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.