The aim of this blog is to provide a meeting place for parents who have children with feeding problems. We also hope to provide support and offer our own personal experiences. Please join our facebook group, follow the blog, comment, use the questions/answer section at the bottom of the blog, or if you prefer, send us an email and share your stories with us.

Monday, 21 June 2010

Amelia At Last In Her Bedroom Not Mine

Well it has taken nearly 4 years but we have Amelia in her own bed and her own bedroom.
Because when Amelia was little she was tube fed so she had to be with me in the night and then the doctors decided she should be fed by pump at night so we had to watch that the tubes from the pump didn't go round her aswell she was always in my bedroom with me.
Then when she was tube free it had got into a routine that she was in my room that it just carried on.But it was decided that we would do her bedroom.So now she has a lovely pink bedroom with a bed with hearts on and she loves it. The first couple of nights she called out for me so we decided to do a reward chart if she stopped in her bed and she gets an extra sticker on her chart if she doesn't keep calling me.It has worked up to yet and she loves putting the stickers on her chart in the mornings.Then at the end of the week if she has done well she gets a comic.
The only problem is I am so used to her being in my room that I find it really strange without her.

Ideas and help please!

Hi all

I'm stuck in a strange place with Sophie's eating right now. She will happily take sips of drink and put spoonfuls of yoghurty consistency foods in her mouth but I was wondering how to progress to solid food with her?

Any types of foods that would be best to start with? I have to take into consideration her TOF scarring and narrowing in her foodpipe also, so until we know how functionable it is, could do with solid foods that break up easily in the mouth or dissolve.

She will put pieces of carrot and apple to her mouth and gently bite, but if anything gets into her mouth and she cant get it out (talking the smallest of crumbs) she starts to gag and try and be sick. Obviously I dont want to rush this stage with her but just wondered if anyone has any advice, anything at all!

Either email or comment if you have any ideas, suggestions or just words of encouragement. All will be appreciated.

Many thanks

Gemma x

Sunday, 13 June 2010

Amelia's Holiday

Hi
Just got back from our weeks holiday in Woolacombe in Devon.Amelia had a brilliant time swimming, dancing going on the beach and rolling down the sand dunes and her favourite was digging holes and jumping in .She even went in the sea which she wouldn't do last time.

The difference to a couple of years ago is incredible.I remember travelling down to our hols knowing that we would have to stop to tube feed her and then when we started off again ten minutes later having to stop again because she'd been sick as she was after nearly every feed.On the beach having to constantly watch the tape on her face incase it started to come off and having to keep the sand away from it.I have pictures of on holiday when the tube had come out and she had red marks on her face where it had been stuck to her face with tape.

As for swimming that was a no no really as the tape could get wet and the tube could come out.Basically you were always worrying about the tape coming off or the tube coming out and having to repass it.Or the sickness.

How different it is today.I want people to know there can be light at the end of the tunnel as if someone had told me 2 years ago that Amelia would be eating ice cream on her hols i wouldn't of believed them.Or eating her fish and chips in the pub at tea time.

Oh well back to our usual routine tomorrow and Amelia is back to school nursery in the afternoon.No more sunny(yes sunny) Woolacombe till we go again in September.

Sorry for the lack of blogs.

Hi all

We'd like to apologise for our lack of blogs. Ann has been on holiday and I have been in hospital with Sophie (cf stuff).

We'll post a more detailed blog in due course but i'll leave you with a couple of pictures of Sophie for the time being. Please continue to email us, comment/ask questions and share your stories with us.




Sophie has turned into a right tea belly lately. She's starting to drink properly now instead of taking it via a teaspoon.




Okay so she might not be eating veg yet but she's become very interested in helping her grandad grow some. We'll see what happens when they have grown!






This one makes me smile and also shows that she is just like any other little girl despite her problems eating.

Thursday, 3 June 2010

Amelia's story in pictures!

Hi all, here is Amelia's journey in photographs.


The first photo is of Amelia with her ng tube. As you can tell, Amelia always had a smile even with that horrible thing!






The second picture is of Amelia and I at one of the many therapy sessions at Graz.






The third picture is of Amelia's first tastes of soup at Graz!




The final picture is of Amelia aged three and tube free for one and a half years!



Please get in touch if any of this is familiar to you. There is light at the end of the tunnel.

Ann.

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