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.

Tuesday, 28 September 2010

Tube wean begins.

Big news (I will duplicate any tube weaning updates via this blog and our personal blog).

Had the appointment today with Sophie's feeding psychologist and dietician.


Today we have started to tube wean Sophie.


Before you freak out, we wont be going guns blazing and just cut off her tube milk completely though, it will be a gradual process. Sophie has 5 bolus milk feeds throughout the day via her tube.

The first that we have culled is her teatime feed.

We will try this for one whole month to see if it will trigger Sophie to associate that eating food will cure the hunger sensation. If this is successful then the next to be culled will be her breakfast feed and so on until no tube feeds left.

This is not going to be an easy ride, currently Sophie gets very cranky when she is hungry and wont normally settle until she has whichever tube feed she is due.

ALL of her nutrition has been via her tube for nearly three years!

Monitoring her weight is going to be important and I will do that each week and then speak with her feeding team for a progress report. I am so glad we have them on board, I trust them immensely and I know they have Sophie's best interest at heart.

There is no concern with potentially losing some weight as she currently has a fat supply that would put a hibernating animal to shame :)
Obviously bowels are another area that will need to be monitored closely too. They will also liaise closely with Sophie's CF team and bloods will be monitored if deemed necessary.

I cannot emphasise how hard this whole process has been.

There have been lots of tears and heartache.

Until you have a child that would rather go to sleep and become unconscious than try a tiny morsel of food, I guess you will never fully see how difficult this has been for us.

I know it is going to take time, there will be huge set backs, there are going to be days where it will seem easier to just give in and tube feed, there are going to be days when we have to go back and tube feed, but I am excited.

I am nervous.

I am apprehensive.

This has to be tried though, for Sophie's sake.

So this is it, the beginning of the end hopefully. The end of one of the hardest battles I have had to endure with my daughter so far.

I hope you stick with us, I know we are going to need lots of positive energy and would love you to join us on this huge journey of attempting to convince my three year old daughter that eating is enjoyable!

Day 1 pictures.

Take care all


Friday, 24 September 2010

Sickness Bug

Why is it that if your child has had a feeding problem it is always there in the back of your mind that the problem will happen again.Amelia has been sick the last couple of days and it still goes through my head What about if she doesn't want to eat after the sickness has gone? I know nobody wants to eat when they feel sick but i just can't help myself thinking these things.MAD.Of course she did ask for food today which was a relief. All this got me thinking of the daily stress of trying in the early days to get Amelia to eat. Of having to let her eat at her own pace when really i was panicking in my head that she hadn't ate enough that day. It is so tempting to keep asking her if she'd like this or that to eat but know you shouldn't. It is so frustrating and i honestly don't think that the professional people realize how much of a strain it is on the parents and families of the child.I know even now i will tell my partner off for pushing Amelia to try to eat something when she doesn't want to it is just in our nature to try to feed our child.
What is also frustrating is having meetings with the PCT and then not hearing from them again.We have requested another meeting with them to meet up and get feed back from our last meeting but have heard nothing.Gemma and i are trying very hard to get better services in our area for children with feeding problems and still two years down the line we are still trying.But we will keep going and keep trying because it is about time people had the support and services they deserve.
Does anyone in the UK get good services where feeding problems are concerned? i would be interested to know as i haven't heard anyone say they have.Let me know.What about other countries how do you get on?

Monday, 20 September 2010

Party time

Amelia had her birthday at the zoo yesterday and had a brill time.We went up to the castle in the zoo grounds on a train and then into a room to see some little animals.This year it was a lizard, rat and chinchilla which they could stroke.Then they made a sand thing to take home where they pour different coloured sand into a container.Then it was into another room for some food and i was lucky enough to have Sophie (who is Gemma's daughter )on my lap.You can read on their blog how she got on at the zoo . Then it was face painting and then we could go round the zoo and on the fair.It was a very tiring day but we had loads of fun.Can i just say that it was lovely to meet Sophie at last and she is a lovely little girl.
By the way at the dentist that i was dreading Amelia did well and let him look in her mouth and he said that it is fine to leave it so that was a relief but trying to tell Amelia in future do not bite on plastic its not a good move!

Wednesday, 15 September 2010

Dreaded Dentist

We know because of Amelias feeding problems in the past that she has some cavities and we were hoping that we could just try and keep them at bay for the time being.But Amelia decided the other day to try and bite a plastic top off a bottle which in turn got stuck inbetween her two front teeth.When we got it out part of her tooth had gone too.So tomorrow she has got a brill day, in the morning the dentist and then in the afternoon a trip to hospital for a heart murmur check up.she used to be ok with the dentist and would quite happily open her mouthand let him look but last time it was shut and she refused point blank to open it.I blame a previous appointment to see her doctor who when he asked her to open her mouth she did and then he shoved that stick thing on her tongue to look at her throat when she started to gag.So now it is always no way is anyone looking in my mouth.I don't blame her really but i can see us having tears tomorrow.I will let you know how we get on.

Friday, 3 September 2010

Experiences Shared

We would love to hear your stories and experiences of going through the process of getting your child to eat.Have you found the doctors helpful or as in my case not? Have you tried messy play and how did it go?Have you got a child who is ng tube fed like mine was and your experiences with dealing with it?Or is your child a fussy eater?We would love to hear from more parents andhear how it is going.
At the minute we are trying to set up a messy play group in our area and are on the look out for a venue and can't wait to get it started.
Can i also say thank you to those who met up with us at the last get together and Amelia really enjoyed herself at the Wacky Warehouse.Hope to meet up again soon.
Related Posts with Thumbnails