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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Very clever 2old, when I thought the placement of ds jej was wrong I spent a very long time messing around aspirating the different extensions and testing with ph paper then panicked and went to the ward (where I was proved right it had migrated)
Sneeze yes it was a complete bloody nightmare stuck in hosp around a hundred miles away from home and the other children for months thinking ds was not going to be coming back with us at the end of it. Think dh was close to breakdown. However it is in the past now.

Can't blame jess for ending up at wrong time, I normally turn up a day early, why I don't know!
Isitme any baby yet? Shouldn't say that really I always hated being asked constantly when mine were nearly due.

Still in bed as ds is asleep.
Its fasting so routine has gone to pot as dh wants ds to be up late so he can try to get him to eat.

Enjoying the lie In.

Hows jess doing and the boys?

Tooloud im 39+1!!! Have had enough! I think its because I know what ive got to gi through and its scary to think what happened with ds1 will happen again. Plus this time we know blood levels aren't good so will most likely be in hospital after too
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39+1 in this heat. omg it was just like that for me with DS donkeys years ago! Weeks of roasting hot weather. I feel for you.

They need an emoticon thats for this hot spell

Tooloud...have you seen my photos of my DGSs ??

Yup sneeze 39+2 now. Seeing consultant today.
Need to see whats going on. Im sure baby needs a hand remembering what to do at this stage lol.

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Tooloud they are adorable have a lookx

They are v v cute, Elliot still has a real baby face hasn't he those curls are adorable. Baby is gorgeous too, I still get broody even though we aren't meant to have any more!
We are trialling various walkers at the moment see Elliot has the rifton how does he get on with it? He looks like he is standing well and is well supported in it.
Isitme, it will all be fine, it will all be fine, rinse and repeat.

I got a sweep today :)if nothing kicks off will be induced on Saturday :)
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Well Grandaughter so I shall soon have DGGC no 2 soppy how is DGGS hope h is OK. Good luck with the delivery

Tooloudhere my heart goes out to you. Was in hospital with Stefen for 15 months like you over 100 miles from home. Thought I would land up in a psychiatric unit. Hope your DS does not do a repeat performance!!

Oldsneeze glad you , Jess and boys are OK. Like you having problems with Jay's feet, they seem to think a red sore boney lump sticking out of foot is OK
Total cockup at Annabel's wheelchair apt so 60 mile round trip completely wasted.

2old is knackered, old and past it . Jay's rear end still erupting like Vesuvius but only 1 more day of AB's. Hopefully will manage last 4 days at school so I can tidy this heap up.

Elliot especially is a cutie still . He walked fairly well in the rifton but so so reluctant despite endless encouragement, then physio brought round a falling to bits old Kidwalk by leckey, and he is amazing in it. He can't propel himself but he enjoys it and walks so well. He has a new one on order. The rifton is very supportive but the kidwalk is termed dynamic. It moves and adjusts plus leaving the hands free in front. A bit terrifying at first as el will drop his head and we could see drawers etc getting in the way . So far ok. Go to lackeys kidwalk site to read about it, I think it's the way to go.

Jess missed her wheelchair appt so the boot here was on the other foot . We would be furious if we traipsed 60 miles for nothing.

Would an orthotist look at Jays foot? We are in his bad books but heyho! I hope the wound infection has been sorted by the abx. Poor lad. The buddy buttons have been posted but missed last post as I am senile a bit forgetful and busy.

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Does isitme's silence mean she is busy???

2old we have given him a strict talking to as to what acceptable levels of worry are and that he is not to overstep the mark again! It is a different world in hospital like an altered reality and tat length of time on a camp bed with no sleep makes psychiatric units look appealing. He is not there yet (don't know if he ever will be) but better much better than he was. Hope jays back and bum resolve their respective issues soon. Nothing better than a good old battle with wheelchair services, ours treat you like it's a massive favour to get anything let alone something that works and weighs less than a tank!

Sneeze, I think we are meant to be looking at the kidwalk we have to see what the physio arranges. Dread to think how long it will take to actually get one. Ds is so weak he has struggled to move anything they have brought so far, trouble is he needs all the supports which makes the damn things heavier so catch 22 really. Is Elliot going to school in September ? Think I recommended you the tomato sitter on another thread, did you get one? We are very pleased with ours it has made a massive difference to where we take ds as he stays comfy and well seated.

Nope still here.
Doubt the baby will come without being induced.
Ive had a feeling with this baby that he will be a lil poorly but that just might be motherly thinking as thats all ive jad with ds1. Either way they are both my babies.

No advice on wheelchairs sorry.

Granny hope jays problems resolve soon.
Hope everyone is well
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Yes tooloud, we did get the soft touch sitter and it is brilliant. Size 2. We got round the expense of a base by getting a poang chair from ikea, kid size, for £20 and strapped the sitter to it and its brilliant. Really stable, perfect height, and he loves it. The sitter has also been so good in a restaurant! Pretty blue colour too!

I know what you mean re weight of walkers, el is a weakling too and it needs a lot of coordination to pull a heavy machine around, but the kidwalk is teaching him to weight shift so its all good. We've had an old one on loan til the new one arrives so its not been too bad.

I know exactly what you mean about being in hospital and that other worldly feeling. Feels like you're in a parallel universe, it all looks the same but different! It's cacooning and safe, but full of fear at the same time!

Isitme.....hang on in there. Xxx

Im pretty sure the baby wont come until after ive been induced.

How is everyone?

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All OK. I made special cards for each of elliots nursery staff with his super cute photo and they all cried. Bet jess didnt though, she's well ard!

Lol
Aww thats cute.
Come in to be induced and im 2-3cm contracting every 4 mins! Without any help lol
Once im 4cm they will break waters
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WOW DGD please let me know-if you have time no smiley for excitement. Try not to worry I know where you are coming from lots of love XXX

Hope all you other little (s)tinkers are ok xx

Omg! Labour. Best of luck and go with the flow

hello, sorry i've not been here for a while, long story i'll not bore you with it
but just wanted to say best of luck to isitme remember to ask for what you want and don't take any crap.
all well here love to all xxxxx

Ohh a baby is on the way (or here already). All the best Isitme. X

Sneeze you are very clever £20 for the chair is a bargain compared to what I paid for the base!

Waves to giddy.

Oy TooLoudhere What about me?? Big sulks
DGD hope all is going well I am going into panic mode.

Love to all scallywags

I never forget you 2old, you have been quiet didnt know if you were about! how is jays back has the infection cleared? Ds always takes ages to heal from surgery.

I am getting inpatient waiting for baby news, hope they are all snuggled up by now.

You are forgiven TooLoud, me quiet that'll be the day

Jay has returned to school and is as happy as Larry. The infection has cleared up finally after 12 days of AB's. Mind you this is the 1st infection he has had since we adopted him in 2004. Perhaps being dumped in a children's home has given him crack hot immune system !

Am thinking of taking bets on which baby arrives first. Am far more excited about DGD, Come on girl

xx to all

Quick update. Will read up on everything sooni had a 8lb13 boy yesterday morning.

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Yay congrats, did it all go ok? Good weight on baby, what does ds think?

May I be the first to congratulate you here Well done my lovely XXX
Await eagerly for your news much better than the Royals
xxx to you all