New Words

It's a very exciting time when children start saying their first proper words, it's like a switch that goes on in their head and they realise that the practice random sounds they had been making can be turned into something which makes sense and that everything has a name and they can say it, and be understood when they want juice or cuddles.

Reuben has been saying lots of new words recently, many of them linked to Thomas the Tank Engine which he is a big fan of, and quite funnily he says them in a french accent, especially the trains called Gordon and Percy :o) It's lovely to hear his voice saying recognisable things and learning to pronounce things in his quirky little way!

There was one word however that Reuben said this week that did actually take me aback, and I did feel a bit physically sick and guilty when he said it. That word was 'calpol'. It dawned on me in that split second that Reuben was starting to understand the pain that he has and how to make it better. Reuben lives with pain, discomfort and soreness every day, and now he is starting to realise it. This is one of the things I was dreading, how to explain what is going on and why it hurts so much. It hurts us too. It hurts because we can say no, it's our choice, it hurts because we signed our names on the paper that authorised his spinal treatment, we made that decision on his behalf and he has to live with the pain and discomfort of it. The hope is that when he is a teenager he won't need to have spinal surgery to correct deformations caused by the scoliosis or prevent further spinal problems and my personal hope is that he will never remember any of this when he is older and that this will all be worth it.

Last week was a particularly bad week, the heat was really affecting Reuben, especially at night and he would wake every 20 minutes or so throughout the night - we tried as best we could to spray the areas of his skin where we could with cooling spray and keep him cool and comfortable, and so now that the warm weather has been replaced with more traditional British weather we are enjoying the rest, back to the usual routine of the hourly wakeups for leg rubs and turning - much better!

Reuben saw lots of family today when we met for his Granema's (yes there's supposed to be an 'e' in there!) 60th birthday! He was a little confused due to the difference in the usual routine - Reuben likes everything to be the same, but he loves a roast dinner and tucked into his roast potatoes and veg, especially loving yorkshire pudding! We met at Brockholes nature reserve for lunch and he really loved eating the 'CAAAKE'! Another of Reuben's new favourite words!

Munching on some yummy cake - another masterpiece from Auntie Anya (Eats For Treats!)