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

[isitme1]

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

Those squares are supposed to be a poo symbol lol!

Lol.
Dh had been eyeing up some Nicholas deakins for a while but didn't think rhey were a good investment they are £70 managed to pick some up in sales for 30!

Just know foundations must be very good quality. More so than anything. Cowboy foundations are NOT good.

No idea about birthday! Nicholas deakins

Giddy I hear the sales of Ferrari are on the up-just a thought
Can't even show Annabel Movicol without emptying her bag!!
Life OK here still no luck on Jay's wheelchair can see us funding it ourselves AGAIN
Like you all the bugs have taken up residence at no 11.

DGD your son is a complete enigma, hesitate to give any thoughts except throw a strop.

Must go and feed the poor starving family, cottage pie ready

Hopefully back later.
XX

Mmmmm, cottage pie, I can never get the potato on top crispy?

I'm not buying him a car! Was thinking more along the lines of a t shirt!
Foundations will be done properly mum!

Hooray! There is poo! Perfectly normal poo! (Now how to carefully word my gleeful email to the dietician who didn't believe the feed was the problem? ) Also this feed smells much nicer. Both on the way in and on the way out.

DH is slightly freaked out by the G-tube pads. H has a little fleece sock thing over the end of the tube, and a fleece and toweling wrap thing round the clamp bit (because she lies on them both and they look uncomfortable without padding) and a pad round the site itself. All in clashing colours/patterns so she looks like she got caught up in an explosion in a sweatshop. DH very politely didn't say "WTAF is all that shit, you madwoman?" but his face said it for him.

Hooray for the poo! Its clear some feeds do not suit some children. Sadly some feeds never suit some children which is why proper food is often the answer, but one overlooked by dieticians.

Plenty of children are doing well on formula and it can be a life saver so I am not knocking it, but of to M&S for some grub to cook up and blend.....it was a Christmas gift card to the OF so no guilt about M&S

Don't buy salmon!

No salmon jess

Lol why not salmon apart from its smell lol.
Took kids to safari park yesterday.

Ds1 shit himself. He kept pretending to be asleep lol then he saw the deers and got happy called them his friends and was fine after that!

Lol, apart from the smell El has a white fish allergy but has been puking when he has salmon so maybe allergic?
We took El to a safari park about 2 years ago, he was very underwhelmed by the animals until we went through the monkey thing, dh was screaming At me to get them off, I was screaming at him cos they were pulling the cars to pieces, Elliot was wetting himself laughing! Dh eventually squirted them with the window washer lol

Did you go Knowsley? We went kfc before and got foodfor dinner dh showed a massive monkey a chip and then gave it him through tiny gap in window the monkey wouldn't move after and kept putting hands out for morr and kept looking at the kfc bag and raising its eyebrowslmao

Yes it was Knowsley, we'd been to brainwave at Warrington the previous day. So it wasn't too far to go.

The baboons were hilarious. Everyone in the car screaming for different reasons.

I feel all virally again! Those boys are just germ factories. Think I will just induce an alcohol induced coma and wake up in the spring when the germs might have died fat chance

Cooking for the blending again. More spag Bol and a chicken casserole. Going to try linseed bread and butter, feta and cream cheese, tomato, cucumber and lettuce, with plain Greek yoghurt, herbs and onion. Basically a cheese sandwich!

Just bought this pattern! thought it looked quite easy but looking at the instructions I may have over stretched

Oh wow. If you make a spare you know where I am

I'm struggling to make head nor tail of it so far! But if I get the hang of it there will be one winging its way to that new bubs!

Aww

Hope you are well and not too much fits, sicks and shits!!

Loved the quilt Giddy but I can't crochet but can do material quilting, very relaxing. When is Eli's neuro appointment can't be long now unless I have gone completely gaga (oldsneeze )

DGD hope you are all ok, How are you keeping resting I hope it is your long distance midwife speaking!!

r3dh3d so pleased about the poo (can't believe I am saying this) Re buddybuttons I bought mine from America @ £7 each and they had the cheek to charge import duty!! But a lovely lady has made Annabel some they are fab I am so grateful as I do not have time.

Things a bit busy here Jay has had some nasty seizures and Annabel refuses to sleep and amuses herself by knocking her feed stand over wherever it is put GRRRRRR

Have arranged to go away with Ben. Ellen and Lottie when the scallywags are in respite next. I am a gibbering wreck already ??

Rest? Never heard of it
ds2 has decided its good to keep me awake until 4am most nights! It upset me that much the other night I cried lol blamed it on hormones

Ive found another weird bit on ds2 head? It feels like half a pea of bone that moves on the back of his head. You can feel it but not see it??

Waiting on gastro to ring me back regarding ds1 pain in arms and mouth

When do you get your mini break granny?
X

Can I join? We're not tube feeding but DS4 is fed liquidised "solids" with a syringe and I'm looking for more ideas of what to give him. I know some of you tube feed your DC's with blended "normal food" so I was hoping to steal your ideas. He's only had soup and fruit so far. He's nearly 9 months and he has a cleft palate, hypotonia, development delay and ventriculomegaly.

Hello, and welcome Ellie! We do blended diet for my 5 year old through his tube, there is a very good Facebook group, blended diet uk which we have found enormously helpful. I also have an 11 month old so quite similar age to your lo. Mind you I'm not very imaginative when it comes to food for him.

2old thanks for reminding me we were supposed to see the neuro in February, but no appointment through as yet, I will have to chase that up. Where are you going for your little holiday.
Quilting is going to be my next project so I may need to pick your brains!

Hi Ellie. Second blended diet uk Facebook. When it comes to blending food you ideally need a high speed blender which cost £240 upwards! It can be done with a stick blender and an ordinary blender and a coffee grinder for the nuts and seeds but bit of a faff!

Does your LO need fattening up? If so extra fats, like coconut milk, cheese, oils.

Just optimising the diet? Seeds, fruits, and all sorts of tasty healthy things.

We basically look at fattening, low volume, high nutrition things and just shove it down the tube! You can really tailor to the child and to their tastes. Just start slowly and add as you go along. You can do gluten free or dairy free, low cal, high cal.....anything really as long as it tastes nice. Not really a problem with the tube but I do make things as nice as possible.

Welcome ellie!
Just a question have you considered a tube?
Tell me to shh if its not possible
I tried it and had some good recipes. Got them of gali but shes not been in for a while...

Hi everyone, can I join? Currently 24 hrs in on removing the NG tube my 15 month old has had since birth. He was born with stage 4 cancer and has been through all manner of horrific treatment. He's in remission now and very well so we're tackling this tube dependency. It sucks! My usually unstoppable little boy is lying listless on my lap and only drinking loads of water but refusing milk and spitting rather than swallowing all solids

Someone tell me a good news story, quick!!