Thursday 27 May 2010
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.
Tuesday 25 May 2010
Sunday 23 May 2010
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.
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.
Saturday 22 May 2010
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 :-)
Friday 21 May 2010
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.
Wednesday 19 May 2010
Friday 14 May 2010
Thursday 13 May 2010
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!
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!
Wednesday 12 May 2010
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.
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.
Monday 10 May 2010
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.
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.
Thursday 6 May 2010
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.
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.
Monday 3 May 2010
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.
Saturday 1 May 2010
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......
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......
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