Sweet Potatooooo Baaaaaaakkkkee

This Saturday we took Zack to the over-priced garden centre known as Bents. It isn't just a garden centre, this is a luxurious fascinating place full of home furnishings, gifts, food, clothes, books,  oh yes and plants. 

It also has a very, very nice cafe that charges you £18.00 for a sandwich (okay I exaggerate but they are expensive) however the cakes, oh the cakes, cakes gooooood. Bents is well known for it's Christmas decorations and displays so we thought it would be a great place to take Zack to look at pretty fairy lights, baubles and tinsel. All was going swimmingly until we over-egged it by showing him a row of fibre optic trees, this sent him into one of his little seizures. The examination of the miniature displays of Christmas scenes in a glass cabinet caused one of the seizures that makes him cry. Up until this points he was very interested in all the Christmas paraphernalia and I think he enjoyed his visit to Bents. On a good point at least we know that he's seeing something because of the over-stimulation which caused him to have some dippety doos. Dan suggested next time we take him to Bents he goes in blindfolded and we just show him one tree with lights then whizz him back out, hmmm, I think we might look a bit odd. 

After our over-stimulation we decided to relax with a nice cuppa in the Victorian Tea Room and Sweetshop. It is a sweet little cafe decked out as an old fashioned little tea room, you can have cream teas, high teas as well as cake and light bites . Zack loved sitting in there whilst I had a sandwhich and Dan complained that he was disappointed about the fact that his Bakewell Tart was shop bought and not home-made. I have to agree with him there, I would have expected home-made too, still the tea and coffee were served in fancy china cups which always makes it taste nicer.

Zack was visited by his two nurse friends the other week. His gastrostomy site has become a little sore and oozy. So his mates came round to take a look at it and prescribed him some cream. They told me not to worry it happens from time to time, it just gets infected due to little bugs that he can pick up here and there. They made a big fuss of him and commented on how big he had gotten and how well he looked. He tried to focus on them a few times but then got fed up and just wanted his pants putting back on. The site has now developed some over-granulation, this is where new cells try and grow on top of the hole to mend it, it can be stopped with some different cream. It all happened before in the early days so I know we can fix it and not too worried.

On a good note Zack has done well at his eating this weekend. He has been having a go at his pureed food and eating more than he has before. The Sweet Potato Bake went down quite well and he finished off two big blob fulls. I think this was helped with me whizzing the spoon towards his mouth saying Sweet Potatooooo Baaaaaaakkkkee. I am so proud of him, I hope it continues and he can manage half a jar. I just try a bit more each week, so our goal by the end of next week is to do three big spoonfuls.

We have our appointment on Thursday with the neurologist. As well as discussing Zack's MRI results, which I am not looking forward to we also want to discuss his seizures. We no longer think that the sodium valproate is working. His seizures are not reducing any more so we want to know what the next option is, I know there are different medications to go through but I just pray that we find something to stop them. 




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