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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Gali a very close family friend had bc and thankfully she is 100% cancer free now after all her surgeries and treatment.

Hope she is ok though
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Granny well done doing it yourself.

We're at Sheffield tomorrow with ds. Grr long day.
I could do it before pg but right now body and baba needs calories every hour or so so I dont feel sick. Thats the only thing that works!

Sneeze hope dd is better soon. Has she had the flu jab??
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Yes, DD and DGS had the flu jab. They wouldnt do me as Im too young Did the old fart though!!! DD is also going to have the whooping cough jab later on...what will you do?

Will you be getting to sheffield by car this time. Trains are too stressful this time of year...everyone going to meadowhall! Good luck anyway, bet you are sick to death with all the problems with DSs insides! We are starting to crack it with the blended diet. Gently increasing the volumes. It is brilliant in the bowel department. He was almost impacted on formula now going most days with no straining...it slides out....hope you are not about to eat

DD has just phoned to say that DGS just did a commando crawl!!!. Only one little go till he got his ball but he has NEVER got anywhere near it. Think it may be a combination of better nutrition, his new lycra vest and HOURS of physio work by us. Its a vital developmental phase and he probably wont do it again for weeks but its amazing for a child who has ZERO coordination to achieve this. This is the best Christmas present I could wish for

Awww. Its amazing when dc treat us like that and go forward rather than back.

Im going to have the flu jab once I stop feeling shit. And the whooping cough one too.

We went by train and it sounds like it was one of his last appointments there.
Hes been transferred to Manchester and we have appointment here in January.

Ds hasn't put weight on but hes eating a bit more orally which is brilliant.

Hes also trying very hard to talk!!
Hes was trying to tell me last night (on a double decker bus) that his cousin was upstairs asleep lol. Mixture of sign and language.

His gastric dr said that the chance that the next baba having problems like ds was higher than normal but he said we know what thw signs are and when/if ds1 needs his help again all I need to is ring him.

I've got kidney infection and antibiotics im on arent working and all the gp could say was drop another sample off in 2 weeks.
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. It's not good to have kidney infections and be pregnant. Change your GP as he sounds useless. So pleased your DS is making progress and starting to talk. DGS makes a variety of sounds and points but its all a bit hit and miss with communicating. He saw a different comm paed who was very supportive of the BD which is a relief after Dr No! He has lost 1 Kg in a few months....we think from all the formula vomiting and a vomiting bug, so we are yet again on the trail of building him back up.

DD has SPD and having physio and has a belly band . Hope she doesn't need a corset, but she thinks that because she has such a huge c-section scar from the crash section (DGS was out in 3 minutes!) her abdo muscles are weaker. Can't see her managing to carry on working til the usual time.

Hi all, I've been lurking but not posting recently. We all had horrible cold/virus bugs (not flu as we've been jabbed) but are on the mend now and just about ready for xmas!

I had spd with ds and have been getting niggly pains here n therr. Mw did give me the physio no. But not rang them yet.

Ds is doing ok eating about half the time which is better than before.

Hope your all recovered in time for Christmas! ! Starfish x

Hi all what a week am glad all DC's are now on holiday
Gave DD her infusion (sub-cut not IV needs doing weekly but not so invasive) yesterday
My neck scan Thursday.
Gastro appt Wednesday
Dentist Tuesday X 6 me and DC's
Saturday I am Knackered

Hope you are all well and are ready for the old bloke in a red coat!!
Grandaughter SPD I gather is awful How many weeks are you now? Is my DGGS ok send him Big hugs
Oldsneeze hope you and all yours are well including Old Fart, mine has a b'day tomorrow so DGC's are coming over for a "party"
Galli and Star hope all is well with you both
HAPPY CHRISTMAS TO YOU ALL

HAPPY CHRISTMAS everyone.xxx

We have also been cold ridden so Xmas is all behind, not even bought food or presents for DD. on the mend but hey ho! Do I care!

2old .....appointments, flipping heck! But do enjoy your party xx

Food bought, presents bought and wrapped....done and dusted in 2 hours

Sorry I haven't been around. Healthy, happy Christmas wishes to you all.

Mum does have breast cancer. Will find out treatment plan on Thursday. I'm sure she'll be fine.

2 weeks to panel....... Exciting!!

DS is super excited am expecting a huge pukefest today and tomo. It's a wee shame. While everyone else over eats at Christmas poor DS ends up on dioralyte usually..... Lol. Xx

Merry Christmas everyone x
Hope you all had a good one!!
I blended Christmas dinner yesterday
(Turkey, sprouts, cauliflower, broccoli and gravy)

I did the same today at 12 and then at 1 I offered him some salmon and he ate most of it!!

He wae constipated and this has helped him go
Wooop
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Hope everyone had a good day yesterday!
DH was wide awake at 1am on xmas morning and was worried that santa hadn't been.
I resorted to setting my alarm for 2am when luckily he was asleep and I crept in and left his stocking stuff by his bed as I didn't dare try to reach for and fill the stocking!
He woke at 2.15 and that was it, he was awake for the day!.
Yawn!
Stockings downstairs next year!!

Galli. best wishes to your mum. Its very curable nowadays, but still awful I know. Fingers x for baby arriving. That makes three of you expecting!

Starfish, is your hubby a big kid at heart waiting for santa to arrive??!!! I know, but it painted a gloriously absurd picture of DH in his jim jams listening for the sleigh bells!

Merry Christmas too. I also blended the christmas dinner but not given as they didnt turn up to visit as it was getting late. Not our turn for The Dinner this year. Will inflict it on him tomorrow, as, tbh, looks and smells a bit vile..sure its the sprouts! Good for the bowels though as you say isitme

Merry Christmas everyone. Thanks sneeze. Things a bit overwrought as sis insisting on going to hosp with mum even thought SDad is going. She cant understand mum may need some privacy to just be her and not mum, gran etc!!! Of course I am the bad one!? Tried explaining how hard it is to ask people who are trying to give you support to let you have done space/privacy. Been there and wasn't able to send folk away which justmade things worse but she just seen it as me making it about me..... Not about me trying to show her (sis) a different perspective. She wants to be thee for mum and so do I, but I think we need to respect that she may need some space too!!Grrrrr why are families so difficult? Been crying much of the day, not about the cancer but that Sis sees me as selfish. Am I?

Poor DS didn't have Christmas dinner. Gagging and retching galore due to excitement so had little good and much dioralyte!!! Lol!

Hope the world is well with you all. Xxxxx

families can be extremely difficult at times but sometimes the best support ever! Its just a bit hit and miss. DDs DH is having a similar thing going on with his sis as their dad is also ill. Major stress all round

DGS pooing for england at the moment, must be all the fibre blended in the foods.

Had a quiet xmas and just hope next year is better than the last.Don't you just wish you could sail into quieter waters and just lead a boring normal life?

Sneeze: Boring is definitely gois! Lets hope we all have a boring 2013, although some gois excitement is also welcome. X

Thats families for you gali
Atm I've had enough of mine here.
Ive been up in tears this morning as the eldest has tried to keep the bread away from us and ds and dh wanted breakfast and I couldn't give it them.
We live in an awkard little setting and he locked us out of the main part on purpose so I couldn't get to some fresh bread.
Bastard he is.
Hes put me off breakfast.

I hope we all have a nice, safe healthy year ahead of us.
Im very much looking forward to meeting the new baby. I cant wait to feed him/her as I had no luck with ds. Im anxious about having the same problem but I hope everything is well.
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Happy New year everyone x

First let me wish you all a very peaceful 2013
Galli hope all goes well with matching panel, I remember our 1st 30yrs ago I was in theatre assisting (only in a nursing capacity I might add) when 'phone call came through HE WAS OURS!! How different it is now.
Oldsneeze glad Xmas was ok sorry about family problems. I am ?lucky apart from my own I have no one I came from a disfunctional family (SW talk!!)
Grandaughter how are you my lovely and my DGGC Just ignore your family if they are stressing you out you don't need it Love to you all.
Life here rumbles on. Xmas exhausting. All home growns arrived. The others all behaved themselves for once.
Have now become adept at doing DD's infusions just need GOSH to watch me and then I am away YIPEEE
Forgot exploding colostomy bag

Happy new year everyone.

And yes, I did mean ds was waiting up for Santa, not dh! oops (too much sherry!!)

DS had a hospital appointment on sat 29th and we now have end of march/start of april penciled in for his spinal op............

That did make me giggle.
Dh waiting for santa

Ds has been pretty constipated.
Hes had some movicol but nothing has happened yet.
Going to give another sachet soon.

Hes been granted 2yr nursery funding which is going to hopefully help his oral intake.

I've been working out dates and I will hopefully find out what im having close to my birthday.

Can't think of a better 21st birthday present :)

Isitme. good news on the nursery funding. It will be interesting to see if he copies the others eating normally, brilliant if he does. Blended diet works really well to get some pooing going, DGS had a really good clear out before christmas!

Starfish. Is it an op the straighten his spine. Have seen it done and its a big job, but very safe and amazing results. Remember a nice looking pleasant man who had a very severe deformity and tbh you only saw the hunchback look. When he walked out all I could see was an absolute hunk who was very self effacing as he'd never had his head turned by adoring girls!

2old Do try to get a rest! You must be exhausted. Good thing DDs infusions can be done by you. Hope it means less traipsing up to hospitals and faffing around.

xxx

I think everyone is still trying to recover from the party season.

Come baaack!!
Its been a horrible few days here as apparently im wrong.

Its kicked off here again over how the kids are treated. Ds is treated like the runt of the litter compared to the other grandkidswhich pisses me off
I told m sstraight that its not fair. Ds hasnt Done anything wrong and dh has backed me all the way. He normally says don't stress your parents out its not worth it.

Ds was at the hospital yesterday and hes been put on erythromycin to help his gastric problems and should help with constipation too.
Im 12 weeks woop. 2nd trimester here we come :)

Granny you need to rest a little too.

Sneeze hows you and dd and dgs??

Gali?? Hows everything going?

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Hi all my friends its about time we put the festive season behind us for 9 months How are you all?

Galli not long now I am sure it is only a formality, is it a local placement?

Oldsneeze hope all is well with you and all the little sneezes, hope DD's pregnancy is now running smoothly and you can all relax for a while.

Well Grandaughter 12 weeks hopefully you can now start to enjoy your pregnancy. How is my little man (DGS not your DH )
Please don't let your parents get you down, they are being awful. My evil stepmother always pointed out "they are adopted you know nothing to do with us" DH's family are brilliant and treat them even better than their own!!

We are fine here am getting crack hot at weekly infusions just wish the little madam would sleep more than 4 hrs. DS is ok but bloody seizures problematic. Older DC's now back at Day Services, bowling at present

All of you take care xx

Isitme. Do you still live with your parents? If so look to get somewhere you can have a bit of peace and quiet. Some families are just not nice and treating grandchildren unequally is just not on! Have you looked into blended diet (real food down the tube?). Its helped big time with DGS constipation and vomiting issues. We are very pleased and if the dietician objects she can get knotted!

Wonder if gali's baby boy has arrived yet....def like christmas!

2old fits what more can I say. Lack of sleep what more can I say again!

We are praying (and I'm not a very religious person) for DDs friend who has a toddler with a genetic syndrome and whose new babys being investigated for epilepsy. Cant see an obvious connection between the two totally different things but we dont know how she will cope if its the dreaded early onset epilepsy iykwim.

DD is fine and blooming euphemism for fat (I like to wind her up) She is 28 wks and has at last gone off sick with back and SPD. Got so bad she was washing her hands unecessarily just to lean on the sink for a minute or two to ease the back pain! Doesnt help having to carry a 4 year old around at home, but at least she can rest more. DGS has learned to blow a flute to try to make a thomas the tank engine (good incentive) noise (not play, just blow!) its good though for future speech
xxxx