Sunday, 2 November 2014

Pictures. And words.

Special kids camp 2015. 
Catching up with friends 
Home in time for an assessment by Dogs for the Disabled. Verdict due three weeks later, it's now 2.5 months; I should probably chase that. 
Grannie's birthday. And a visit from the Yorkshire cousins. 
Superhero day at Godzone holiday club. 
Walks with the mad mud and chaos beasts. 
Catching up with friends again
Making the most of it!
Getting together for a very special Baptism. 
And spending time with the Baptismal girl. 
Hard at work polishing domestic skills (and burning a finger, causing me a phone call from school to explain the injury). 
Our own home based bake off. 
And a very poorly Imi, who had a really good summer, but hit the end of September with a very nasty chest infection and massively prolonged seizure, earning her an ambulance ride to Helen House, to check out the facilities. Eyes open here for the first time in 48 hours, sleeping off the heavy duty meds she needed. 
Harvest time - redcurrant jelly. 
And back to Helen House for a respite stay. 
Old treehouse and new computer room. 
More harvest, blackberries gathered on a walk we did without the mad mud beasts. 
Finally, after being urgently referred in April, and after being in pain for a very long time, Amana had surgery to replace the loose screw in the rod at the top of her spine. 
A small part of our apple harvest. 
And another of Amanas show-stoppers. We are working on presentation. 

And on not eating it all before it's finished. 
A busy but oddly photo free half term holiday, until yesterday, when Imi decided she needed to make chocolate brownies. Amana said she would help, I vacated the kitchen, and returned to this, and "I helped Imi lick the spatula, Mummy." 
She's been on CPAP ever since (with a short break for bread sauce, stuffing and gravy at lunch today), but she would definitely say it's worth it. 

And so that's us. Amana is starting to be in less pain now her spine is stable again. One month on, we are still dealing with the stitches and waiting for the steristrips to fall off. But she is mostly going through the night without needing extra pain relief. 

She has started year 5 at school, and is finding it hard and tiring work. Very happy at school, but very unhappy about the idea of getting there. Struggling with friendships, desperately wanting to be independent, helpful, and utterly dependent all at the same time. It's an interesting mix. 

Imi really did have a great summer. Two weeks camping, in one of the coldest Augusts on record - six degrees (Centigrade, for my US readers!) on one night. And no chest infections! Very very happy afternoons snuggled up with her best friend and visited by plenty of others. Good days, good nights, and a quietly peaceful balance with some difficult moments but mostly really lovely. 

And then September came, and a big chest infection came out of nowhere, and suddenly we were reminded just how brittle she is. She's getting over it now I think maybe, over a month later; we've just had three days in a row where she's been off CPAP all day. But then we've had three days where she's barely been off it at all, where her SATs have been rubbish, and increasing times when nothing but multiple doses of morphine and midazolam will help quiet her breathing. 

Our GP visits regularly, our respite nurses are a great team, we are surrounded by all the support we could wish for. And she is tired, and some days we can see that really very clearly. 

But, although I haven't heard her laugh for a few months now, she can still shout loudly enough to upset her sister and disrupt conversations. She doesn't kick a switch to communicate any more, but she can still knock syringes and iPads off her lap with a smile. And it might be for just a few moments at a time, but she's still got her non-verbal sarcasm down a treat, she's still singing away to her Mennonite hymns and to the Downing Family whenever she's got the breath for it, she's alternating David Suchet reading the bible with Anne of Green Ganles as a change from the chronicles of Narnia, and she's enjoying the bits of life she's awake and breathing well enough to notice. 

She finished a beautiful piece of glass in the summer, and has a papier mâché owl on the go just now. And then she wants to do something with an old clock. I'm not sure what. 

So that's us. In more depth. How are the rest of you? 


We are still here. Apologies for the long silence. A week becomes a month, a month becomes a season, and then posting anything at all feels like a really huge deal. 

I might go back and fill some gaps, I might just post from now, or maybe this will be it for another few months. Sorry for the lack of a plan. But I know people have worried, so I thought I'd just pop up and say hello, still here, still breathing, and life is precious and good. 

Thank you for your patience, if anyone is still reading. 


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