Update On Group

First group of children have now finished the first picnic group in Stafford and we all feel it has been a big success.We have had loads of fun and lots of play,stories and getting very messy.It was so much fun and they did really well with the foods that they were playing with each week.Obviously messy play isn't for every child with feeding problems but as these children are referred to us then we know it is ok for them.We are doing our next group in May and i'm looking forward to helping some more children on their journey to eating.
Once we have results from the first group i will be going back to the PCT and giving them feedback and hopefully they will start listening to us and start helping the children.As alot of you are aware there is a big lack of services to do with feeding problems and it needs to change.
The picnic group is one of only two groups in the country so we are really lucky to be running them .But we have alot of support from feeding specialists so with their help have got them up and running.
I will keep you updated on how we progress from here with the PCT and how our groups are going.

First Day Picnic Play

Well it was the first day of the picnic play group yesterday at last!
We were feeling really excited that at last there is something out there for some of the children with problems with food and i was so glad that i could be a part of that.I hope that in time we will prove that these kind of groups are needed and we can do the groups on a permanent basis.As a parent who has been through the experience and come out the other end with all ok i know what a difference in my daughters case that messy play made.Even just meeting other parents and talking helped me alot as i felt so alone and the only one with a child with feeding problems(which obviously i'm not but thats how i felt)
The groups are going to be great fun for all involved( including parents) with alot of getting messy and making food fun to be around.I will keep you posted on how we are getting on and lets hope these groups are around for a long time and help our children on their journey of eating.

At Last Picnic Play Group

Sorry it has been so long since last post but we have been very busy trying to set up messy play groups in Stafford and at last we are just about to start them after alot of hard work.First Gemma and i managed to get some funding which we applied for which was brilliant.Then it took me ages trying to find a room which eventually were given free of charge.Then it was getting all the equipment that we will need each week which soon ate away at the budget.I think i have about £1.50 from the funding left which might be able to buy us a couple of apples!
The groups are going to be very structured with getting messy alot and making food fun.I'm really looking forward to actually being able to try to help some children who have feeding problems and there is a great team of professionals(yes there are actually some but not many professionals who do understand our concerns on feeding problems) who are really helping us to make these groups a reality.Once we get going with the groups and see how well they work then we will be going back to the commissioners and proving to them that messy play or play picnics as we are calling them do work.It is about time the services were provided for our children with feeding problems and if i have evidence they work the commissioners will have to listen.I will keep you posted on how we are doing and i just wish that there were more of these groups as in many cases messy play does help.

Nice to see you all.

Just a quick thank you to everyone who came last night to the Wacky Warehouse where the kids enjoyed themselves and the moms and nans could have a good chat.It was a great night and hopefully we can have more get togethers soon. If anyone has any ideas of places to meet up please let us know.It gives parents a chance to talk to other parents who have children with feeding problems and to share our experiences and general chit chat.Thanks again.

Get Together

Hi
Just to let you all know our next get together will be Monday 15th November at Catch Corner pub which is a Wacky Warehouse ,Junction 13, Stafford, 6pmish.
Hope to see you all there.

Recognition.

Hi all

Ann and I were nominated for an award and we attended the ceremony yesterday. It was a complete shock and we had absolutely no idea.

We were nominated for the 'significant contribution to improving services for patients and carers' award.

Well we only went and won it!

Here are a few photos of the trophy and our certificates.













It was a very interesting day lets say and Ann and I had lots of fun. We aren't really interested in winning trophies etc but to be recognised for all of our hard work is nice. Just to know that someone out there acknowledges what we are actually trying to achieve is great.

We will continue to try and get the services improved for all of our children with feeding problems and neither of us vow to stop until we do.

We are currently in the middle of a battle with the PCT but as soon as we get somewhere we will blog about it.

Take care x

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.

Well...

Today we have started to tube wean Sophie.

OH. MY. GOODNESS.

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

xxx

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?

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!

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.