About Me

Hertfordshire, UK
I am a very lucky Mum to two beautiful daughters, known here as Moomin and Gremlin. My second gorgeous girl, Gremlin (above), has PKU (Phenylketonuria) and has introduced us to a whole new world! This blog is intended to record our journey with regards it, particularly focusing on food and eating.

Thursday, 21 April 2011

18 months and new challenges

Long time no post. Gremlin is now 18 months!

I haven't deliberately been quiet, but just not really had much to say. Our PKU journey continues, and I am pleased to report I have had some days where it is all just second nature and not too much bother at all, with just a little planning. I can really see how far we've come.

We do have 2 new challenges now however. Firstly is Gremlin's growing self awareness and realisation that she has her own thoughts and opinions. She is a very 'purposeful' soul (to quote Grandadmin) and knows what she wants and woe betide you if you try to feed her something she doesn't want. She finds it very difficult to calm down out of a temper and this can completely ruin a meal. Secondly is her growing sociability and keenness to eat what everyone else is having, and curtailing other people giving her things which she cannot eat without, whilst trying hard not to make too big a deal of PKU all the time for her.

I'm not really sure whether we're doing it right, but we are muddling through as best we can. I am very lucky to have some wonderful friends and family who are determined to include Gremlin, and provide food for her which is suitable with no fuss whatsoever. I am very much looking forward to Easter Sunday when Nanamin will give Gremlin a PKU Easter Egg which she has made for her, completely of her own volition.

Happy Easter Everyone.

Thursday, 24 February 2011

Ice Lolly

A forced hand special treat! Moomin had an ice lolly for her pudding today (bribery and corruption) so Gremlin absolutely and totally rejected her kiwi. Nothing would pacify but her own lolly. Luckily, I had some fruity ones in the freezer (protein free) and let her at one. She completely ignored my protests about her hands and mouth getting cold, and refused to put it down. She watched her sister and was a complete natural!

Here she is warning me off it:



It's a serious business!

Thursday, 10 February 2011

Whoop Whoop

Tonight we had the best tea we've had in ages.

She ate 22g rice (half an exchange), 25g peas (1 exchange) mixed in with some homemade vegetable curry (protein free). It looked huge and I thought she'd only eat half then I'd have to work out what she'd left and try and figure out what else I could find for her, but I needn't have worried. It was completely snaffled. Happily.

Whoop whoop indeed.

Tuesday, 18 January 2011

Dining on the go

Another trick...

Daddymin unexpectedly arrived home early so I had extra hands around at teatime. Because I didn't have Gremlin hanging off my leg screaming at me I was able to make up her gel and weigh out her protein providing food (sometimes still a jar- tonight Tuna Pasta thingy by Cow and Gate- her favourite) whilst I cooked dinner for everyone else. I managed to spoon in the gel and pasta whilst she played in the kitchen. Then we all sat down to eat a similar dinner. She had PKU "Lamb and Mint" Burger Mix in 3 mini burger shapes, broccoli, carrots and the remainder of the homemade vegetable curry from yesterday. She really, really enjoyed eating almost the same and particularly enjoyed swapping carrots (protein free) from Daddymin's plate.

p.s She is also a raver. The alarm on my phone (the anti-mummy brain that forgets EVERYTHING) went off during breakfast yesterday to remind me about Moomin's new swimming lesson time. For some unknown reason it is set to 'Insomnia' by Faithless. We had one of the happiest breakfasts we've had for ages whilst Gremlin boogied away to it!

Tuesday, 11 January 2011

Gremlin Estefan and the Hertfordshire Sound Machine

To watch this clip is somewhat misleading. It shows none of the horror that went before- the screaming, tantrums, cajoling, reweighing and re-calculating to ensure she eats what she's supposed to. It does, however, show the latest trick in our arsenal to get her to eat. It's a comedy sound machine thingy bought by Daddymin for one of his work colleagues that never made it to its intended destination. Note how she loves the burps- she is her father's daughter.

video

Friday, 7 January 2011

Not so happy new year!

Happy New Year!

I've been quiet for a couple of weeks, as we've been going through another tough phase and I didn't want to depress you all. Gremlin stubborn independence has now gone through the roof. She is not too bad at lunchtime but come dinnertime, with the amalgamation of tiredness, protein is currently only provided by the back up 'fromage frais' option. 44g Petit Filous is 3 exchanges, or Munch Bunch 45g is 2.5 exchanges. Then I have been trying to offer her self-feeding options. Tonight was PKU pasta with homemade tomato sauce (protein free) and yesterday was PKU Promin sausages, carrot sticks and brocolli. She still didn't eat terribly much, but at least she wasn't screaming the WHOLE way through. Ugh.

We are muddling through as best we can, but her levels are fluctuating wildly. 570, 293, 566 for the last 3 blood tests. There are many factors that may have contributed. Her sleep has gone to pot, she is teething canines, she's just started walking and she had a virus before Christmas which seems to have completely knocked her out of sync. She seems very cross a lot of the time. I spend evenings with her screaming and clawing at my leg while I try to cook dinner for her and her big sister. It's tough and quite exhausting at the moment, but we are ending the day at the correct protein exchanges much more often that we're not.

On a more positive note she gets funnier and funnier by the day. She is trying to do 'I'm a Little Teapot' actions when anyone sings the song and she runs up to Daddymin and roars at him to make him jump. It is heartmelting stuff from my cross little determined lady.

Tuesday, 21 December 2010

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.