Another quick update as things happen!

We have an appointment for the botox, it's this Thursday, wish us luck! We're trying not to pin too much on it but it would be such a relief if it made a difference.

Today I went on a wonderful Pediatric resusitation course run by the very lovely nurses at Cornwall Resus. It did knock me sideways emotionally in a way I really didn't expect but in retrospect, I probably should have. I think there's a lot of emotional stuff just under the surface and it doesn't take much to set the tears free! However, I do now, feel much more mentally and practically prepared to deal with what may come. I may need to do it again at a later date in a slightly less cry-ey way to try and take a bit more of it in!

Also I really wanted to share some good news! Something is going so right for Rosa at the moment and we are all basking in how different this makes life feel for all of us.

She has had such a wonderful run of happy days and it makes so so much difference to our ability to manage everything. We can only think it is the adjustments we have made to her meds that have helped her to feel more happy, relaxed and herself than she has for a long time. It simultaneously makes us feel totally blissful and also puts into focus that she must has been struggling lately. So hip hooray, today was day 5 with no vomiting, no pain face, no seizures! It could have something to do with all the fun we've been having lately or more likely we've been able to have more fun lately because Rosa is in a happy place. Long may it continue!