Cards for charity. Round 3. (TOF's). *Reply from TOF's!!!!!*

[~threadbear~]

The charity this time is TOFS. This charity supports families such as Lizthebob’s and my own, who have a child born unable to swallow.
Our children were born with a rare condition which affects appx 1 in every 3,500 children: ‘Tracheo Oesophageal Fistula with an Oesophageal Atresia’. TOF/OA for short! Nobody knows what causes this condition and to my limited knowledge it seems pretty random as to whom it affects.

Here are two pictures to show you the difference inside a TOF/OA child compared to a non TOF child.
Non Tof child
Tof child
Both these pictures were taken from Tof leaflets.

Babies born with this are operated on as soon after the birth as possible.
In my own case, Joe was born on a Monday evening, was taken from me to a specialist hospital on the east coast of England (we live on the west coast) and was operated on early the next morning. I didn't see him again until the Wednesday afternoon. (No, it was the Thursday afternoon).
Joe after surgery


Coming off morphine, with the line in his head.

The medication made him blow up like a balloon, as seen in the first two pictures. He was so swollen, he couldn't even open his eyes.
He had his own one to one nurse 24/7 for two weeks. The nurses are amazing. They support you as well as care for your baby.
We were in hospital about three weeks altogether.
Eventually though, after a few scares we were transferred to a ward where you start to take over more of the care yourself with minimal help from the staff.

In Oliver's case he was only diagnosed after a few attempts at feeding left him choking and needing to be resuscitated. This was because the milk was going into his lungs rather than his stomach. He was moved to Southampton hospital and operated on at about 20 hours old.
Oliver after surgery



Oliver before coming home.

My Joe on the ward, shortly before he could come home.

[~threadbear~]

(Continued)
Life with a TOF child isn’t easy. If there are other children, their lives are also affected by the challenges this condition brings to family life. It can be scary at times for both the affected children themselves as well as the rest of the family. It’s an emotional rollercoaster, with many mountains to climb along the way. It’s obviously a shock and everyone needs to come to terms with it and learn to live with it. Basically some problems they face are such as having acid reflux and needing medications. These aren’t made for children and there are questions marks over their safety but needs must. Some children may need to be tube fed for a time. Then another problem can be the Oesophageous displaying dismotility, so whereas yours pushes food down in a very orderly way, theirs can be very erratic and food easily becomes stuck and they choke. Getting strictures (narrowing of the Oesophageous) can be a big problem, which then needs an operation to be stretched. Taking your baby/child in for an anaesthetic and surgery is never easy and when it’s on going, can be emotionally draining as well. There can be further large surgeries necessary with unpleasant side effects. As for day to day life, whenever they get things stuck and are choking you have to help them get the food out, while keeping them calm and then encouraging them to continue eating. Drinking plenty at mealtimes can help.
Sometimes though parents have to resusitate their children. It’s all very scary for both the child and parent but you have to learn to deal with it and for me here, I’ve had to realise that local doctors don’t really understand the condition and that I have to be the expert who explains things to them, which was exactly what the hospital at Newcastle told me would happen. TOF children are also prone to colds and chest infections etc and are generally thinner/smaller than their peers.
Oliver was blue lighted to hospital on at least two occasions with "life-threatening" croup even though we would tell the emergency doctor that his cough and breathing always sounded bad, especially when he had a cold. On other occasions we would take him to A & E and find ourselves explaining his condition to everyone.

Watching your child being able to eat something they couldn’t previously manage is sort of a massive pleasure, if it’s all going well, but a TOF mum is always on the alert, knowing it can all change very quickly. Just try and imagine how scary it is the first time your child try’s a new food that you know they might not manage, but you have to not let it show or scare them.
Having a support group such as TOF’s is so important when you get a shock like this about your precious child and so both Liz and I think this would be a lovely way to give something back to them.
TOFS website
Oliver now:

Joe now:


A massive thank you to everyone who joins in with us on this round.

[~threadbear~]

Sorry for 3 seperate posts, but we wanted to give you a real insight on this and it was rather long to all go on one post!

So if everyone agrees maybe we could go for July 1st as a deadline? That way it would slot in with the other exchanges.

I thought rather than a theme it would be nice for everyone to do whatever they wanted, so we get a lovely mix of cards.

Thanks to all of you who participate. These children go through so much and it's on going through their lives, so it would be wonderful to help the charity who gives our families much needed support.




Rose, can we sticky this please?
thank you.

[Jen2000]

I would love to join this, the cause is one I would be grateful to help.

However, I am quite lost on what to do (new here, as if you couldn't tell! XD). Is this just any card with cross stitching, like a "Hope you and your family are doing well in this trying time"?

I bet everyone is tired of me asking questions. XD

[~threadbear~]

Hi Jen, thanks so much.

Everyone stitches however many cards they feel they want to do and then sends to the host for the agreed date. The host then sends them on to the chosen charity stating that they are from the forum.
Usually it's a mix of things such as 'best wishes' 'thank you' etc, ~ anything really that the charity can either sell to make money or can give as a prize etc. So it's not for the TOF children and their families as such, but for the charity that supports them, so it can use the cards for fundraising in some way.

If you look on page 13 of this thread and scroll down, you'll see a picture of the last lot of cards we all did, which will give you a better idea.
http://www.crossstitchforum.com/viewtop ... &start=180" target="_blank
I think I've put the link to the right page here though.

[Jen2000]

Oh! I get it now. It makes much more sense. Thank you for your help!

I will be definitely trying to get some cards made. I need to find a store first that I can go to and get some new patterns/card kits for cross stitching. I have absolutely nothing for making cards. XD

July 1st is a great date, that gives me three weeks between this current school year ending and my next one beginning.

[agi]

Oh, TB and Liz!

[Rose]

OMG that is amazing I had never heard of that before you informed us. I will be very happy to help with this charity.

These children have to much to deal with.

[~threadbear~]

Thanks Agi and Rose.
It's not really surprising you haven't heard of it, I hadn't either until three or four days after Joe was born and the hospital told us what was wrong.

Infact I'm sitting here now and thinking it was the Thursday afternoon the ambulance took me over to Newcastle from here to join him, as I remember hubby (who went over with Joe and stayed over there on a chair in the waiting room until he could get a room) came back briefly on the Wednesday to see me and that was the first time I spoke to him since Joe was born.

Hubby would know, I'll have to ask him.

[Cockneystitcher]

I'm in.

[Lizzy]

Oliver and Joe

Im in

[Jilly]

Threadbear and Liz, thank you for sharing such personal and emotional experiences
I am starting on some cards tonight

[RosemaryH]

As you already know I am in with doing cards for your charity.

My friend at work (in UK) worried herself silly when her grandson was diagnosed and operated on. Her daughter gave birth in USA and he had his op and care there until he was 3 or 4 and they returned to UK. So I already knew about the difficulties but never knew what it was called or that there was such good support.

When I have finished the blackwork I will stitch some motifs for cards, it will be a real pleasure.

Rosemary

[Mabel Figworthy]

I'd like to join in too -- thanks for telling us more about this so we have some beginning of an idea what families like yours go through!

[Lizzy]

Im a bit iffy on making the cards up ....

So wheres the best place to buy the cards from, what size and am I better buying bi fold or single fold please or the ones with no aperture. Thanks

[megandmog]

I'm off to Hobbycraft tomorrow so I'll stock up on stash and make some cards too.

[Slinky]

Thank you for your very open account of your son's condition.

I would very much like to be involved with this round of cards.

[Serinde]

I'm in, too!

[valb58]

Count me in as well.

[Lizzieh]

Thanks for your support everyone. It means a lot!!

Liz (and Oliver!)