Elin's Diary #8

Last week was pretty uneventful really, as weeks go. But we like uneventful sometimes, especially after a busy half term! Elin had her usual appointments, but swapped Hippotherapy for Orthotics which was necessary but nowhere near as much fun. Boo! I went to London for weekend to visit family. Unfortunately, we think visits to family will have to be done this way (i.e in relay) for the foreseeable future. The journey down with Elin at Christmas was a bit of a nightmare. When Dystonia makes it impossible for her to sit, a five hour car stint becomes pretty impossible. What happens is that she ends up working herself into such a state that you just can't bare to put her through it. Red face, lathered in sweat, breathing even becomes compromised for her. It's awful (and scary) to watch so goodness knows what it's like for Elin. The last time we attempted the train down instead was a nightmare too so for now it feels like there isn't an easy solution. This is obviously really upsetting since a large chunk of our family live in London. We are still waiting for a referral to Dr Lin, Dystonia expert at The Evalina Children's Hospital and it can't come quick enough. Elin's seating issues have affected her life experiences for way too long (meaning forever!) and now she is getting big the issues are amplified tenfold. Simple things like going away for a couple of days as a family can be traumatic for Elin. It's a part of her condition I find hardest to accept. She so loves company and different voices and new experiences but it feels impossible to expose her to these things when she can't sit in a chair or be in a vehicle. We just have to live for the times when she can manage it, and there are times, I just wish it wasn't so inconsistent for her.
Anyway as I enjoyed a lovely night in London (it still blows my mind that I can be in London in a couple of hours from Chester- it literally feels like you've landed on another planet when you get to Euston), Elin played her Daddy up something rotten and kept him up pretty much all night. Oh dear! Paul always says he can never sleep when I'm not here anyway, I think he feels the weight of responsibility of keeping one ear out for Elin waking up (usually my job) but I think it does him good to know what it's like to be 'on call' all night! In fairness he is as wonderful early morning as he is hopeless in the middle of the night so this division of labour means I get a lie in on a Saturday and Sunday and in school holidays which I'm happy to trade for a full night's sleep the rest of the time. I really, really don't like early mornings!
So I got back from London on Sunday and Elin slept really well (ha!) then it was back into the school routine again except this time with the unwelcome guest, the 'Beast from the East' !! Yep, this week we've had snow falling snow on snow, snooooowwww on snoooowwwww and it really feels (as if it didn't before) like a truly bleak mid-winter.

A Dystonia free happy journey in the car to the Cranial Osteopath this week, complete with home made, hand knitted Giraffe hat!! Erm...not by me obviously. I can't even hem my own trousers let alone knit, despite being quite adept when I was around nine years old thanks to my Nan. I think I even made a blanket once. I guess the novelty wore off! Anyway the visit to the Osteopath was a big success, Elin loved it and slept ALL NIGHT afterwards. Worth every penny. We've also noticed she's been breathing better since her visits started in December too. I always err on the side of caution/scepticism when it comes to alternative therapies but I'm open to try anything because I just don't think it can possibly harm. Cranial Osteopathy worked for sure when Elin was a tiny baby and I think it's working for her again, in a gentle and subtle way. Anything that makes her feel relaxed is a bonus in my eyes. I think she deserves a bit of a pamper now and then!
Following this, the weather sort of went off-the-scale crazy. We started to feel like we were in "Dr Zhivago" each time we went out of the door (minus the cossacks). This led to Elin having a self prescribed snow day today and it's not looking good for tomorrow either...

Elin kept toasty warm inside the cottage!! I hate her missing school but in temperatures of minus five and roads to us covered in snow and ice it's sort of inevitable. Sometimes you just have to give in to the elements.
Being off school gave us time to try our "World Book Day" costume on. Elin's school isn't doing it until next week but I thought we might as well have a practise run. I'm glad we did! Her costume looked GORGEOUS ...but it was too small! Arghhhhh!! Also when you have a child that lies/sits pretty much all day a giant stuffed hood maybe isn't a good idea. Neither is a onesie (that's too tight) when you factor in nappy changes. So it's back to the drawing board for me (fear not I have an idea- Don't panic Captain Manering!!) but of course I have to share the photo with you because it's just too cute not to. I think someone special to us who might be reading this would love this costume in particular, such a shame it wasn't to be. You have to imagine it, of course, with a lovely vintage suitcase and a plate of marmalade sandwiches....

How sad that Paddington Drake wasn't meant to be! Tune in next week to find out what the more sensible alternative is (disclaimer: it's not as good). Damn you Cerebral Palsy and your costume restrictive issues! Still, we'll alway have this amazing photo and I got to spend the afternoon cuddling a real life bear so it's not all bad.
Hope you all have a great week, stay safe in the snow if you've got what we have!
Thanks for reading as ever,
Ruth x