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

[isitme1]

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

Thanks granny mouth feels a lot better. Just keep getting food stuck in tge gum

glad hes on the right treatment now granny.
that's brill hes not needed antibiotics

Giddy how are you and the boys

Gp thinks ds needs his heart checking over. Sleep apnea, fast breathing, pain in left side of chest and left arm.

:( never rains monsters, incredibly worrying which DS?

Sorry been a bit absent. El has been poorly since Wednesday, he wanted to go back to school today as it was dress as a super hero for children in need but got sent home early he's all temperaturey and sleepy now and that's after calpol poor thing Al has 2 permanent green slugs trailing from his nose, and I'm starting to sneeze and feel throaty oh and I have two weeks off work, bloody typical!

2old Bowen therapy is a bit of hippy dippy but non invasive and actually quite relaxing it's just a small manipulation of the under lying muscles I don't know what she does but she says she opens them then closes them ????

Hope everyone else is ok xxx

Ds1 giddy.
You know that feeling you get when something isnt right. Thats the one ive got for ds1. Hes been getting temps for a few days, pain in chest, lathergic at times which isnt normal for him and generally off. Hes been off for 2 days (school) and went in today due to super hero day and he was spiderman. Will upload pic. And when I picked him up he was all pale and looked really fed up anf upset like he was in pain. Since then hes had a high temperature

Hellooo

Sorry not been around been hectic, someone bumped into my car on Monday I still have a rotten cold and a hacking cough. My back and back just ache, and we're trying to decorate the living room so all the fumes from the paint are giving me a headache.
Went to kids up north yesterday very useful for ideas etc.
Monsters what has the doc said a out ds1?
Hope your ok 2old xx

Nothing yet as hes not in but he needs re referring to general paed for ecg.
where about up north did you go. Any good, ?.

How are the boys. Are you ok??

We're all fine just a pain in the arse trying to sort out solicitors etc and getting money back for car seats etc.

Kids up north was in Manchester really good, got some good ideas and different equipment to try

Any news yet?

Ds has had some results back. Scops show 'nothing significant' which imo doesnt mean 100% clear. Bloods show low.iga. do you remremember me asking 2yrs agout this? It means hes having allergic reactions and that he needs to see chest specialist too. Ent will do sleep study as he stilp suffers from sleep apnea.

He ate some naan bread and was in lots ofpain. He still suffers with pain and has been put on llong term antibiotics as the low iga means he will get ill a lot my thinking is this attacks immune system?

How is everyone?

Dont like it when it goes quite :(

Sorry folks, have been up to my neck with SS as they have the "bright " idea that those using adult services should pay for their own transport out of their DLA - £300/week!!

DGD re low IgA Annabel has this and has weekly infusions of Gamma Globulin and has been so much better!

Will write more hopefully tomorrow

xx

We're in a poorly house at the mo, El has some bug, getting temperatures but nothing else, no school for a while!
Al is having an eczema flair up not helped with the teething and the runny bum he had last week
No idea what low IgA means
Boys are bored and fighting got to go x

Aww hope the boys are better soon giddy.

Grannh do you knkw what Annabels levels are? Ds was 0.6 the time before this. Apparently that's really low. Hes on long term antibiotics. He needs referral to general paed to keep hos care organised and sort the ecg out etc. Hes now complaining of pain in both sides of chest.

Granny I hope you set them straight!

Hi all sorry for my ?laziness. I am so bloody busy.

Was so proud of Ellen at her day centre AGM she gave a short talk and started "Hello I am Ellen can you all hear me at the back" I was so proud!!

Hope all is OK with you lot.

DGGD re Annabel's results she runs about 0.8 and GOSH seem okish about this BUT she does have a rare syndrome. Jay like my DGGS had meningitis has a crack hot immune system but was it because he was in residential care.
The jury is out!! Love to all your LO's

Giddy hope all is well with you and your family.

Any tips how to survive this festive season have 15 for Christmas!

Its me ilovemonstersinc
how is everyone?

Will you stop changing your name you are confusing your poor old senile Grandmother

How are you? Life manic here what with nativity plays and award ceremonies, Christingle Services and carole services in school 30 miles away and me a good Jewish girl!! And that's just the 2 LO's. The oldest 3 are partying their heads off.

I will be glad when New Year arrives!!

Hope you are all well

Lol baubles! Put the tree up today, alex is undressing it ha ha shouldn't have bothered.
Well done Ellen!
Hope everyone is well
merry Christmas x

Ah Giddypants we solved the "undressing of the tree" and hung it from the ceiling

bronchoconstrictive allergic related mediated gastrointestinal dysmotility. Another diagnosis for ds.

Granny isnt it hannukah? If yes happy hannukah.
Aww award ceremonies and plays. Bet your proud well done

how do you hang it from the ceiling lol. Would love a pic. We put it on a table lol.
How are the boys giddy and you and your mum

Bump

DGD yes you are right but I am not a "good" jewish girl but am still proud of my routes

Re Christmas Tree will try and download a 'photo when my "clever" homegrowns arrive. It looks a bit naff but does save nagging at Annabel!!

Sorry about DGGS diagnosis totally unable to comment but will ask some younger ex colleagues.

Happy Festive Greetings to all and peace to all xx

Merry Christmas everyonexx

Been absent a bit because we've all had this nasty vomiting bug, poor wee Al has got the brunt of it, he's lost lots of weight, and just looks perminantly sad!
Hopefully on the mend been 24 hrs since any explosions, El on a restricted diet of easy digested stuff and he's not been too bad.
Mums ok, cooking dinner for my brother and ye olde farticus lol.
We are off to the in laws again this year .... Joy!
Love to all x

Hope you all had a brilliant Christmas. It was fine here at SN House

Home growns and families here ! and 3 loopy dogs (I am not a dog lover)
but have smiled through it.

Seriously it was lovely to have the whole family here and guess what no squabbling!!

Hope you are all well and relaxed.
Love to all XXX

.

Happy New year everyone.
Been a very rushed Christmas.

A stressful one lol.

How is everyone? ?

Happy new year everyone, I was working yesterday, looking after a young girl with SN, parents lovely but very intense.
Not working now for a good week or so, El back at school on Monday yay!
Poor Al can't get away from having loose stools, :-( he's over the bug but now got a red baboon bum from teething nappies.
Mum ok not much else is happening really