G-tube 6 weeks on

This *points up* makes me very happy.

Now, just ignore a) the mess b) the fact my child is only half dressed at gone noon and c) the fact she is covered in paint (one of those days when you have to pick your battles. The bath can wash it off later).

That is a child who has suffered terrible oral aversion for eighteen months and as a result is now tube fed. Now obviously, she did not eat the whole hunk of bread. In fact, I think the area consumed amounted to about the size of my little finger nail (and I have tiny hands) but the point is she is going for it.

We have had the g-tube for about six weeks now. I can't believe it is only that long; it feels as if we have had it far longer. I think by the time we had it, Wriggles so badly needed it, that it fitted in perfectly because there was no other option such was the struggle of feeding, gagging and vomiting. The first week was a shock to the system. I knew how much we needed it , knew how much better it would be than the NG we had been making for with for a few weeks, but I wasn't ready for how taken aback I was by the sight of it. Something artificial and permanent sticking out of your child's unblemished perfect skin is a shock. Even if you know how necessary it is, it still got me. Let alone her. I really struggled with how to communicate to a small child how she could be put to sleep, then back up in pain with a lump of plastic sticking out of her stomach and at that point, an ostomy bag. The bag went, feeds were cautiously resumed and we got back home. After a few days of feeling sorry for ourselves, we picked back up. That is to say, Wriggles picked up; she clearly couldn't care less and her attitude gave me a jolly good kicking. If a not-quite-two-year-old could cope with this, then her twenty-something mother was bloody well going to join in. Of course it isn't that simple-as a mother and an adult I am effectively "feeling for two" the emotions, the presumptions, the hopes and fears and everything that is attached to coming to terms with the fact that normality has flown out the window.

We have had some teething troubles with the tube; two infections needing antibiotics and dressings, and hypergranulation tissue making an unwanted appearance. Fingers crossed, it has now all settled down and things are pretty good. I have lost any notion of caring and have primed feeding sets, vented, flushed and hooked everything up on public transport, in lifts, in H&M, in the park, coffee shops, baby groups and in an art gallery. We have got some funny looks and stares out of curiousity but have not yet had to deal with any questions which is a relief.

When the tube was placed, we were still very much in a not-eating cycle. Wriggles is prone to being a little more receptive and trying some limited foods for a few weeks, then frequently going for months with complete refusal to take anything by mouth, touch food or acknowledge anyone eating. Even if she is not all-out refusing, she will take miniscule amounts of familiar food such as a handful of crisps a day. Hardly sustaining! Just over a week ago, we started a period of trying food again. I had forgotten how intense the heady bliss is when your non-eating child willingly takes something. When she reached out for something I nearly fell off my chair and had to hold back tears of relief. Since then, I have tried to capitalise on her curiosity especially in the finger food department and in the last week we had tried:

• Mummy's chocolate brownie
• cake crumbs
• bread (including toast)
• rice cakes, particularly bright yellow "cheese" flavoured ones and salt & vinegar
• pizza
• gingerbread
• hand cooked crisps (not by me, by M&S). Worcester sauce got the thumbs up, parsnip did not
• scones

In the last few days, she has also decided to let me spoon feed her limited things (yoghurt, mango, raspberry, banana or blueberry puree) too which is brilliant. Whilst I am over the moon about independant eating with finger foods and expanding that area, I don't want to take away from her ace progress but I will stress when I say "eat" it is far more from a sensory and curiosity point of view than a nutritional or otherwise perspective. The amounts that are chewed, and not always swallowed, are very small and are far more about practising her oral skills. Friends who have seen her put food to mouth simply do not understand the problem. The "problem" is that she might only put one thing to mouth per week if that, and there is no guarantee she will actually masticate, swallow and digest it. Even if she does, we are a long way from her actually eating orally any calories, as the time it takes normally expends more calories than it creates. So if I was to be super-keen on emphasising the calorie side of things (which for the record, I am not. It is very early days, and thanks to the tube we have a nutritionally complete formula which provides all her calorific needs to maintain and increase weight to be able to facilitate hopefully increasing food intake eventually) then the only way to do so would be spoon-feeding purees which she can take a reasonable volume of, for someone not used to eating. On a good day, she can take about 60g (half a baby pouch or jar or a small fromage frais pot) comfortably before she looses interest or gets upset. On a mind-blowingly good day, she can take just under 100g but these are rare and to be celebrated in the extreme! Those sort of amounts and the likelihood of matching those calories are at this point only the stuff of dreams when it comes to finger food or self feeding. But this is why I now love the tube: the pressure is off and it doesn't matter. We have time. We can do it at her pace, and if that takes an age it is ok.

For the time being, we also seem to have her reflux under control which presumably will only help her willingness to try food. She also seems more comfortable in herself and my washing machine is enjoying a longed for break from twice-daily service. I have now been doing this long enough to realise that this isn't a "fix". Refusal and the return of more aggressive reflux may be around the corner. It's sad but true, and I have to acknowledge this. This isn't a defeatist or pessimistic viewpoint although it might seem this way. After the road we have been on with feeding, reflux and tubes to date, I know we are far from the end or even the middle. And it pays to be realistic. It pays to set new goals or everyone becomes upset and frustrated. So if we get through more than one fromage frais in a week and I get my dinner played about with by someone that isn't me, then we're winning. It may not seem much, but to us it's huge. It has taken me a long time to accept this and adapt to realising my baby girl is not as straightforward as I might like but not any the worse for it!

Quavergate

So we're coming to the end of the first week on our whizzy new high calorie potion, Paediasure Plus. If I can find the strength enthusiam will time, then I may take Wriggles to the hallowed Baby Clinic for a weigh-in next Tuesday to see if it may be working. Then again I may not seeing as she spent the best part of a week drinking next to nothing, let alone eating. And the eating bit is not yet back on track. We are back to what I refer to (mainly to myself; I am getting quite used to having inner monologues) as Quavergate.

Wriggles really likes Quavers.

(I have developed a new tolerance for Quavers as a result.)

It helps if they are proper Quavers too, rather than own brand Cheesy Curls or whatnot.

Quavers first came into our life as one of the many helpful suggestions from other parents when no one medical was taking us very seriously that at nearly a year old, my child was still eating nothing and have seemingly developed cutlery-phobia even if I was the one using them for me. I appealed to the wise people on the Bliss message board community and received some very reassuring responses and suggestions of things to try. Melt-in-the-mouth type snacks, whether your earth-mother-friendly Organix type no-salt-sugar-additives-flavour-guilt-free puffed carrot sticks, or the more common Quaver, Skips or Wotsit were suggested to help her oral skills and give her something to hold, if she so wished. She didn't. There was one blissful moment of curiosity just before her first birthday, never to be repeated for months. I didn't forget though, and made sure my cupboards resembled a well-stocked Asda just in case she ever felt tempted by anything that wasn't out of a bottle.

Around a year corrected, teething was immensely helpful. I don't think you hear that phrase very often. I do believe though, that as well as general development, accumulating trust, etc, that the desire to gnaw generally anything not nailed down to relieve her poor gums, really did help. Because suddenly the very small circle of things that she would mouth (her fingers, my fingers, the tip of my nose, her dummy, Christmas Hedgehog's nose, Mouse, her favourite rattle but not any other rattle, rattly Frog's leg) expanded to include other rattles, books, toes, blocks, the edge of a cushion, paper, cardboard, bath toys and BREADSTICKS. Hallelujah! Although she didn't swallow or 'eat' them, she did chew on them which marked our first real breakthrough in anything not related to fromage frais.

Then, at around 13 and a bit months corrected we started going to a hydrotherapy group for early years run by our physio and some of her colleagues in speech therapy, social work and education. After a hydrotherapy session in the pool, there was snack time. They put out some very baby un-friendly (Annabel Karmel would recoil in shock) such as Quavers, pink wafers and cake as well as banana and fromage frais pots. These foods were specially picked as they are particularly good for developing oral motor skills, especially as every child attending has some level of feeding problems. Week by week, Wriggles slowly consented to touching, then holding, then licking and then tasting. It wasn't until about the last week at around 15 months corrected that she ate one, which was massive cause for celebration. SALT were very pleased too, as it proved that she could develop the motor skills which boded well for the future.

For a while she ate nothing but Quavers.

Considering she ate very little anyway and still battled with reflux, this wasn't super news.

I was over the moon she was gaining in curiosity about foods (well, one food) and branching out, but was a little concerned that Quavers contain very little nutritional value or many calories. Weeks dragged on. It felt like years. If I withheld the Quavers, she ate nothing. Not even a fail-safe fromage frais. Bitterly I recalled the SALT wittering on "Oh try Quavers, they're great at developing feeding skills." I'll stuff you full of Quavers, you silly old bat, I thought. Quavergate was in full swing.

Of course, in true baby style, just when I was teetering on the edge of complete despair, considering sending hate mail to Walkers and wondering if I would ever be able to start a meal without a little yellow foil bag, then she suddenly ate a whole petit filous, tried some fruit puree, wolfed down some custard and sucked my hot cross bun (not all at once. That is the stuff of dreams, dear reader).

I know now that Quavergate #2 is a shadow of it's former hold. She is still recovering after feeling grim; today is after all the first day in a week where using the inhaler hasn't been a necessity. We all, adults and children alike, feel horrid after being poorly and can eat atrociously. If Quavers are her comfort food and give her a sense of Independence, who am I to argue? They are after all, 88 calories per bag versus 64 calories of the Organix Goodies range. Those 24 calories sound ridiculous, but in our quest to stay on the same line on the dratted growth chart, I will take those 24 thank you very much. I might even have them with added Quavers.

Last Chance Saloon

Today, we had our review with our dietician, Lovely Ruth. It had been a few months since we saw her and although I had the familiar butterflies, I was largely very confident with the progress Wriggles has been making with trying out new foods, textures both orally and otherwise and her acceptance with mealtimes generally. She has made huge strides with her oral motor skills this year, learning how to chew and push food around her mouth. I hoped for at the least a gold star!

In the weighing room though, I began to catch a whiff of reality as they furtively plotted her height and weight. I knew from regular weigh-ins at baby clinic and the fact her ribs have suddenly got visible that although she isn't consistently dropping weight, that her weight is very unstable. I tentatively asked how the dreaded graph was looking. She has dropped another centile, in weight and also in height for the first time.

Although never exactly beefy, I used to have a vaguely chubby baby. When we started out weaning, Wriggles was quite healthy looking and cheerfully sitting around the 50th centile. Even after her intensive care foray, she still stuck not too far from there. Even after the dreadful summer of hospital admissions, she didn't stray stupidly from her line, and sat around the 25th centile mark with her height nicely matching up. No one was really overly bothered about the chart at this point. She wasn't doing anything overly silly, although no one was quite listening to me about the lack of eating anything. Ironically, at the height of her reflux when she was vomiting large amounts nearly every feed, she was around her heaviest.

And then, bit by bit, it all began to fall away and over the last few weeks I began to uncomfortably notice my child is resembling a xylophone. I know part of it is that she is growing up and loosing the baby features and also is a lot more mobile and full of beans. But to keep being full of beans and keep her development fuelled, she really needs energy. And energy, as my biology lessens taught me, comes from food. She is already at a disadvantage with slightly dodgy lungs thanks to prematurity, so she needs even more energy than your average mad toddler. Ideally when your baby or child is learning to eat, it helps to have some weight to play with as they might yo-yo whilst dropping milk feeds to accommodate food and tasting through things finding out what they may or may not like. Unfortunately, this is where we hit our snag. Sitting at the bottom of the blasted graph, we now has no weight to play with and an all-too-well documentation of having "no reserves." And thanks to acquiring a dietician and a very interested paediatrician, now the graph does matter and we are very much on the radar of the team again. We now have to make 'plans' and have 'options'. And I'm not just talking choosing lunchbox items.

A Day of Two Halves

If ever there was a day of getting out on the wrong side of bed, today was it. I only have one side of bed, but obviously today it was Wrong. 


I had a rare lie-in until 08:20 (thanks Wriggles!) but awoke in grouch-mode and it got worse and worse. I intended to get ready early and go out before 10 to take Wriggles to soft play before lunch in the hope of tiring her out a bit so she might re-take up napping in the daytime and thus start sleeping a bit more normally at night times. Partly due to the rain and mostly due to my ineptitude, we weren't both ready until gone 11. Wriggles was driving me up the wall, only content to throw everything off my bookshelf constantly ad shriek at me if I dared correct her from reading books upside down (not a deliberate attempt to spoil fun: she can and has for months read them the 'right' way and now her upside-down-and-back-to-front method is very rough, breaks the spine of all the books and thus makes the pages likely to fall out. She has developed superhuman strength and can easily destroy a board book) or suggest that she could do something, anything, other than book flinging either with or without me. I discovered I had missed a series of payments on things so had to do some organising and grovelling which is never nice, and finally wrapped up a parcel to post to a dear friend who is having a baby shower this weekend, which I cannot afford to go to (WHY do airlines charge practically an adult fare for infants who will after all, only be sat on your lap with no luggage?). There wasn't a proper reason for getting cross, especially with Wriggles who after all was only being a toddler, but I found myself getting increasingly wound up and stressed with everything. The washing up pile haunted me, reminding me that I was rubbish at doing things when I knew I should and I felt tired and a bit overwhelmed by just life.

By the time we left, it was pouring down but I could not stand to stay inside. I know from prior experience, being couped up with a full of beans Wriggles in destroy mode is not a recipe for a happy day. We had a nice hour where we go some jobs done, called in on our recently retired childminder who was delighted to see the Wriggly one and had some lunch . Then the trouble brewed again as I tried to persuade the baggy-eyed and yawning child to have a nap. Just five minutes (or preferably twenty if you're asking). She looked sleepy. She has until very recently, had a hour or longer nap after lunch to recharge her batteries. This has suddenly turned into a battle meaning by 5pm she is a whining and exhausted child and bedtime is frankly a miracle when it eventually occurs. We walked around the park. We walked around the park again. We had some top-up milk. We walked around the park some more. In the rain. An hour later, with a very frayed temper I gave up. 

It is very rare I am grumpy with Wriggles or tell her off seriously. I do employ "No!" at appropriate moments ("NO Wriggles do not turn the TV on or off/grab plug sockets/climb onto the toilet/throw your dinner on the floor") but partly I've never really had cause to tell her off and partly I'm terrible at it as I instantly feel terrible. I'm not talking about dodging discipline, but shouting for the sake of a bad or frazzled mood over something that doesn't warrant that level of reprimand. I know it was wrong to snap at her, but snap I did. What with working and managing everything on my own from baby things to finances to the sodding washing up (where, where does it come from!) when it gets to the end of the week, a hard week of sleep regression, a frustrating previous day at work, then to be honest I need Wriggles' nap as much as she does. Just to get fifteen minutes or so to me. Just to sit down without guilt and breathe a sigh of relief. Just to know that the whining will almost-probably be cut out later. Just to have a cup of coffee that is still hot. Just to stop being two parents rolled into one with eyes in the back of my head and enough patience to shame a saint, for a tiny tiny fraction of time. I was cross and I told her off. I'm not proud of it. At all. But it was that or burst into tears. Needless to say, it did nothing. With defeat and now over an hour lost, I gave up and chalked it up to my list of failings and headed into soft play. As I paid the entrance fee, I knew full well that she wouldn't last the two hours it gives you but by now we both needed somewhere neutral and shrieking friendly.


And actually it did the trick. I chilled out and relaxed especially as Wriggles clambered over me. Seeing her cackling away to herself trying to climb the wrong way up the slide reminded me why I love her completely. I helped her perfect her clambering skill, which I suspect I may regret. It was rather hot in there, and as time passed Wriggles began to concern me slightly. She was getting very sweaty and clammy; I removed her t-shirt and clipped her face back. She was still very hot. In horror, I watched a bright rash spread across her arms and chest. It was very red and very spotty. Whether fever or heat rash it was hard to tell. Gradually it faded as I tried to cool her down and my bed time it is as if it had never been there. It is horrible moment though when your heart leaps into your mouth and panic is suddenly everywhere! We came home without even and had a cuddle that put the world, or at least mine, to right.


This week has been a little ray of bliss in terms of Wriggles' feeding. We have tried:

• Mummy's sandwich
• Mummy's cake
• Strips of pitta bread
• Wafers
• A bit of buttered roll 
• A vegetarian sausage 

...which have all gone down relatively well. I'm not talking huge amounts, but just tasting and Wriggles voluntarily putting them in her mouth is such an enormous step. I decided to bite the home cooking bullet today and make some sweet potato chips. To my amazement, as I deposited some on the highchair, Wriggles abandoned the strips of toast she was dribbling on and took one. And put it in her mouth. This was a beautiful moment; it was the first thing I have made she has touched*. Obviously I am delighted she now will try toast and sausages, but was giving up hope of ever being able to nourish her myself! Alright, I know it was just a bit of essentially fried potato. I imagine I could have possibly obtained some from the frozen aisle as the supermarket. But I cooked it. 

It dawned on me that I am enjoying food times with Wriggles. For the last 14 months I have been very much trying to enjoy food times zen to a fine art, but enjoy it? No way. Would you enjoy your offerings refused for months and months? Every day, several times a day no matter what you do with it? Would you enjoy seeing your child make herself sick with distress because she caught sight of a spoon....no not her spoon, your spoon you intend to eat your yoghurt with? Would you enjoy finally revelling in her trust that fromage frais is actually yummy only to see her stomach contents cover the entire kitchen because of one little gag? No, thought not. Live with, yes. Accept, yes. Chill out about, very almost yes. Enjoy? No. But now, now Wriggles is trusting food enough to at least make sensory discovery and her own mind up and at best actually use her oral skills and digest it, now there is variety and her enthusiasm matches my own, now it is fun. Now if she just put on a little bit of weight so I couldn't play the xylophone on her ribs...!

Getting a bit cocky with the "climbing" malarky...

Tears

6:18pm

It's teatime and there are tears. 

This isn't unusual. Wriggles' aversion to feeding has often distressed her to the point of tears in the past. I have long learnt that if this reaction is even hinted at, to chalk it up to experience and leave it for another go later. Somethings are just not worth it if that are that bad.

What is unusual is that today the tears are from me: I am crying.

But not from frustration.

Wriggles has just put a vegetable finger to her mouth.

No wait, she has put it in her mouth.

And...

I hold my breath, almost too hesitant to get my hopes up.

...bitten, chewed and swallowed! 

Tentatively, over about an half an hour, she returned again and again to nibble away at the vegetable finger. What was even more incredible than this* was the fact that when she couldn't cope with a texture, like a whole piece of sweetcorn, rather than gag and vomit like she has always done, she moved it around her mouth until she could spit it out. I was amazed at this sudden leap in process than I have been waiting for for what is now over a year. To actually willingly handle food, put it to her face, try some, repeatedly try it and use her oral motor skills to break it down... it is so simple and what we take for granted, but it is such PROGRESS and even thinking about it now brings a lump of pride to my throat. 

The past year has been a rollercoaster and has taught me a lot in patience and acceptance and I must admit, there were times like in recurrent weeks whereby she would not even go near food, where I fear it would never happen and we would succumb to tube feeding. I have a small section of baby and children books on my bookshelf that have taunted me with their weaning guides and food ideas. Before Wriggles came home and long before weaning, I devoured them soaking up ideas and formulating my own plans. I talked to the neonatal nurses about weaning premature babies and read the Bliss literature. I couldn't wait and had a box of food items and accessories before she even reached term. I did not forsee  a fraught period whereby she wouldn't even entertain being near food or touch cutlery; I didn't know the work that would be to break down her fear or distate for the sensory textures. Slowly, we have introduced milestone after milestone and now, a taste and management of "real food" is the icing on a cake. I'm not expecting miracles; it might not even be the beginning of the end of this time, but I am so pleased for her.

 I am so proud of my clever baby girl.

"What's all the fuss?"

*if you have never read anything here before, Wriggles has struggled with oral aversion and building up trust never mind a variety has been a very long slow process. In over a year, we are now at an albeit limited, "stage two" of the weaning process!

Miracles do happen

Saturday 26th May, 2012

Wriggles' food diary

age 20 and a little bit months (17 and a bit corrected)

07:00

200ml Paediasure Peptide milk (high calorie formula milk that has been partially broken down to aid absorption)

09:00-10:40

Graze on small crumbs of biscuit found on the carpet. Buffet is interrupted by Mummy hoovering said crumbs up. Lord knows where they came from/how long they have been there

11:15

What are these delicious items?! About five Organix Tomato Slices (wheel shaped puffed corn type items. Mercifully containing no salt, unlike the beloved Quavers Wriggles has lived on for the past two weeks)

12:45

[ferrets in my handbag and thrusts yoghurt pot at me] "Mother, this here I believe is a yogurt and this is a spoon. Feed me!!"

Just over three quarters of an Alpro soya yoghurt, toffee flavoured

13:15

[mime] "What is that, mother?"

"My sandwich. Yum yum yum."

[grab]

"Errrr you can have A BIT. I need some lunch!"

"Hmph."

Chews a corner of malted bread: first time she has consented to trying to eat bread!

13:28

One cheese and onion crisp (Scottish Grandma's lunch)

Half a ready salted crisp (Mummy's lunch)

Several more Organix snack thingies

13:32

Stop trying to sneak food past me. I can see you have opened the chocolate rice cakes. Give!

A nibble of rice cake. Does not pass the taste test.

Another chew of becoming-stale corner of Mummy's sandwich

13:48

The end of a cardboard kitchen roll tube

13:50

160ml Paediasure Peptide with some chilled water as it is Very Hot

15:40

125ml Paediasure Peptide mixed with 25ml chilled water

17:30-18:25

Polish off remainder of Organix Tomato Slices bag and nibble on fingers

18:35

Two thirds of Alpro vanilla soya yoghurt with a about a quarter of Plum Apple and Raspberry stage one puree pouch whilst waiting for the metro back home

18:50

Few more spoonfuls of soya dessert and fruit with intermittent grazing of bit of sponge finger located under the bookshelf. (Note to self: must tidy up more often)

19:15

Chew fridge magnet.

Swiftly have fridge magnet removed.

Return to increasingly soggy sponge finger

19:40

150ml Paediasure Peptide

20:10

Gag on bottle and projectile vomit across collection of toys, sofa and carpet.

Looks suspiciously like entire teatime contents from 17:00 onwards*

20:45

125ml Paediasure Peptide as nightcap (and to replace the vast majority of dinner and previous attempted nightcap)

Ignoring the gag-induced vomiting, this is the most Wriggles has eaten for bloody ages.

It is also probably the healthiest she has eaten for bloody ages.

(Alright, it might not read very healthily, but largely she lives on a) high calorie milk which usually makes up around 90%+ of her daily nutritional intake b) Quavers-the curse of Speech and Language's suggestions c) occasional crumbs of biscuit, and not always sugar-free baby-friendly guilt-free ones at that)
It is certainly the most adventurous. She tried at least two new things. In one day.
Does this mean that my own meals are no longer sacred?!




*people always say airily of vomit "oh it's never as much as it looks!". However, Wriggles is very good at disproving this theory. On previous admissions, nurses have done double takes at the enormous pools of yuck on the floor and frequently have been known to exclaim mildly unprofessionally "Christ almighty, was that just in one sitting?" and her notes generally read 'vomit: MASSIVE +++'. She appears to have a pretty sluggish digestive system too and can quite easily soak a large adult bath towel. She has also previously (accidentally I sincerely hope) aimed into receptacles such as a mug and bowl. Classy.

Gingerbread

A year ago, I would not have believed this picture. A year ago we were in the hell of trying to persuade an orally aversive child to eat before I realised it was oral aversion. Wriggles is still not a brilliant eater and has made what seems minimal progress but to me and to the medical people around her is phenomenal. And the important thing is that we have made progress, no matter how small or large. Very slowly but surely, the list of foods is inching longer...

At 20 months old, or 17 and a half corrected Wriggles can:

*eat fromage frais and similar textures like set custard or thick yoghurt

*she can manage small, dry foods in her own time, like Quavers, crackers or biscuit

*she will sometimes decide to try or at least touch what I am having. So far the only progress made on this front of going on to eat this is one chip at the childminder's but I live in hope!

*eat most fruit puree and small amounts of vegetable puree if it is mixed with fruit puree or yoghurt

She is even beginning to show preferences, such as apricot yoghurt is the best flavour fromage frais and that cheese flavoured things are yummy. Above, she is gnawing on her new favouite: gingerbread men! She can manage about half of one leg at the moment so I get the rest-not complaining there!

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.