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.