Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Hi all
Glad you all and yours seem ok. Pleased you like Eli's 1-1 it is very difficult if you do not see eye to eye.

Shame about the trike but feel it would be a waste of money as if we had to assemble it every time to go out would we bother??

Regarding Jay and a Baclofen Pump the neuro felt it was not a good option as Jay has a cochlear implant and a jej tube he felt the risk of infection too great.

Well done oldsneeze re buddy buttons what a good Granny you are (much better than me)

DGD I hope you have stopped spring cleaning (what spring )
It is freezing here central heating on fire lit
XXX

Glad the buttons are looking better. Bet you feel well proud

Haven't done too much as I dont feel well (chest and kidneys) will go to hospital triage to have urine checked and they check chest too unless im in tonight with these tightenings that are lasting over minute and bringing tears to the eyes

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Isitme. Jess was very freaked by the braxton hicks...scared of labour, and v uncomfortable. It helped with a warm bath and lying down
anything to get out of the housework

20ld you can have half the buttons when i've sewn on 15 tiny fiddly poppers! Just dont tell annabel they are blue!

OT arrived to trial toilet seats for el...he cried. physio and a student turned up for a mini session they forgot to phone about..el cried even louder. rep turned up with a van full of toilets...we all needed ear defenders! Eli just hates people arriving in his home especially when he is tired and post viral. He was fine after that and grinned at them all when they left

Oh, Brixton hicks are horrible, mine were very regular yuck! Never again

El has taken to handing you the end of his tube when you say are you hungry? Or present him with a syringe lol ! We gave him some prawn crackers to mess around with last night and some made it to the mouth I think we need to start having meals together, the reason we haven't before is that el gags at the sight of food, (not just his own) which I think has got better lately. The food aversion is awful, maybe if he played with it and nothing was expected of him he would like to try a bit more? Who knows
What to do on this lovely sunny day?

I dont fit I our bath lol its a small narrow bath. The shower we have is a box shower thing and the door doesnt open enough bump gets one side and arse gets other!

Aww wow that's brilliant! I think that is the best thing to do, eat as a family and make him a plate up but leave in front of him rather than fees him let him be and he will hopefullyeat. Thats what we do with ds. Make him a plate and let him be. We will ask him if he wants anything to eat and offer him ours. If he says no then fine. If he wants it brilliant and he gets praised.

Ive got car sear out and had a serious chat with dh about labour and looking after ds and we've got crib sorted and the bath changer unit is going up too

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What is everyone else doing? X

we've been over at muns today as dh laid the kitchen floor it looks rather nice

he's doing a car boot sale tomorrow so lookd like it will be a morning in the garden for us.
just watching chelsea flower show id love to have a pretty garden. I can see a trampoline going up soon
ds swing takes up a good chunk already

alex is refusing to go to sleep right now big one out like a light
might go get some tea I'm starving

Isitme!! It's getting real now. Little baby Alex is looking less like winston Churchill now and getting more cute baby. All we need now is him to stop yowling so much! I think he's bored and wants to play but his puny little arms do nothing but bop him in the face

Need to cook cheese omelette and spinach to put down tube. Sounds nice but will probably smell vile!

Aww a trampoline sounds brilliant. Sadly we dont have a garden here (there is at mums but vicious dog is there and we stick kids in front garden)
I was watching the garden show to. Think its amazing what they do!!
Think dh is nesting lol. Hes done loads this morning :)

Omelette and spinach sounds very nice x

I was watc

Sorry Chaps computer blew? up and in a fit of fury threw it across the room BTW it WAS a lap top 8+ years old so have blown both Jay and Annabels's DLA on a new one Don't let the DWP know,
Then bloody food processer gave up the ghost and with my size family as like all old farts I cook everything from scratch.
AND as I am going to Nottingham with Jay I needed yes really needed a small radio to use when I can't sleep, so all in all I am feeling a bit guilty, and penniless OF looks in pain

Giddy love the thought of a trampoline but like DGD garden is minute (5 tomato plants fills it) due to 2 extensions for (Wow now Jay and Annabel.

Glad blended diet is going well. Spoke to dietician and she thinks it is fantastic but felt not suitable for my little ratbags.

Wow oldsneeze a new kitchen floor lucky you mind you my son-in-law is fab but lives too far away

DGD I hope you are not doing too much Granny Midwife speaking!! I am sure DH will cope with my DGGS whilst you are doing "the business*

Take care hope you are not bored to death
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Granny im sure somewhere or other we have all 'borrowed' a bit of dc dla. Dont worry

And I want dh there while doing the dirty work! He can stay with me and they keep you in 24 hours here so ive told him about ds feeds and what not.

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not having a good night with the elibear second time hes been up crying no idea why maube over tired the sun takes it oit of him little alex asleep after his midnight snack
will watch some tv and hopefully go to sleep.
2old I have to listen to radio 4 if my brain wont switch off on a night it drives dh mad says I'm old before my time I have to remind him hes the decrepit 40 year old who cant take his exercise (he plays hockey once a week and comes home with at least one swollen joint)
right will attempt sleep again

Ds wakes up more if he watches telly at night. Did try that a few times, in the end he was just waking to watcj telly!

It was warm yesterday but we didn't do much (what cqn I do lol) went shopping and come home. Ds still didnt sleep til late as he was on the ipad!

Just had a power nap. Wow I needed it. I was a bitch before that. Mum watchee ds while he was on the pump

How is he now?
How is everyone? X

Giddy ! have listened to Radio 4 before I was 40. It kept me in touch with the world when working nights (is this why we have atrocious sleep problems ) At weekends I listen to radio 5 live a lot of controversial topics discussed. I wear ear 'phones to stop OF moaning
My OF used to go cycling X 3/week until he fell off and smashed both clavicles NOT FUNNY had to do everything. We were having extension so Jay's room out of action no ceiling hoist so builders had to help me lift him.

DGD at present a power nap would be appreciated joking you need it far more than me but am glad you are resting and you have my permission to be bitchy

think your entitled to be bitchy when you are lumping around another being 24/7 we're all ok here.
I really like radio 4 most of the time there is a children's programme on around 3 am which is disappointing when you need to listen to something but not that
I will give five live a go I thought it was all sports (hate football) dh has just come in from playing hockey he scored a goal so it's made his night
physio tomorrow for the el bean hopefully will get his new walker ordered

not so good news about blended diet in school need to talk to the gastronomy nurse inthe morning. Basically can't have his food at lunch time as the manufacturer s of the freka peg he has doesnt recommend it but he should be having a mickey button before school which is ok with bd but dont know if they would not do it anyway in which case looking at going in everyday to feed him which I think would be too upsetting for him when I leave again and would it ruin his school days waiting/anticipating me going in at lunch. either way he needs to be fed and he will only vomit formula what to do?
right I'm off to bed while tje young uns are settled

sorry bad punctuation and grammar im on my phone so should ne excused

Hmm. Could you write them a very formal letter to say that you've had no problems with it and maybe give instructions on how to do it properly?

The only thing I listen to on radio is captial fm for musiclol

HHave been ill with kidneys. Getting back side up to hosp once ds goew nursery. Keep getting these bloody tightenings so hopefully they will check everything ok. Have been leaking a bit of fluid? tmi I know would be if theu said it was pee lol
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Where are you all, lying around relaxing ?
As it is half term time is at a premium.
Went to Ben, Ellen and Lotties' day services, they had a garden day and I bought some lovely plants but was told how polite and kind they were (big proud Mum moment preen)

DGS Hope it is not amniotic fluid. DIL did this throughout pregnancy DGD was fine.

Hope you are all OK

Sleep well ALL of you
XX

Im here
I know ive got a kidney infection but as im on antibiotics it doesn't show on a normal dipstick.

Have to wait for results but im in loads of pain and its jist getting worse.

They said its most likely normal pregnancy discharge.

Absolutely knackered.

Aww bless. Thats nice to hear x

Just want to let everyone know about this offer

Vistaprint.co.uk/31diary

Photo mugs for 99p. Got dh one from ds for fathers day. £5 all together plus postage

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I'm here too. Been so busy past few days, need a rest but in for an even busier week. RDA with El tomorrow afternoon, driving god knows where to get an exercise machine from ebay for my fat arse general fitness levels. Took elli to cranial saccral therapy saturday to try to get on top of his anxiety. He liked it but time will tell. Saw my dear sis today who came all the way from norfolk to buy a special puppy as her beloved husky died and DSIS is devoted to her dogs....all (now) 5 of them! She was gorgeous and cute..the pup not DSIS. Gardening while the sun is almost shining to get it up to scratch. Off to Brainwave on Wednesday. Sewing taking a back seat while the weather is fine but it will be done eventually. Elliot has been approved for a Kidwalk, a seahorse toilet chair, has a new wheelchair and we have just ordered a special tomato soft touch sitter! The NHS has taken a hammering on his behalf. Hope you are all well. isitme, take it easy from here on in, it only gets harder!

Wow you have been busy. And still are!

Absolutely knackered!!
Ds cant take the heat. Hes turned all nasty! Hay fever playing up too.
I can't take it either but it's nice.

How is everyone?

Really want to take ds to park but can't make it that far lol.
Need to get out to get him some summer clothes as he's currently wearing last years ( fit him fine but want its 3 outfits that hes got that fit)
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Hellloooooooooo
Anybody there??
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Yes I am here Having a busy week with all 5. Nothing drastic but appts full on,
Hope you are all well.
DGD how are you? Resting I hope I suspect not.
Giddypants how are you managing?
Oldsneeze is OF still under the patio?
Weather here on the coast is frigging freezing.
As you may have guessed life is a little flat here so I am a boring old fart

Sleep well XX

Hi we are here and back. You never see me if the weather is nice as I'm in my garden. Giddy and DH went for a day out yesterday with the kiddoes so hope they had a lovely time. Brainwave was excellent as usual. Sad in a way coming to terms with how crappy CP makes life so difficult for elbear and his family, but they are so informative and optimistic. I think it's school looming and brainwave physio summed up my feelings...if only we had a couple more years to work exclusively on the physical side while his brain is still plastic but he needs other children so much and loves being with them. After being so involved in his physio all this time I'm just scared all our hard work won't be continued. Guess I am just going to have to trust other people.

Thought the weather in sunny Norfolk was hot? It's always been like that if we go to the east coast for the day....swelter in traffic there, get there and it's bloody freezing. Don't talk to me about mablethorpe! OF driving me mad still. Am a really interested in what he did as a boy 100 years ago? Why do old men people rabbit on about the past? Us girls live in the now! Hope all littluns are well xx

I'm still here too, just waiting for little one to wake up which he is about to so will have to be brief on out way out again today making the most of the good weather, going to have a look at some art at the Yorkshire sculpture park
Ok I'm being grizzled at so best go love to all x