoists fitted in elli's bedroom and the bathroom.
And outside we had the patron decked over and a ramp formed down the side of the house.
And we now have a WAV so El (in theory) can sit in his wheelchair, in practice he hates it and prefers to go in his car seat.
And we've decorated the hall, stairs and landing playroom, extention and Elliot's bedroom, still not all back together as we have to find a place for the stuff that was in the fourth bedroom which was a bit of a junk room lol.
Will write more later have to dash for kids bedtime

Ahh granny I hate the children's hospital here in Manchester! Gastric there is shit.
Yep we've only just got nhs nappies for him which are adult tena nappies in xs.

got baby cooing over here

Lousia I buy the pumpy aveeno bottle

I've been to gp to ask for the coil she was like have you started having sex x10000000 lol.

Giddy did it get really messy and dusty? Hows your mum??

Sorry didn't make it back, mums fine, she has a cold and is moaning about that lol
Love the baby coos, how's the boys?
We have the green aveeno wash and moisturiser on prescription as they can get expensive.
The steroid cream has worked in that it's taken all the soreness away, he was scratching until he was bleeding, so had no choice really, we've stopped bathing every night too, I think all this has helped, I can still see him flaring up very quickly tho :(

The building did get messy towards the end the garden is still unorganised and over grown, but that will have to wait for spring now.

Boys are not too bad thanks. As winter approaches they are starting to get ill. Ds2 has problems with his chest and was really bad yesterday just kept getting really breathless. Hes got a horrible harsh cough but luckily hes at the hosp for his skull so is seeing paed so will get him to have a listen today which reminds me red book!

Ds1 autism seems to be getting worse as when we are out shopping hes now covering his ears and saying it hurts.

The baby is amazing. I really didnt think id bond so well with him as the pregnancy wasnt planned but im in love with him just like I was with the others. Hes starting to giggle now too which is cute.

Ahh sneeze you have the woman flu lol.

Hows el and al now? Poor lil man hope the eczema stays ok for him its horrible.

How are you?

Glad you are all not too bad. Life here remains hectic (what else can I expect with my rabble

  Giddy I now shudder at the thought of building work but I can assure you it is worth it in the end whenever that maybe. Hope EL and Al are OK XX 

  DGD so glad you are enjoying your little boys despite their problems .                                                                                                Am waiting for the 3 eldest to start coughing and wheezing. Jay has the constitution of a horse (thanks Residential Care) and Annabel having weekly infusions is fairly good. Xed fingers. Winter is not a good time for all our LO's

Take care all of you!!

My two are struck down with shots and coughs Al is always clingy on a Monday, and turns from being angelic to a horror when El comes home from school. Hope it's just a phase and it wil pass.
What have they said about ds2 scull?

His appointment was fucking cancelled and no one told me. No letter or phone call! Took thr piss as I had 3 dc by myself and 2of them where screaming as we were getting ready as theu were asleep! Wasnt very impressed. So hes got the appointment next week but ds1 has his scopes next week too.