Elin's Diary #6

I have just realised in my last blog post that I forgot to mention something else that can help beat the January blues- making plans. I made a conscious effort last week to try and pull myself together a bit and this largely involved making plans (and drinking wine whilst making plans). I'm feeling extremely lucky to have so many lovely people in our lives that we can do fun stuff with. As we approach February I'm definitely feeling brighter and able to focus on the positive again. Perhaps if the sun would just come out and the snow would leave for good we could pretend January never actually happened at all!?
Elin's been doing really well. She's basically had no issues at all health wise. Even the dreaded dystonia issue backed into the shadows a bit last week and I actually got out to a couple of appointments with a lovely relaxed Elin in the back of the car . Here she is enjoying the thought of going to her Cranial Osteopathy

Of course being Elin this wasn't fool proof and we still had some pretty 'stiff' times this week too. But school report better sitting and standing so maybe things are on the turn. There was a strange episode on Friday night where Elin got really, really dystonic right before bed. Paul was in London for the weekend and for the first time since I remember I got a little bit anxious about what was happening with her and at what point I would have to call someone. She literally went like a plank and got pretty 'locked in', straining against herself, really awful to see but not entirely uncommon, except this time it lasted way longer than I've ever seen it happen. You can usually break this kind of stiffness with positioning. This time nothing was working so I reached for the final weapon in my armoury- Calpol. I wondered if something somewhere was giving her pain. Anyway the magic calpol kicked in and her body relaxed and I breathed a sigh of relief as she was finally able to sleep. I still slept on the futon on her bedroom floor though. It's strange the sense of overwhelming responsibility that comes when you're by yourself and Elin has a weird episode and you can't bounce thoughts of what to do off someone else. You start to doubt yourself and lack confidence. Once again I'm left in total awe of single parents, especially of children with any kind of medical condition, they are total heroes. I know I sometimes take the constant support I have from Paul for granted and perhaps vice versa. We are very lucky.

Apart from Cranial Osteopathy, Elin had Hippotherapy again this week and loved it just as much as last time! She even did a bit of tummy riding in a sort of Annie Oakley stunt position which was pretty funny to watch and even funnier for Elin. So glad she has the opportunity to experience this, I'm hoping one day she might progress to a real horse but I guess we'll have to see.

Aside from this it's been a fairly quiet week for Elin, other than the excitement last Monday of taking delivery of a brand new bed! Apparently Elin should have had a profiling bed some time ago so it was great that we were able to get one so quickly after raising our concerns about her lying on a flat mattress all the time (it's hard for her to manage her secretions and there's only so many pillows you can put under her head. Her bed was beginning to look like the one in the Princess and the Pea!) Anyway she loves it and so do we. It doesn't have the big built up sides that the last cot-bed had so she can see out of the window and the whole room looks lighter because the sides of the bed aren't blocking the light from the window. Result! Elin also loves going up and down on it of course! She's had lots of giggles making use of the mechanical back rest and foot rest in the last few days! I feel a lot better that her head and shoulders can now be properly raised whilst she sleeps and hangs out.

So actually some really nice things have happened this week. Although the snow was very unwelcome this weekend, as being home alone I felt a little trapped with Elin being unwilling to take her out either for a walk or in the car, especially given the dystonia on Friday night. But we did our best to amuse ourselves and had some lovely visitors. It all helps. I also managed to get out for an hour to help celebrate little Ellie Wheeler's birthday. As some of you know Ellie was Elin's friend and she passed away in September. I wrote a blog post about her at the time, she had such an impact on our lives along with her family, she was amazing. Well her incredible Mum, Annie, had a tea party in her honour this weekend. There was a beautiful lit-up tree with some photo's of Ellie dangling from the branches and guests were encouraged to write messages on labels and tied them to the tree for the family to keep. I thought it was a beautiful idea and I was stunned at the bravery and dignity of Annie in managing to organise such a touching, appropriate tribute to Ellie on her birthday weekend.

Of course it gave me a lot of perspective, too. How easy it is to forget sometimes what we have to be thankful for. This is what I thought as I played with my girl this weekend. It is easy to forget, but we really mustn't.