Crumpets!

Thanks to another Mum at the annual PKU Christmas Party last weekend, I have discovered a wealth of recipes on the SHS website (http://www.shs-nutrition.com/lowproteinliving/recipes/). SHS is a company who manufacture low protein foods and which I can get on prescription for Gremlin. There are some great things to try. Today, I made Gremlin some crumpets and they don't look too shabby, if I do say so myself:












I also quickly made some 'Ginger Thins' which Gremlin really, really enjoyed. Moomin and I had made and enjoyed some christmas biscuits the day before, so these are ones that Gremlin can join in with. They are very tasty, and Moomin and I enjoyed them too. Moomin asked for 3 whilst waiting for her dinner, so really can't be bad. (She didn't get 3, by the way- not before dinner!).

We've had big problems with tummy bug virus, constipation and teething this week, so all meals have been massive challenge, but we are muddling through and she is only just under with exchanges and gel. Fromage Frais remains our saviour when all else fails.

Advent Calendar fall out

Enjoying her first taste of PKU Chocolate:

Subsequent realisation that she is only allowed one per day:

Wonders will never cease

Gremlin appears to really enjoy broccoli (go figure). It is on the funny list, so she's only ever had one portion then got cross she couldn't have any more. I phoned GOSH and am told that 65g of broccoli is one exchange (1g protein). So today I weighed out 32g (approx 2 florets) and gave Gremlin half an exchange at lunch. I was gobsmacked by the result given the tough times we've been having. She ate both florets with such efficiency that there was no mess or debris left at all when she had finished. None on the tray, in the bowl or on her! I've never seen anything like it. As if to prove a point she then proceeded to use similar ruthless efficiency to discard the carrots, cucumber and tomatoes over the side of the tray (whilst holding my eye the whole time) and didn't even try a bite of any! Unbelievable!

It's been a while

I have had nothing to report as the stand off continues. 2 days ago I discovered 2 molars coming through which explains why we have had such a grumpy little Gremlin for the last few weeks. Tie that in with the horrible nasty cold and cough and Gremlin has been right off her food for weeks now. Tonight, I am writing this having had to walk away and leave Daddymin to take over. I have had enough. She got cross before she got in her highchair and would not even take a mouthful of gel for me. Daddymin is able to stay much calmer than me, and has managed to get all her protein into her, by very sneaky manoeuvres, which is very good going. It is so exasperating.

Here is a photo of her I found on my phone from happier times. I hope we can get back to this soon.....

Humous

Gremlin has a stinking cold and is struggling to eat and drink. I decided to take a slightly new approach at lunchtime. I've given her things on PKU bread toast before but today she had the same as Moomin and I. Chick peas are high in protein so I measured out a quite small looking 13g (1 exchange) of humous and spread it on. She absolutely loved it! She seems to enjoy strong flavours, so this fits the bill perfectly. Moomin did, and still does, adore humous so it's lovely to find another thing we can all eat together. Now we just need the garlic to help shift this dreadful cold..........

Strawberry Dilemma

To strawberry or not to strawberry?

Gremlin loves strawberries more than anything. Full stop. With bells on.

Now we are getting into November, it is in no way even near to being strawberry season. Gremlin comes from a long line of Gardners and Growers on her Dad's side and Nanamin still has very strong opinions on out of season strawberries (which I'm inclined to agree with). So far, Grandpamin has overruled Nanamin and bought his smallest grandaughter her favourite thing when we go to visit, but today they just didn't taste right and had hardly any flavour......... what should we do?!

Hi Ho Hi Ho

This week I went back to work. With regards PKU, it's taken a lot of planning, training and quite some organisation but so far so good. We're very lucky that Grandmamin is looking after Gremlin, along with Moomin when not at mini school. In addition Daddymin has managed to arrange to work from a more local office for the days when I am at work. This is extra helpful as I start work very early so Daddymin can leave later on those days. This is how it has worked so far:

1. I plan and calculate all Gremlin's meals and snacks the night before and write them in her food diary.

2. Daddymin gives Gremlin her breakfast according to food diary. He records what she has eaten and what she has not!

3. Grandmamin gives Gremlin her lunch and afternoon snack according to food diary. She records what she has eaten and leaves what she has not on the side for me to recalculate later.

4. I review food diary and work out whether I need to recalculate her dinner. I give her her dinner according to food diary and any recalculations.

In addition there are lists on the fridge of protein free foods that Grandmamin can give as extra snacks should they be required. So far every day has required recalculations (as the independent streak continues unabated) but the system works. I'm so relieved because I spent months worrying about this and how it would all work!

Move on up

Well, I am very pleased to report improvements on both sides. I am making a massive effort to be less stressed, and Gremlin is eating a bit more happily. She still wants to be doing it herself but she is tolerating some spoon feeding by me and I am letting her play with the spoon more with her protein free stuff. It is a happy compromise. She is already getting more proficient with the spoon:



Another useful tip- Get a 5 year old friend to help. Lilmin came for tea and wanted to help- Gremlin loved it and ate far better for her than for me!

Finding it hard

I want this blog to be as honest as possible about life with PKU so I'm going to tell you all how it is this week. But first I want to publicly thank 2 people. The first is Daddymin and second is my lovely fellow PKU Mum Ruth who have both really pulled me through it.

I have found things very difficult this week. Initally I felt a bit flat after our GOSH appointment, worried that I hadn't done things as well as I could have. But then with Gremlin completely refusing to be spoon fed I reached about as low as I've been since Gremlin's diagnosis. Things had been working for us, and Gremlin's levels good but suddenly it felt like all the rules had changed and I had no plan of attack. The finger food protein things that GOSH suggested ended in mess and unknown protein quantities, and the ones for her to spoon feed herself ended similarly with an additional volume problem. I felt like I'd completely lost control and despite frequent reassurance that short term out of range levels would not hurt Gremlin I just couldn't bring myself to believe it. That may be true for other people with PKU but this is my daughter and I'm not prepared to risk it.

Daddymin could see I was struggling and phoned Nicky, the GOSH specialist PKU nurse. Nicky is great. And talks lots of sense. She reassured Daddymin that we should continue to use yogurt as a back up option and continue to let her try to spoon feed herself as much as possible. She also confirmed that this is a tricky stage for all parents of children with PKU, and you just need to do what you can to get through it. She also outlined what would happen should Gremlin's phenylalanine levels remain out of range, and detailed several steps that would take place in order to get them back in range with the last step being admission to a ward for daily monitoring. It sounds daft now but we were not aware of these steps, and knowing that they exist has given me a great deal of comfort. We had been doing so well that GOSH had let us be, apart from the weekly blood test results, so had started to feel a bit alone with it all I think. It is great to be reassured that we aren't. Also, Gremlin not eating all her protein would result in low phenylalanine levels which is quite the opposite of what causes brain damage to people with PKU. It is not good, but not so accutely worrying.

I emailed Ruth. Ruth is my guiding PKU light. She is brilliant. Her daughter is 3 so she is much more experienced than me, and is always so reassuring. Ruth took the time to write a very detailed reply which explained what she did at around the age of 1. Much like us they were not at the point of self spoon-feeding, and continued to spoon feed for some time yet. She commended Gremlin's finger feeding abilities and assured me that yogurt was one of their saviours too. Most importantly though, Ruth can look back at this stage with hindsight now and tell me that it does get better, and they come out the other end unscathed. She also said that we should do what works for us and not worry too much about what we 'should' be doing and when. I always, always feel better once I've spoken with Ruth. I really hope that I can offer the same support and guidance to other PKU Mums in the future.

So........ I've battled and struggled on worrying and worrying but with the help of these two wonderful people I now feel much better and have more of a plan. We will continue to do what works for us. I will cook meals with protein in when I can. I will spoon feed protein in when I need and am allowed to. I will let Gremlin practice spoon feeding with protein free food. Should all else fail I will spoon feed Gremlin yogurt at the end of her dinner to make up whatever exchanges she is short on. And I won't worry quite so much. Gremlin has the best people on her side, who do watch her phe levels and will pick us up and look after us if need be.

Rubbish Messy Day

It's been a really tough day today. Most days I just get on with dealing with the PKU diet, but today had been a challenge from the start. Gremlin is a bit off colour I think as she has refused to finish all of her meals, and so with that, all of her protein. Each meal's protein content was rolled over into the next and we have ended the day still short. In desperation I tried to give Gremlin 43g of yogurt (high protein, and my backstop banker) to make up the difference and unbelievably she didn't want that either. She did, however, snaffle the broccoli florets I put on her tray to play with while I tried to calculate what she had eaten and what she still needed to eat protein-wise. Tricky minx. I decided to try a technique suggested by GOSH yesterday and measured out 1 exchange of Philadelphia (17g full fat variety) and spread it on some of her PKU bread. I then let her at it. She bloomin' well ate it, sort of. I appreciate that I have to let her learn to feed herself, but how on earth will I know how much protein has been eaten when the meal ends up like this? Gah.

Golly GOSH

We trundled back to Great Ormond St Hosptial (GOSH) today for another check-up. Good news- Gremlin's levels have been good, in fact a little low so we have gone up to 7 exchanges (that's 7g of protein per day) and I have a stash of new food samples to try with Gremlin. Bad news- I need to start trying harder to get Gremlin's protein into her meals, rather than giving it separately first. This fills me with dread, as I know that the protein is not guaranteed to get eaten. In addition, protein free finger food is no longer enough and I need to let her feed herself the meal more. GOSH say I need to be brave about it, but I fear that is easier said than done. It is hard to be brave and bold with any of this but I will try my best.

As a happy aside, we went to Nando's for dinner afterwards (it was a late appointment) and spotted Ratatouille as a 'Fino Side' dish. Daddymin checked with the kitchen and it is protein free and suitable for Gremlin to have with some exchanges of chips when she is a bit bigger. Daddymin LOVES Nandos so this is very good news. Here she is enjoying a banana for her pudding:

Curry Distraction

Mostly right, most of the time. Mostly right, most of the time. I'm trying very hard to keep calm and not get stressed when Gremlin (increasingly) refuses her food and/or gets very cross at me feeding her, so am keeping Ruth's mantra at the front of my mind.

In a bid to forget this evening's traumatic dinner, which involved an emergency exchange re-calculation and rollover into yogurt (v. high protein) performed with screaming child in one ear, I am going to share another popular protein-free recipe instead. She loves this.

Sweet Potato Curry

Ingredients

2 Sweet Potatoes, peeled and cubed
1 Carrot, peeled and chopped
1/2 Red Pepper, de-seeded and chopped
1/2 Yellow Pepper, de-seeded and chopped
1/4 Leek, sliced
(or whatever variety of protein free vegetables you have)
1/2 onion, finely chopped
1/2 teaspoon Garam Masala
Pinch Curry Powder
Pinch Turmeric
Pinch Ground Ginger
1 tbsp Olive Oil

Method

Place 2/3 Sweet Potatoes in pan, with other vegetables except onions and boil until tender- 10mins ish.

In a separate pan place remaining sweet potato and onion. Boil until tender, drain off most of the water and return to the heat. Add oil, garam masala, turmeric and ginger and mash contents of pan into a smooth paste.

Serve other vegetables drenched in paste.

You can serve this on its own, as Gremlin likes it, or with prescription protein-free rice, or even regular rice (45g) as an exchange.

Happy thoughts ;-)

The spoons

I've been brave and tried to let Gremlin have more of a go with a spoon. However, it seems 1 spoon is not enough. Today we had 4 on the go. I would help her load one, help her guide it into her mouth, then leave her with it. She'd then discard it as we moved onto the next one. I even let her do it with some of her protein providing element (25g sweetcorn, for the first time and a hit). So not so bad as expected. Not tooooo much mess, and all protein accounted for. Clever Gremlin.

Happy Birthday!

Well here we are. Gremlin turned 1 today. I can't quite believe it. A whole year of PKU survived and, to a point, mastered. Gremlin is doing fantastically well and hitting all her developmental milestones. Her blood phenylalanine levels have been more in range than out of range. She enjoys her food and eats a very varied and interesting array (within reason) very proficiently. She is inquisitive, sociable, funny, kind and loves her big sister more than anything (except possibly strawberries). I am so proud of her and the way that nothing phases her. I am also increasingly amazed at the ever brilliant Moomin who, at only 3 and a half herself, has a very good working knowledge of PKU and always checks whether Gremlin can eat things and how much protein they contain. Gremlin is very lucky to have such a fantastic cheerleader and supporter looking out for her.

Gremlin has taught me so much in the last year and I feel I'm a better person for it. My life has been completely transformed by her and, despite my frequent bursts of PKU related frustrations, I wouldn't have it any other way.

We had a little birthday tea party with all Gremlin's grandparents and it was lovely! It was full of tasty food and almost completely PKU friendly. I made a cake (Fate mix available of prescription) and covered it in butter icing and vegetarian jelly beans. I found some vegetarian jelly crystals in Holland and Barrett and used the website on the packet to find out that they were 0.3g protein per 100g so transformed them into a cat and mouse jelly. We also had Loprofin pasta (prescription) with homemade simple tomato sauce for a salad, pku bread (prescription) and jam sandwiches, cucumber, tomatoes, grapes, plums and, of course, the PKU favourite QUAVERS, in 3 flavours now! It does take a lot of organisation and planning but managing the PKU diet is possible and needn't be too different, as this party showed to all of us.

Buzz, buzz, buzz I wonder why he does......

I'm afraid I've got a bit ahead of myself. I get so excited when there is something new and particularly 'normal' for Gremlin to try that I can't wait any longer! Gremlin is 1 tomorrow, but today she tried honey for the first time. Honey is not suitable for under 1's (due to risk of Botulism - oo-er) but I let her have a little scrape on her piece of PKU toast this morning. I think she liked it, although it wasn't met with the dynamic enthusiasm I had been hoping for! Moomin has only recently decided she likes it (previously 'too spicy', whatever that means) so perhaps Gremlin will feel the same way. We'll try again tomorrow and see how we get on.

Rebel.....with a really stubborn streak!

Aaaahhh. It's got worse but we are surviving, just about. The monster big teeth are still causing untold grief, but Gremlin has also decided that she doesn't really need me to feed her anymore. She just about tolerates me doing her gel (medication) but has started kicking up a real stink when I offer her the protein element of her food. It's quite tricky as that's the bit that I need to make sure she eats. She's trying to grab the spoon, so I'm trying to pre-load it for her and guide it in, but it is inevitably ending up everywhere and I have no idea how much she has actually eaten. I'm trying to insist that I keep feeding her the protein but I have now had 3, maybe even 4, days where she is not finishing meals and I have to roll over the protein into the next meal, then again into dinner. It is frying my maths brain as I have to calculate what she hasn't eaten, what portion of 1 exchange (g of protein) that is and then how much that portion would be in another exchange (as they all have different protein content). It's quite hard to explain but I know what I mean! So far, we have only ended one of those days short on protein. Not too bad considering.

Teething rebellion

My worst nightmare happened today. Gremlin refused her lunch. She was cross and angry right from the point of going into the highchair and getting the gel into her was a real battle. She totally refused her main (protein providing) course- it didn't look very tasty, to be fair, but she wouldn't even try it so I think there was more to it than not liking it. One word. TEETH. To add to my misery, we were out at a soft play place and there were no other options where I could calculate the protein content. I gave it a good fight but eventually cracked open my emergency packet of Quavers (very, very low protein crisps and a PKU diet staple it seems!) and she ate a few of those, but that was that. Game over.

However, I'm very pleased to report that it was actually ok. In an ideal world she eats her 6.5g protein staggered throughout the day, so I always try to do 2.5g breakfast, 2g lunch, 2g dinner. Today we ended up with 2.5g breakfast, 0g lunch and 4g dinner. She ate her dinner fine! Babies eh?! I do know that some days I won't be able to make up the difference, as Gremlin is increasingly showing she knows her own mind, but as a PKU Mum friend said to me once, "As long as you are doing it mostly right for most of the time, then you are doing ok." Amen to that.

Soup

My dear friend in Slovakia told me to think about soup for Gremlin quite some months ago. It's only now that I feel suitably wintery to go for it! Today I made some Tomato and Roasted Red Pepper Soup, with thanks to the dusty overlooked Covent Garden Cook Book at the back of the shelf. We had another dear friend visiting for lunch so wanted to aim for something protein free but tasty too that we could all enjoy. Unfortunately, it was a bit lacking in red pepper because I only had 2, instead of the 6 I needed but nonetheless Gremlin loved it! Moomin quite liked it and I think Alex did too! We are seriously back on the soup bandwagon......

Mango Hedgehog and friends

An exciting evening in our PKU house. Further to another great tip off by Gremlin's auntie (a key member of Gremlin's growing army of low protein spotters), I investigated the ice cream section of the supermarket. I was looking for Swedish Glace- lactose, cholesterol and gluten free ice cream. I found some lovely looking vanilla tubs and gave Gremlin a treat for pudding. The vanilla Swedish Glace has 2.5g protein per 100g so I held back half an exchange from her main course and let Gremlin have 20g for her pudding. She was a bit shocked by the cold but very, very quickly overcame it and wolfed the rest down with gusto. She followed it with the increasingly popular and protein free 'Mango Hedgehog' (with thanks to my well travelled friends Lestoid and Jagger and their advanced mango eating knowledge).

Broccoli and other funny ones

I think I've touched on it before (with banana) but there are certain fruit and vegetables that Gremlin can only eat in small quantities. I sometimes feel like these are an extra trick to try and catch me out. You cannot apply a blanket rule to all fruit and vegetables, as although most are protein free, there are these tricky little characters which can only be eaten in limited quantities. Only one serving of one item is allowed to count as 'free' per day.

Fruit
banana (one small per day)
dates
figs (dried only)
peaches (dried only)
physalis
banana chips (dried)
mixed dried fruit (small packet per day, not Goji berries)

Vegetables
asparagus
beansprouts
broccoli
brussel sprouts
cauliflower
mange tout peas
plantain
runner beans
sugar snap peas

Oh this PKU business can be tricky sometimes. Green beans are protein free, but runner beans must be limited to one portion a day? I didn't even realise there was any difference between the two, being only a very recent bean convert.

In addition, some fruit and vegetables do contain protein. Peas, sweetcorn, potatoes, broad beans, spinach, yams, kale,avocado and passion fruit (to name a few) are all high enough in protein to be exchanges only.

There's so much to learn and some days I do feel as though my brain can't handle any more. I have lists of vegetables, pasta, cereals and their protein contents all over my fridge.

A new breakfast

We are stuck in a bit of a rut with breakfast. Gremlin can eat measured quantities of lots of regular breakfast cereals, but they are quite a lot of volume for her to manage at the moment. She eats some, then struggles with the rest so it becomes a bit of a battle for me to get it all in. She's been having 28g (2 exchanges) of Farley's Rusks with some of her PKU Milk for as long as I can remember. I sometimes add in an Ella's kitchen breakfast pouch (80ish grams= 2 exchanges)but they are 99p a pop so not very often!

The other day I discovered Plum's Baby Muesli. 15g of this bad boy with some PKU Milk is equivalent to 2 exchanges. It is very textured, so she enjoys chewing and munching on it and looks pretty tasty to me too. It does state 12months+ but as she is 1 next month (Whaaaaaaaaaaaaaat? How did that happen?) we thought we'd give it a try. She loves it, and we can start to move away from the trusty rusks without breaking the bank, much!

Wibble Wobble Wibble Wobble

Jelly!

I have steered well clear due to gelatin content but was very pleasantly suprised by a solo Grandadmin investigation at the supermarket. He phoned me up, pleased as punch, that he had found something Gremlin could eat. I thanked him but didn't really believe it until I'd seen it with my own eyes. He's right! Not all jellies. But Hartley's ready made pots of jelly are totally protein free! Gremlin tried an orange one today and, after the initial texture shock (very funny), did her funny/giggle/chunter noise which means "Give me some more of that fine food immediately please Mother".

A little word of jelly warning though for other PKUers and PKU Mums- avoid the reduced sugar ones which contain aspartame. This contains phenylalanine and should not be consumed by people with PKU.

They survived

Better than that, they both had a whale of a time. And slept better than they do at home. Grandmamin did a sterling job and followed my Gremlin food instructions to the letter. Gremlin did as Grandma asked. I have booked them in again in a few weeks for our wedding anniversary!

Also, not strictly PKU food related, but a pat on the back for Gremlin. Her phenylalanine levels have been in range since early May 2010. That is nearly 4 months and I am pleased as punch!

Mixed Feelings

Moomin and Gremlin are going for a sleepover with my parents tomorrow night. I am so looking forward to a night off. Moomin went to stay with them now and again from about 6 months (but has always been a better sleeper than Gremlin) and I think it did us all good.

Tomorrow will be Gremlin's first night away at 10 and a half months and I am absolutely petrified. It is a good thing to do for many reasons but control of her diet has been down to me (and Daddymin a bit, but mostly me) and tomorrow I will be handing it over for 24 hours. I have spent the last couple of hours sorting things and writing detailed lists of what and how much she should eat and when and I do trust my parents totally, but I am still petrified. As Daddymin reminds me, Gremlin will be fine as even if she eats something she shouldn't, as a one off it will not hurt her (it is long term sustained high levels which cause the damage) but that doesn't really relax me. I never want her levels to be out of range.

My return to work is approaching fast, and Grandmamin will be looking after Gremlin for 3 days a week. So this is very good practice, as I keep telling myself again and again. Grandmamin knows and understands the PKU diet, and has done her best with weighing tests I have given her! Grandadmin will do as he is told and is very good at maths (very helpful for weighing and recalculating). I have done all the preparation and planning, and need to learn to control from a distance.

Fairy Cakes

A bored Moomin asked to make cakes this afternoon. I found the prescription 'Fate Cake Mix' in Gremlin's cavernous PKU cupboard and thought we should have a go at something she could enjoy too. They were very easy to make- just the mix, warm water, butter and a dash of vanilla essence whizzed up together in a bowl.

They weren't very pretty, so I'm not sharing a photo with you, but me, Moomin and Grandmamin all found them to be perfectly acceptable. The star of the show hasn't had one yet, as we ran out of time and I was worried it would fill her up before dinner so she wouldn't eat her necessary protein element, but I am absolutely confident they will be very well received.

Non Exact Butternut Squash and Red Pepper Stew

Carraway Seeds contain some protein (see earlier post! 19g per 100g = 5g per exchange) but the amount in this means it is negligable per serving. These rough amounts made 4 10 month old portions!

Ingredients

Glug of olive oil
150g ish butternut squash, peeled, de-seeded and cubed
1 garlic clove, crushed
1/2 small red chilli, de-seeded and roughly chopped (or small pinch of chilli powder)
1g carraway seeds
1/2 red onion, roughly chopped
Small bit of fennel, cored and roughly diced (optional)
1/2 red pepper, de-seeded amd diced
1 carrot, cut on the diagonal
1/4-1/2 pint of veg stock
Small pinch of chopped coriander

Method

Heat oil in large saucepan. Add squash, garlic, chilli and carraway seeds. Turn in the oil for a few minutes. Add remaining vegetables, cover and cook over a low heat for a 5-8 minutes until starting to soften.

Add stock, cover again and simmer for 20-30 mins until vegtables are soft but holding their shape. Remove lid, season and reduce some of the liquid. Serve with coriander.

I whizzed the stew up a little bit with the blender to diffuse the coriander and added 30g peas to one baby portion to create a 1 exchange meal.

Raspberries

Happiness after a juicy nectarine

Good and Bad

Good- I made my first batch of low protein bread and it was ok! Before now we have tried the ready made loaves, which are minging. I think that is the most appropriate word, and Gremlin would agree. This creation today though, made with the special mix, water, oil and a bit of TLC, was very passable. Gremlin approved and covered the dining room in crumbs to prove it.

Bad- She's playing up with her food again. Yesterday at Grandad's house for lunch, and today with 2 meals at home. I know what it is. She does not want to be spoon fed. She wants to do it all herself and is protesting loudly whenever the spoon comes near. She's also started spitting food out and taking it out of her mouth with her fingers too. It's incredibly stressful for me but she's just not ready to manage feeding herself exchanges (protein) yet. She's still only has 2 teeth! She can play about and feed herself all the protein free finger food she likes, but she's going to have to put up with me feeding her protein first for a little longer yet. It's a horrid battle of wills and I'm back to weighing, re-weighing and re-calculating every meal. Just to make it worse Moomin gets intolerably worse when Gremlin plays up. She's a drama queen at the best of times but when all the attention is on Gremlin she ups her game too. She's gone to bed tonight with hardly any dinner eaten and no pudding as punishment. Humph.

Pea Pesto

Another PKU Mum friend shared a wonderful recipe with me. It is easy to make and can be frozen in 1 exchange portions for a quick fix dinner. Most importantly though, Gremlin absolutely bloomin' loved it. She was getting cross at me because I wasn't shovelling it in quick enough. It is originally taken from the NSPKU magazine 'News and Views'. Thank you so much for sharing Ruth! It also gives non-PKUers a little insight into the complicated maths involved in PKU life (and this is an easy one!).

Pea Pesto

Ingredients
1 x tablespoon garlic infused oil (available in all supermarkets)
150g x frozen peas, weighed after cooking, reserve a little of the cooking water
Squeeze of lemon juice
Handful fresh basil, if you have it
Salt and Pepper to taste

Method
Place all the ingredients in a liquidiser or food processor, adding a little of the reserved cooking water if the mixture seems too dry. You are looking for a moist paste. Taste and add more lemon juice, garlic oil, salt or pepper too if you think it needs it. Now, using a spatula, scrape out the food mixer and weigh the entire mixture. Divide this amount by 6 and this number equals the weight of one exchange of the pesto. For example, your pesto mixture might weigh 180 grams. 180 divided by 6 is 30 so 30g of your mixture would give you one exchange. You divide by 6, because you have used 150g peas in the recipe and 150g of peas equal 6 exchanges. When you get used to this , you might use more or less peas depending on how much pesto you want so adjust your sums accordingly.

End Result: YUM.

Can be served with prescription bread/toast (ie crostini thingy) or pasta. Non- PKUers might like it with regular pasta and parmesan.

Say Cheese!

Gremlin cannot eat cheese. Well, she could eat some cheese as an exchange but such a teeny weeny amount that it's just not worth it. I calculated it the other day. For 1 exchange she could have 4g of cheese. Have you ever weighed 4g of cheese? I did. It is TINY. A mouse would be disappointed with 4g.

Jacky, one of the GOSH dieticians, had told us about Redwood Foods and their range of 'Cheezly' vegan cheese. It has much lower protein levels than regular cheese and would mean that Gremlin could have more volume. I thought about it then promptly forgot. I'm ashamed to admit that whilst reading a Daily Mail article about Heather Mills and her vegan restaurant I remembered. 30g of Cheezly ("cheddar", "edam", "gouda" and many more) is the equivalent of 1 exchange.

I managed to track some down in Holland and Barrett and today offered Gremlin a full cheese exchange. To me, cheese monster that I am, it did not resemble cheese, but to Gremlin it was very tasty. She ate the whole lot. Moomin tried it and she quite liked it too, which I was not expecting but am very pleased about!

I was also excited to find that my favourite veggie pate (I am vegetarian), which is also purchased from Holland and Barrett, was only 7.5g of protein per 100g so could well be another exchange idea as a sandwich filling. I measured 1 exchange (13g) and spread it on one of her protein free crispbreads with which she is so taken. It was an almost total fail at the first hurdle. She didn't like it at all. Oh well, all the more for me for now and I quickly weighed out an alternative exchange of Sweet Vegetables with Pasta as lovingly prepared by Heinz.

(Oaty) Crunch Time

Well today it happened. The thing I have been dreading (well, aside from the carraway seeds incident last month!).

Gremlin ate something that she shouldn't have. We were in a park and Moomin was off playing. I turned my back for 30 seconds to check where she was and in that time Gremlin stole some oaty biscuit thing from her new little friend Mario. Mario's Mummy said, "Oh, she's gone for the healthy option" and I spun round like lightening to dig it out of her mouth. Gremlin had been eating one of her prescription wafers (which look like a regular sugar filled one) and is something I wouldn't have dreamed of giving Moomin at the same age but anything with protein in is not the healthy option for Gremlin. I don't think she ate much, but I cannot be absolutely sure.

It's got me thinking that I should tell everyone about her PKU whenever food is on the scene, which is pretty much all the time with babies, toddlers and pre-schoolers everywhere we go. I've been trying not to make PKU the first thing people know about her but it's going to have to be, for a while at least.

Baked beans!

A real staple in our house.

20g of baked beans = 1 exchange.

This is approximately 12 beans. It's tiny! I suspect when she's bigger Gremlin and I will have lots of disagreements about lack of beans. However, right here right now, it is the perfect amount for Gremlin to cope with. Last night I added 30g to some of her homemade ratatouille to provide 1.5 exchanges and she loved it.

A quick and easy way to get protein in, for now!

Animal Magic

Chuffed to bits with some messy animal pasta! It looked so tasty Moomin insisted on having some too.

Clever Moomin

The vanilla wafers have been a definite hit for Gremlin. Moomin has tried them too and approved. She is becoming increasingly interested in Gremlin's food and special tummy. Without prompting she asked me tonight if she could look at the 'pwoteen' of Gremlin's food. I showed her the packet and pointed to the protein content line. She nodded wisely and said, "Good".

I've also heard her playing and talking with her toys about protein. We do mention Gremlin's special tummy that works in a different way to ours but we don't talk about it much beyond that. She's also started to talk about it at pre-school and completely confused the teachers there! I've had to give a 'beginner's guide to PKU' to them, as they had no idea what she was talking about. I suppose that will save me a bit of a job when Gremlin starts there herself in a couple of years!

Someone suggested today that 'special tummy' is a strange phrase to use and may make Moomin feel like she is not special. I don't know. It is very hard to keep everyone happy and find appropriate ways to explain things to a 3 year old. As much as I don't want Moomin to feel un-special, I don't want Gremlin to feel too different either. I do think Moomin 'gets' it. She certainly knows that her tummy works the same way as Mummy and Daddy's, and she knows that there will be lots of her food that Gremlin can't eat because of her special tummy.

We're going to need a bigger kitchen

Our wonderful chemists, for who nothing is too much trouble, phoned to tell me that Gremlin's first protein-free prescription food delivery had arrived and was ready for collection.

I strolled up there with Moomin, Grandmamin and Gremlin in the buggy thinking that we could juggle it between us and the buggy. I was expecting one loaf of bread, 3 packets of wafers, some puddingy things and some pasta boxes. This is what we were given:











I don't think the picture gives away the true scale. There are 6 loaves of bread, 12 packets of vanilla wafers, 1 box of penne pasta, numerous packets of puddingy things, some extra snack things from the manufacturer to try, and an entire tray of the all purpose mix (to make cakes, bread, and other things I don't even know about yet). This does not include animal shape pasta and cake mix! I had to go back with the car to cope with it all.

As this is our first order I have no idea whether this is normal or not. Perhaps for an adult? I am kind of hoping that the lovely chemist has got their numbers a bit wrong and ordered 1 'crate' rather than 1 'packet'! I know that Gremlin is their first and only PKU patient, so they are learning with us.

Meanwhile, as Gremlin's PKU Start milk delivery of 6 boxes is coming tomorrow, we are definitely going to need a bigger kitchen!

BOGOF

We were back at GOSH today for our Stage 3 weaning chat, but also got Stage 4 thrown in for good measure! BOGOF if you like!

I am going to blow my own trumpet, which is not like me but I am very very happy, as the reason for the BOGOF is due to how well Gremlin has done thus far. Much of today's chat should have been about protein free finger food, which (avid readers) you will already know we have been doing all by ourselves for quite some time! We're even onto protein providing ones, so the dieticians were really pleased. They had a live demonstration as we ran out of time to eat lunch before our appointment, so Gremlin noshed down some gel, lasagne (2 exchanges), veg curry (protein free) and cucumber sticks whilst we were there, with no fuss whatsoever. She really is a superstar.

I've now got more protein providing foods to add to our range, and prescriptions ready to hand in to the doctor's tomorrow to allow me access to bread, pasta, desserts and cake mix for Gremlin. Woohoo. I'm really excited to be able to offer her some more variety. Importantly (after today's epic journey involving cancelled and diverted trains and crazy heat) we do not have to go back to GOSH now until she is 1.


:-)


p.s I am hugely relieved that Jacky confirmed that chopped tomatoes and passata are 'free', as my new PKUrecipes friend suggested, despite saying 1g per 100g. Some items are measured by the NSPKU on the actual phenylalanine levels, rather than just protein. So the tinned tomatoes protein is ok protein for Gremlin. Easy life!

A typical day's food - 8 months

Just to share, for the record.

Gremlin is eating well and enjoying her food again. I have overcome the stalemate of spoon feeding hell by offering finger foods at every meal. This enables me to get the enforced spoons of gel and protein in before letting her play with the protein free bits and bobs. She seems to know what's coming when and always expects her gel and protein first, as that is the way we always do it based on GOSH advice.

First thing - 100ish mls PKU Start formula

Breakfast- 1 sachet gel (spoon fed)
28g Farleys Rusks mixed with PKU Start milk (spoon fed) - 2 EXCHANGES

She usually has a long nap in the morning so rarely has a snack or drink at this time.

Lunch- 1 sachet gel (spoon fed)
54g Hipp Organic Vegetable Lasagne (spoon fed) - 2 EXCHANGES
Home made ratatouile, sweet potato and parsnip (spoon fed if allowed)
Cucumber sticks (finger food)
Nectarine (finger food) and strawberries (finger food)

Snack- 7g = 3 Organix Rice Cakes (finger food)- 0.5 EXCHANGE

Dinner- 1 sachet gel (spoon fed)
Home made tomato, carrot and basil with 18g petit pois (spoon fed)- 1 EXCHANGE
Additional plain tomato, carrot and basil until satisfied!
Sweet Potato wedges (finger food)
Organix fruit pot (spoon fed if allowed)
Plum, pear or kiwi (finger food)

Bedtime- 90mls regular formula (1 EXCHANGE) followed by up to 150ish mls PKU Start formula

And relax..........!

Recipes

It's 283. Which is perfect. So there! Still, lesson learned.

I have made 2 other protein free recipes lately which have been very well received.

Ratatouile:
1 aubergine, 2 courgettes, 2tbsp olive oil, 1 large onion, 1 clove garlic, 1/2 green pepper, 1/2 red pepper, 7 tomatoes (skinned, deseeded and chopped), 4floz veg stock, 1tbsp fresh basil.

Salt sweat sliced aubergine if you fancy it (I did but regretted it as the dish tasted too salty afterwards). Chop aubergines, courgettes, onion, garlic and peppers. Heat oil , add onion and fry gently until softened but not brown. Add garlic, aubergine, courgettes and peppers, cover and cook gently for about 30 mins or until tender. Finally, add the tomatoes, veg stock and basil and simmer, uncovered for another 30 mins. Mash/whizz up a bit as required.

Very, Very, Very Mild Butternut Squash Thai Green Curry:

There is some protein content in the ready made curry sauce jar, but so little is used that it is effectively 'free'.

10floz veg stock, 1 butternut squash (peeled, deseeded and cubed), teeny tiny dash from jar of thai green curry sauce (WATCH PROTEIN CONTENT), 4oz cherry tomatoes (halved), 2oz green beans, 3 shallots or half an onion (chopped), garlic clove (thinly sliced), teeny tiny bit of coriander (chopped)

Add veg stock and teeny tiny dash of curry sauce. Bring to the boil and simmer for 5 minutes. Add butternut squash, green beans, onions and garlic and simmer for 30 mins. Add tomatoes and cook for a further 5 mins. Add teeny tiny bit of coriander. Mash/whizz up as required. Amount of coriander can be increased as they get older.

I will share the Butternut Squash and Red Pepper Stew recipe but need to work out how many caraway seeds I can add but still enable it to be 'free' first.

A word of warning

I am an idiot. I found a great recipe online - Butternut Squash and Red Pepper Stew - all seemingly protein free. Having read in my GOSH blurb that all herbs were protein-free (and stupidly jumping to conclusions about all spices, flavourings etc) I gaily added some caraway seeds, which had no nutritional information on their jar. The stew was delicious and Gremlin really enjoyed it. But something made me think about it later. I checked online and caraway seeds contain 19.77g of protein per 100g. That is quite high. I worked out that I added 3 exchanges worth of caraway seeds to the whole dish. It did make dinner for me, Daddymin, Grandmamin and Moomin aswell as Gremlin, so she probably didn't even have half an exchange-worth by the time we'd eaten our bits but I am so very cross at myself. I have certainly learnt my lesson. We await her blood test result to see if it has had too detrimental an effect on her phenylalanine levels.

Da Dum Da Dum

0.01g of protein per wafer!!!!!!!

Oooooooooh!!

That extra half an exchange has inspired me. Whilst Moomin is at pre-school, Gremlin and I peruse the baby snack aisle in the supermarket. I am beyond excited when I discover that 2 staples of Moomin's snack options at a similar age can easily be half an exchange. Approximately 6 Organix Carrot Sticks or 3 Organix Apple Rice Cakes and bob's your uncle.

Gremlin LOVED the rice cakes as you can see:

More protein!

An exciting day.

Gremlin's blood test result has come back and it is the third one in a row which is at the low end of normal. Today Jackie, a GOSH dietician, suggested that I give her and extra half exchange (half gram of protein). This means she will, in total, have 6 and a half exchanges (6.5g protein) per day. It may not sound like much, and it isn't really, but it just gives us a bit more protein to play with and eases the strictness of her diet ever so slightly.

Currently 2 of her exchanges are still comprised of regular 90ml formula feeds. Jackie also suggested we drop one of these. So from tomorrow she will have 5 and a half exchanges provided by food.

We also got the date for her Stage 3 weaning chat for next week. This will mean we can start to get in prescription food for her and I will be able to give her things like bread. A lot of her contemporaries are eating toast and sandwiches and she looks so longingly at my breakfast that I am relieved to get to this point. Bread is such a great finger food for an independent little lady who wants to feed herself!

PKU Chilli! Yippeeeee!

Lots to report on tonight!

Firstly, inspired by all the other PKU babies we know (2 in total!) who take it plain, Gremlin had 2 sachets of gel today without our trusty Nesquik. When we last tried it plain 2 months ago, she wasn't having any of it. Today though she took it with no qualms whatsoever. What has changed? No idea, perhaps Michelle the dieticians theory about taste buds changing holds up. Anyway, it makes life much easier and is one less thing to have to remember when we are out and about.

Secondly, Gremlin ate her first proper PKU meal type exchange. I chanced upon a tremendous website: http://www.pkurecipes.com/ and thought I would give the Chilli Sin Carne a go. I love chilli, so was really pleased to find I could make a version for Gremlin. I calmed down the heat for her and just used paprika and oregano, as well as only 50g of chopped tomatoes (which worked out to 0.5g of protein as I do not still understand why tomatoes are protein free fresh but appear to have 1.0g protein per 100g when tinned or in passata) then bulked up with more water. It smelled great. Then I think I did something a bit silly and chickened out of adding rice for protein (fearing 45g (1 exchange) would be too much volume for her) and instead added 25g spinach (1 exchange) and 18g petit pois (1 exchange) both of which I happened to have in my freezer. I whizzed it up a bit but kept in lots of lumps. It still smelled great but didn't really resemble chilli anymore! I weighed it (128g) and halved it to make it 2 lots of 1 exchange. Gremlin wolfed it down! In fact it was a big hit two days in a row! I will make it again next week and be brave and use rice. Thank you so much to PKU Recipes for fantastic inspiration!

Lots of roast veg offered this evening following her gel and protein (32g Ella's lovely lamb):

Sweet Potato :-)
Red Pepper :-)
Courgette :-/


Steamed broccoli (one portion per day is 'free') was not a hit. At all. :-(

The highlight of the meal though was steamed asparagus! She loved it!

Carry on PKUing

We've been on holiday! A week in the Isle of Wight and it's been great. Aside from the mass stash of PKU gel sachets and big box of PKU Start milk it really hasn't been difficult at all. We even managed to do a blood test, pop it in the post and get a result back on the phone the very next afternoon. This is often quicker than when Daddymin takes one in to GOSH in person!

Some photos to sum up the holiday:

Hipp baby









PKU on the beach











Gnawing on a nectarine in a very posh restaurant











Happy Days :-)

We are finally lurgy free and I'm back on the weaning bandwagon. I've been researching Vegetarian and Vegan weaning for ideas and am continually amazed by how much protein is in a regular diet. There are lentils and potatoes all over the place! I've had some absolutely brilliant ideas from my lovely, lovely veggie friend in Slovakia who has been forced to become the 'Queen of Unusual Vegetable Cooking' by virtue of the fact that Slovakia really isn't very vegetarian friendly. I've even bought a Kohl Rabi from a local Turkish supermarket based on her advice! (Look it up if you don't know what it is!).

We ate out at lunchtime and, for the first time, I was asked by someone why I was weighing Gremlin's food. She wondered if it was a new fad. I explained what I was doing and she was lovely and very interested. I'm still a bit self conscious when we're out and about as I can feel people watching while I sort out Gremlin's gel and food but that's my problem and we have to make it as normal as possible for her.

This is Gremlin tonight after 2 exchanges of Vegetable Lasagne by Hipp Organic, followed by a free for all on a little bit of steamed cauliflower (contains a small amount of protein so she can only have one portion per day as 'free'), streamed carrot sticks then a strawberry and some mango to gnaw on. Not a huge amount went in but she loved it!

The lurgy

Urgh. We have a house of lurgy. Moomin brought home an evil tummy bug from pre-school and has passed it on to Daddymin and now Gremlin. Everything she eats has come back up, and she has no real appetite anyway. Aside from the disgustingness of it all and having a poorly baby, there is more concern for Gremlin as this will have terrible impact on her phe levels and the other nutrients she needs as she is not taking her gel either. Hmmm... I think we just have to ride it out but might phone GOSH for a bit of reassurance.

Cucumber!

Part of the gang

Today Gremlin really, really enjoyed 70g worth (2 exchanges) of Hipp Organic Turkey, Vegetable and Cranberry Dinner. It was quite lumpy and bumpy and it was a joy of a lunch at Nana and Grandpa's house. She also really enjoyed the strawberries that had been set aside for her for pudding by Nana. I mentioned in passing last week that she could eat strawberries (protein free) and Nana remembered it. This was also fan-bloomin-tastic as she was part of the meal that everyone had. It was lovely.

Also, I want to explain a little about the fact that we are giving Gremlin jars/pouches with meat and fish content as 2 people have asked me about it this week. It is confusing as it goes against what she will eat as a growing child and adult and we were intially advised not to let her taste meat or fish in order that she doesn't develop a liking for it and miss it later. However, at the moment, it's all about volume. Her portion sizes are still relatively tiny. In order to get the desired amount of protein into her using vegetables or fruit only she would have to eat much more than she can manage. Hence, as advised by GOSH, we are going for things with high protein content, particularly beef and chicken. As the amount she eats increases the meat and fish will disappear from the menu.

A breakthrough, of sorts

I'm very happy. Today Gremlin eats a whole exchange worth of something I made. It was mashed butternut squash (protein free) and 18g of petits pois. Not whizzed or glooped (see previous posts) but just mashed a bit. Hooray :-)

Lumps and bumps - no bother I can chew!

Al Fresco dining in the kitchen and Gremlin enjoys a bite of rice pudding - 34g of it to be precise.

Progress

Strawberries!

Sweets for my sweet

A better day today. I have followed 2 main principles- 1. Offer Gremlin more sweet things, as it's what she likes, and 2. Don't worry about offering Gremlin more sweet things- it is more important that she eat her exchanges than anything to do with variety and sweet/savoury. The same rules do not apply in a PKU diet. All in all I manage to get all 4 exchanges and 3 sachets of gel in without too many meltdowns, at least not food related ones (pesky babies), or re-weighing and juggling. As if that wasn't enough I also get her to eat something I make, and she actually looks like she enjoys it.

Breakfast- PKU Start milk with 14.1g of a 17g Farley's Banana Rusk (1 exchange)
Lunch- 66g of Pasta Bolognese disguised in Plum Banana, Blueberry and Vanilla (2 exchanges). I had set out for these to be main then pudding, but it became clear that the Bolognese was not as popular as it had been the other day and by making one big meal (although not mixed together as I'd still need to weigh what she didn't eat of the Bolognese, just both on a spoon) we achieve success.
Dinner- Butternut Squash and Pear (homemade!!!!!!) and 38g of Vanilla Custard (1 exchange)

Job Done!

Something else that Michelle mentioned yesterday which I meant to comment on was the fact that Gremlin's taste buds will be developing differently to ours. What tastes nice to me or her sister may not taste nice to her. An example is the ghastly PKU gel, which to me even hidden within Strawberry Nesquik is hideous, but is wolfed down by Gremlin most days. Older PKU children at the clinic have surprised the dieticians when they are not impressed at a new PKU food!

The Battle Of Sweet Tooth

Mealtimes have slowly deteriorated further. She is screaming before getting into her highchair and every protein meal is resulting in 3 or 4 alternatives and then juggling exchanges throughout the day when she doesn't finish them. Yesterday, at a dear friend's house for lunch, she pulled out a new trick where she down right refused an exchange she'd really enjoyed the day before. I'm finding it really hard, so I'm excited to be heading back to Great Ormond Street for the Stage 2 weaning chat.

We are supplied with lists of further 'free' foods including all kinds of fruit and vegetables I've never heard of. Bilberry, mangosteen, medlar or mooli anyone? Sounds more like a 'Round the Horn' skit from Rambling Syd Rumpo to me and I'm not sure where I'd find such things in our pocket of white van man Hertfordshire. Still, I think I've got a new mission. We can also increase the foods we are offering her with protein in. Although we will be jumping ahead, Michelle hears the somewhat desperate tone in my voice and says that milk (30mls = 1 exchange) and yogurt (unknown amount) could be ways to get protein into her and appease her sweet tooth. Snack exchanges such as rusks could also help and can be introduced now.

We also agree to drop Gremlin's 11 o'clock and 3 o'clock bottles. She has not really been interested in either since we've started weaning and is now not finishing her regular formula (protein supplying) ones. Instead we will up to 4 exchanges a day, and 3 sachets of PKU Gel.

Michelle points out that she is probably picking up on my stress. I know this but have no idea how to improve things on that count. I am undeniably stressed. In addition, and Daddymin will tell me off for expressing it in this way, there is a comment about her weight. Gremlin has piled on the weight since she was last weighed and jumped a whole centile. Because Gremlin is not yet mobile, all the additional calories from the carbohydrate heavy non-protein foods are showing. This should just drop off once she starts moving. In the meantime though, it is just another thing for me to worry about.

Breaking the rules

This weekend we've been away to a wonderful wedding in the New Forest. We take with us the one protein food that Gremlin has enjoyed and it works. She loves Pasta Bolognese and it is snaffled with no fuss. Unfortunately the pretty little dress she is wearing for the wedding does not survive, but she eats the meal and no alternatives are needed. This isn't so bad.....

Today though, we're back to square one. First offering - Lovely Lentil something or other from Ella's kitchen- declined. Second - Hipp Organic Creamy Parsnip, Potato and something else- tasted and considered for 2 mouthfuls but then declined. Third- strange looking blue Heinz tin thingy of Tomato, Beans and Bacon - accepted with gusto. Gremlin and I are breaking all the rules: she does not like home cooking and prefers the cheaper and 'less natural' brands of jar/pouch/tin while I will offer her lots of different foods until something is properly eaten. Between us I hope we are getting there though.

By hook or by crook

I've been tearing my hair out a bit.

Gremlin has refused to finish every 'protein' meal since Monday, and has been angry and shouty throughout meals. Moomin has been playing up at mealtimes a bit too due to all the attention Gremlin has been getting.

Daddymin says, "Don't Worry", but I do. A LOT.

With a lot of cajoling, stealth spoons as she opens her mouth for a sip of water, trains, planes and automobiles landing at the airport and going in the tunnel combined with maths and exchange swaps throughout the day we manage to get 2 exhanges into Gremlin every day. But by goodness it is hard work, and I spend most of most days worrying about how to achieve it. I think the biggest problem is that Gremlin wants to actively participate in her food and wants to do things for herself. She's very happy when she can pick up her Tommee Tippee cup and drink some water herself.

I know I shouldn't but I keep thinking back to weaning Moomin and how lovely it was when it just didn't matter what or how much she ate. She could just play with food- some went in and a lot went on the floor. Gremlin must eat very precise amounts so I can't just hand her the spoon to have a go herself but an empty spoon just doesn't seem to cut it for Gremlin. She's also really bored of ripe banana and pear to gnaw on herself.

I am really looking forward to our appointment at GOSH on Wednesday to learn about some other foods I can give Gremlin and hoping things improve.

Unfortunate Gloop Incident

Left - 55g of plain mashed potato (1 exchange) and 18g of petit pois (1 exchange)
Centre- plain mashed swede and carrot batons (protein free)
Right- williams pear (protein free)

I shall start with the success. The pear! Cut it into chunks and it is so deliciously ripe and juicy that it just falls apart in her mouth. She loves, loves, loves it. He's a slipperly little sucker though and it is a manual dexterity test for both of us!

Before that though, I whizz up the potato and peas together to create 73g of protein and 2 exchanges. This is officially 'not a good idea'. It turns into a bizarre green gloop and Gremlin is not at all impressed. It is a real struggle but eventually she takes 30g worth. We know this because I send Daddymin off to re-weigh. This is not even 1 exchange. She tries a bit of swede and seems to enjoy it and also gnaws on some of the carrot quite happily, but as these are protein free this does not help the exchange quandry.

I set about more brain squeezing maths to try and work out what to do to get the rest of the protein into her. It will have to be an alternative exchange for dinner, but what about that extra bit? I work out (eventually) that she ate 82% of 1 exchange. I need to make up the remaining 18%. I decide to go back to jars for dinner and mademoiselle will 'ave zee Organix 'Wholegrain Rice, Chicken and Apple' (oooo la la) which contains 2.0g of protein per 100g. So 50g is one exchange, and 18% of one exchange is 9g. She slowly but surely takes the 59g and I'm pleased and relieved.

The moral of the story is....... DO NOT COOK and WHIZZ! I loved cooking for Moomin, who took to food with great gusto and enjoyment. However, Gremlin is a very different kettle of fish and the limited rules/options available to us mean that jars are the best bet for her at the moment I think.

A mind of her own........

Today Gremlin decided she didn't like what she was offered for lunch and my underlying stress levels are rising!

I'm still experimenting with jars and pouches to provide her 'exchanges' while I get to grips with it all. For lunch Daddymin offered Gremlin some 'Vegetable Medley with Sweet Potato'. This was not acceptable! It was a long hard slog to get 1 exchange worth (55g) into her, and we decide that we will not push anymore on her but instead give an alternative exchange at dinner time.

We eat out for dinner, as a treat to Moomin (and us), so take the trusty digital scales along with us to Pizza Express. Whilst Moomin tucks in to a lovely pizza, Gremlin eats 33g (1 exchange) of 'Pasta Bolognese' with lots of mess but little fuss.

Daddymin and I decide that it is probably best to give Gremlin exchanges with higher concentration of protein so she has to eat less volume before we know she has had her exchanges and my stress levels do not climb so high.

As an aside, we sit down in cafe this afternoon and find a balloon just there waiting for us. It gives a wonderful message and actually makes me feel much better about PKU and the future, just as I have been worrying about it all the most......

Maths Headaches

Gremlin's levels are up again (426) and GOSH want us to start introducing protein now. Not on 12th May as I've been expecting but now. Today. Gulp!

Michelle, the dietician, explains everything over the phone whilst I frantically scribble and try to understand. 1g of protein is equal to 1 exchange. Gremlin will have 6 exchanges per day. This will eventually replace all her regular formula bottles and enable her to have exactly the right amount of phenylalanine that she can manage.

To start we will introduce 2 exchanges during her lunch and drop her 3pm regular formula feed.

For homemade scran 1 exchange = 80g plain mashed potato, 55g avocado, 25g peas or 25g spinach.

For jars and the like = amount of protein and exchanges must be calculated according to protein in grams per 100g and the size of the jar. For example- pouch thingy contains 4.0g of protein per 100g. 100/4=25 so 25g of pouch thingy = 1 exchange, 50g = 2 exchanges etc. Pouch thingy is 125g so 50g must be weighed out precisely by digital scales.

We have already changed plans once today (for fear of passing on lurgy to heavily pregnant friend and her son) to meet Grandmamin at a cafe for lunch (we don't mind passing on lurgy to Grandmamin!). I decide to bite the bullet and go for it at lunch. I put our digital scales in the change bag, along with all the usual protein free lunch paraphenalia, and decide to see what we can find in the cafe to provide the 2 exchanges.

Once there I find an Ella's Kitchen "Chicken Something or Other" pouch which has the protein as broken down above. Gremlin has her PKU Gel first then I measure out 50g of the pouch on my scales. I can feel people looking but try to act like we are doing nothing at all unusual. The trouble comes when Gremlin appears to actively dislike the "Chicken Something or Other" and whatever I spoon in immediately comes back out again down her chin and bib. Michelle did not tell me what to do in this situation! I panic a bit (Do I find something else protein free and do the 3pm regular formula feed? But she's had some, how much has she had? Can I weigh it again? Then how much milk should I give? Aaaaah?), but persevere and eventually get Gremlin to eat all 50g. The contrast when I offer her a protein free strawberry and apple pouch for her pudding is incredible- snaffled in about 2 minutes flat- she definitely has a sweet tooth.

On the way home we pop into Tesco to buy potatoes and avocado but also to look at the other jars/pouches and that's when the headaches begin. Each jar is a different weight, and each jar has a different protein per 100g content - 3.6g, 1.8g, 4.2g, 0.6g etc etc. I'm going to be doing an awful lot of maths and carrying those digital scales everywhere .................

Parsnips Schmarsnips

I don't think Gremlin likes vegetables much. Quite ironic as her mother is a vegetarian. She enjoyed trying to pick up the parsnip but her pursed lips as it approached her mouth suggest she is not terribly keen on the taste.

In stark contrast she REALLY liked the look of the iced fingers that me, Moomin and Grandmamin ate this afternoon! I have no idea how many exchanges they are but think I will need to find out......

Oh la la

Oooo oo oo oo! Another new pouch to try! 'Blueberry, Banana and Vanilla' has 0.5g of protein per 100g and is made by Plum. This makes me happy as Moomin ate a lot of Plum ones too. Gremlin is pleasantly surprised (it really is lovely- Moomin and I try it too) and it is snaffled very quickly.


Job Done.

Party Party Party!

Today has been a bit special. For a start, it's my birthday! And second, we went to a brilliant party. Not for me, but for PKU families. We met (some for the second time) a 3 year old girl, an 18month-ish year old boy and an 8 month old girl with PKU and all their siblings and parents. It was great and I hope that they will become friends for us all, especially Gremlin when she is older.

All the children were fantastic and it was so reassuring to see that. It would have been impossible to tell who had it and who did not.

I also learnt a lot more about exchanges. 1g of protein is 1 exchange and all the children were on different amounts based on their own blood results - 10, 6.5 and 6. We don't know yet how many Gremlin will have but her dietician hinted it will be around 5. Quavers are half an exchange, Hula Hoops 1 exchange and Pom Bears about 2/3rds! That's snacks sorted anyway!

Gremlin enjoys a touch of al fresco dining

I run out of time and fresh fruit so don't get chance to prepare Gremlin any chunks of food today, but let her have her first meal outside, thanks to the arrival of our looooooooong anticipated garden furniture and our good friends round for lunch.

Also GOSH phone and tell me Gremlin's phe levels have dropped from 570 to a perfect 271.

Today has been a lovely, happy, sunny day.

Banana(wo)man

Success. Lots of gagging but a very happy Gremlin and I'm pleased to have found a way to make eating a bit more fun for her at the moment.



See www.babyledweaning.com for more advice on this sort of eating.

Gremlin weaning cannot be fully baby-led but a bit here and there goes a long way!

Hey Mango Mango Italiano......

Gremlin is 27 weeks now and a bit bored. We are still sticking to our short vegetable and fruit list:

Banana, Mango, Apple, Pear, Peach
and
Green Beans, Swede, Sweet Potato, Parsnip, Carrot

as well as the prescription rusk, porridge and various jars/pouches of mainly fruit.

In a bid to liven things up a bit I cut up a large chunk of very ripe mango and let her play with it. She picks it up and starts sucking. None of the mango breaks off or is eaten but she has enjoyed a more participatory lunch and I will see if I can do similar with something else from our list tomorrow.

25 weeks - The first bottle starts to drop too

I am thrilled that Gremlin is really enjoying eating. She is now eating 3 meals a day. A typical menu would be:

Breakfast- 'Hot Breakfast' porridge with mushed banana
Lunch- Aminex Rusk with warmed PKU Start milk followed by half a jar of fruit puree
Dinner - 4/5 ice cubes worth of pureed vegetable then remainder of fruit puree jar

In addition she is still having 4 sets of bottles a day. More often than not she takes no PKU Start milk in her second bottle at all. I am now giving her 2 sachets of gel per day and offer some before each meal.

However it seems she has almost taken to food too well as this week she starts to refuse to finish her first bottle. This bottle contains regular formula and is essential to give her the small level of phe she needs and can manage. Eventually measured amounts of food containing protein will provide this phe. They are known as 'exchanges' but we are not due to learn about them until our Stage 2 weaning lesson at GOSH on 12th May. Although it is a struggle, we do manage to get all the necessary formula into her by adding to later feeds/extra night time bottles but I phone GOSH to ask what we should do if we cannot one day, as the 12th May still seems like forever away. They reassure me that should it come to that we can introduce some simple exchanges which they can teach us about over the phone. Phew and roll on 12th May.

I love Ella's Kitchen

It soon becomes very clear that Gremlin does not appreciate my hard work and much, much prefers shop bought food. Humph.

With 2 boisterous girls I do not get much time to stand still in supermarkets and read labels but in the odd snippets of time that I have I find that there are lots of Stage 1 fruit purees which are 0.5g of protein or less per 100g. Her favourites turn out to be red ones - blueberries, strawberries, raspberries included. Top prize goes to Hipp Organic - Red Fruit and Apple Compote.

I keep trying to find savoury options to no avail. Then I spy a bright orange pouch in the corner of the baby food aisle. Ella's Kitchen 'Carrot, Apple and Parsnip' contains 0.4g of protein per 100g. We can now go out for lunch! We put it to the test at a soft play with friends in Enfield. Whilst Moomin is off playing, I am able to prepare and serve Gremlin's gel for her starter, Ella's pouch for her first course then Hipp jar for her pudding. Bless her she takes them all at room temperature and things again seem manageable.

Adjusting the milk and starting the gel

Gremlin has dinner 3 days in a row before we start to see an effect. She has more carrots (hmmm... still not sure) and parsnips (ok!) in this time. On the fourth day she takes much, much less of her second bottle, the PKU Start (the one with the phe removed but containing lots of other essential nutrients that she needs), than she has since she was a newborn.

On Day 5 she has lunch (a special rusk mixed with warm PKU Start- yum) and dinner (sweet potato and parsnip- ok) and drops even more of the second bottle throughout the day. This continues and by Day 7 I am worrying. I phone GOSH and they tell me I need to get her to take her gel, as this will eventually replace the PKU Start milk and provide her with everything she needs minus the phe.

I need to aim to get 1 -2 sachets into her each day. We've been given 'unflavoured' sachets as the flavoured ones are not licensed for infants under 12 months. To her eternal credit Gremlin gives the unflavoured unflavoured sachet a go. Maybe 2 spoonfuls go in. After that she pulls a face which I now know to mean "Yuck and No". I try the unflavoured unflavoured gel and pull the same face. It is almost peppery and very unpleasant. We try to disguise it the next day in fruit puree. The fruit puree flavoured unflavoured gel is more successful but not much. I phone GOSH again and am told about a great secret. Nesquik. I can flavour the unflavoured gel with banana or strawberry nesquik! Immediate success! The nesquik flavoured unflavoured gel is a real hit and I worry a little less for a while.

23 weeks - Carrots

By 23 weeks she is very, very interested in what we are eating and sitting up well. The time has come to begin the daunting PKU weaning process.

Moomin's first taste of food was carrots, so I think it only fitting that Gremlin has the same. She's chuffed to bits to be sitting at the table and knows exactly what to do as the spoon approaches. She still looks pleased as the carrots go in, but then they are considered and she seems rather unimpressed....

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