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

[isitme1]

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

BRILLIANT must be the blended diet you are stars!!

Hope all are well, long day leaving here at 07.00 getting home at 20.00 to go to GOSH! Annabel was a star and I bought her an outfit for Christmas in Monsoon ££££££'s EEEK!

Sleep well if possible

Need to tell you about Elliot in his 'jiggly nativity' Wednesday afternoon dh took time off work, collected his mum and both my parents were there too. Everyone sat down, no one could see bugger all cos we're all short arses they wheeled el in in his little lamb costume, and instantly he started crying, so wheeled him out again! I plonked Al with mil and sat with him trading a book until was over, he really didn't like the shock of all the people there.
We had a chat and I told him that he has to do it again on Friday morning, and there will be people there, his 1-1 said she will walk at the side of him with her phone for him to focus on etc. and im said I will come to see him again, I wasn't planning on it, wanted to bake cake!
So just me and Al sat second row back so at least we could see!
They wheeled him in, with a bit of distraction he was fine! Sat all the way through the play, and even said baaaaaa (very quietly) on cue! But he said it, he was doing the actions to the songs and had a huge smile on his face all the way through so proud of him! Will post a picture when I can get them off the camera and blur the other kids faces!

Typical to have missed the little lambkin but so pleased he coped with a huge crowd of parents.

She didn't mention that the HT asked to speak to her and said ...... Too lazy to repeat it .... But posted with the heading **feel good alert!

Here

Awww that's made my morning! !
Bless him. Bet you was ans still are very proud! !

How did the appointment go granny? ?

Ds is rather constipated again :(
Despite daily meds and antibiotics!

X

How are you all? Daft question I expect like me you are staggering from this disaster to the next. If there is no disaster you wait nervously by the 'phone ?

Appt went fine at GOSH but bloods needed to be taken......we were 96 and number 64 was next thank goodness the immunology had a good dollop of common sense, in view of our time schedule said we could have it done at our local hospital. She is brilliant! Also immunologist felt Re investigating crohn's was a good idea!

DGD how about your DS swapping his constipation for Annabel's diarrhoea a couple of days a week

Oldsneeze so glad about Eli at school he just blows me away. Ellen and Lottie were so loved in mainstream by staff and pupils alike. Best thing we ever did!!

Sleep well you tinkers and mine....no school tomorrow no mad rush. XXXX

Granny you summed it up pretty well.
My phone is always with me!

Yes!! Lets swap!!
Atm hes complaining of back ache.
I am trying to get hard bits shifted but don't seem to be getting anywhere.

Tmi but it's like thick water atm which is either overflow or stool being melt down if thats possible? ? But no hard bit
And I know hosp wont do anything as hes well in himself.

How is everyone? ?
X

We are all OK here apart from a cold I've had about 6 weeks, keeps coming and going and driving me mad with snottiness. I am really living up to my name at the moment grrr.

And we've lost the ASHES . Baby boo climbs all over elibear and 'kisses' him....just a big dribbly open gob stuck on his face. El NOT impressed.

The school had a pantomime (outside actors) and el weed himself laughing at all the slapstick! Loved it!

He signs to poo but can get a but muddled with weeing. Might be the medication he is on, but we can't stop the med. hopefully he will improve.

Poor little DS1 isitme. His bowels are a trial and a mystery!

At least if all your appointments are out of the way 2old you can have a peaceful Christmas, if I dare say that.

Xxx

Got dietitian coming today.
Will see what she says..

What a bloody night ive had!
Dh was out
Ds1 wanted more food but couldn't make any more as ds2 was screaming for around 3hours!
He shut up briefly in between
I had a jar of honey spill on the floor (don't have a clue how) ds2 shit himself. Then ds2 be sick.
We've been at mums and all the kids that go there (nieces and nephew plus Lil bro) have a horrible virus cough. So now these 2 have it!!!!

Oh to top it off ds2 didn't settle properly until 4.
As he was sick again.
Absolutely knackered.
Haven't slept well for a few nights :(

Sorry to hear of your miseries.
Both scumbags in respite and as much as I love them must be honest I am looking forward to a night's sleep!

Haha automatically went to confused.com lol!

Sorry no idea about neocate

Apart from cards Christmas pretty much done and dusted - phew!

I hate Christmas still haven't got Christmas presents sorted ggrrrr!

Lol.
I asked for the confused.com bit to come off and they pulled the full post!

Giddy ive got ds1 a woddy doll thing from toy story and a colour kit, ds2 a new sitting chair thingy.
Just need to get Lil bro and 2 niece's and 1 nephew.

We don't do thr full on Christmas but the kids do get presents and we do full Christmas dinner.

Ive got an eye infection
Ds2 is ill. Again. Onantibiotics.

He won't drink bottle either or have it in a syringe.
Hes had around 15oz I think all day.

I was askin if anyone knew about decreasing water in neocate advance feed.
Used to do 340 mls plus 100g neocatw (1sachet)
Now dietician said do 300mls.
So it was 1kcal per ml so does ot make it more cals per ml as therea less mls? She said it should help bowels work better aw it should draw water into them.

Hes put on 0.1kg ah well. Better than losing weight
X

DGD I could cope with your Christmas. I nearly blew a gasket when Someone asked about Xmas and I gently said I feel it is a bit immoral to spend so much when people in Syria are living in tents in the snow..... her reply was "they wouldn't help us if we were in trouble" FFS can' t cope with such inhumanity!! sorry rant over

No idea about Neocate but logic tells me it is only a tad stronger than normal and can ?see where she s coming from! me not her!!

I try not to become too fixated on weight I look at hair, nails and skin if that looks healthy I say sod it!! But having said that Annabel only put on 1.1K in a year,
xxawful skin and nails but glossy hair again!!

Christmas bah humbug apart from the grub

Thats horrible! !
We had a delivery a week ago and the man was really shocked. The people he waa supposed to deliver to were out so he asked the next door neighbours.

They said no we won't take it they are white!!
Wtaf!
He was so shocked. Poor bugger.

His nails arent the best and his skin isnt. His hair is thick and dry like mine lol

Ds2 is ill again.
High temp and his really wheezy. He keeps coughing really bad and is sick. You can feel a rattle on his chest and you can hear it when you listen and put ear to his chest. He was crying when gp checked him yesterday so im convinced he couldn't heae properly. He is elderly and cant hear if ds2 is taking while im talking to gp but he prescribed antibiotics for his face
He said his face is red (suffers from bad eczema)

Ive got mountain high load of ironing to do but cant get a chance as 1 or the other is ill!
X

I didn't know about people. In Syria :-( I don't see why there is a big fuss over Christmas, surely being together with family is more important than getting stressed over buying gifts for people what they don't really want. And don't get me started on bloody fairy lights, and the waste of energy etc. we still haven't got our tree up, will probably go up tomorrow. If I had my way it would go up Christmas Eve! And down 12 days later!

Poor ds2 isitme, I'm not overly worried about the rattle if al coughs and clears it, but the wheeze is a concern.
Not sure about the neocate either

I hate the controversy with white, black, Asian people etc, fgs we're all the same inside, and this planet would work a lot better if people could put prejudices aside and take people on face value rather than stereotyping ggggrrrr rant over!

In some good news, elli going to the loo is getting better, he had a mahoosive poo yesterday, (after a little he had a little help with a suppository) and he signed to use the loo this morning and did a wee :-))
In slightly bad news he was weighed yesterday, and lost 1kg but we stopped the over night feed, so have restarted and will have. 2 weeks over Christmas to start fattening up again.
Al is doing good, cruising on furniture and doing hands free every so often, still obsessed with his willy :-0 and makes a grab for it when his nappy is off!
I've joined a knit and natter group, and I'm crocheting a bag lol!

Giddy I sooo agree with the fact that we are all human and share the same planet.
I felt horrible yesterday as there was a disabled person trying to get into a restaurant that had a stepand he had 1of the mobility wheelchairs thingys. He was struggling to open the door and get in.
There was no one in the restaurant
Now dh was driving and that side was a bus lane so couldn't get there and by time id reacted it was too late.
If I would have been walking I defo would have helped

Ds sounds like an old man with a wheeze.
Keeping eye on him.
He is on antibiotics so if it is a infection then it should settle unless its the start of asthma?

Giddy I think its brilliant that you have something to do.
Keeps one fresh

Giddy you are very festive, mine would not go up 'til Christmas Eve and down on the 1st but Ben Ellen and Lottie will not allow it

DGD am APPALLED by your next door neighbour (throw snails into their garden next year evil me)

I am doing knitting again and I am still a silly old fool

XXXX

I'm covering for daddy steve who is out and settling the big boy who doesn't do good nights sleeps very often. Hope we can get it a bit better over the holiday. Maybe school is stressful in a nice way but still a lot for him to cope with. He is shattered after school. So far we have had one night terror and expecting a waking at midnight to watch TV . Still if he settles you do what you have to.

Poor little mini isitmes . Young ones just go down with one thing after another. It is so exhausting.

I don't do politics. Syria, Afghanistan, Africa, Somalia. I just despair of the whole sorry mess. I don't think anyone can ever sort it out, there just aren't any answers. And if there are no ones hearing them!

I'm tired and want to go to bed.....

Xxx. Zzzzz

I have done a few fundraisers in the past for stuff like that (earthquakes and tsunamis etc) but they were my high school days ...

Ds2 is ill again with chest.
Took him to walk in centre last night as he was workinghard to breathe (ddipping in on tummy kinda hard) and she admitted he was working hard and could hear the wheeze but ds was all smiley there so she gave more antibiotics and if he doesn't get better or gets worse a+e.
Ds1 is now coughing too

Ds2 was really bad last night
Ds was rather ill.Coughing and choking fit.He turned blue under eyes and mouth.
We rang the ambulance and he was nebulised in the ambulance and then 2 times in the hospital
.Once his rates settled they sent him home as they didn't have beds
Ds is not taking feeds.His nappy was hardly wet from 8pm last night.I did tell them but 'he looked fine'Have community children's nurses coming out to him this morning. Will mention again
He's wheezing again

DGD hope things settle down for you with DGGS's I really feel for you I spent 2 Christmas's with Stefen 1st time 6 months as an inpatient 2nd time 15 bloody months 84.3 miles from home and I can feel your anxiety Be strong!!!

Homegrowns start visits tomorrow so this will be my last chance to wish you all a healthy Christmas and good 2014.

Much love to you all.
XXX

Merry Christmas and happy new year 2old, love to all the family xx

What a nightmare isitme, and a bit poor that they had no beds, could they not transfer you to a hospital which had beds? On the bright side at least you got home.
FIL was in hospital this time last year, we're spending this year with my family, much to my SIL disgust! Laying the guilt trip on dh for not being around to see her Xmas day! It doesn't matter that she is pissing off to live abroad in January leaving a 21 & 18 year old, 18 yo took an 'overdose' 2 weeks ago obviously not a big one as she made him sick and didn't go to A&E but still.
Ok rant over.

I smell poo, so best go, love to everyone merry Christmas and new year xxx