Living with Cerebral Palsy πŸ‹πŸ‹

Sunday, 26 November 2017

Elin’s Diary

Welcome to ‘Elin’s Diary’ which I’m hoping to update every Sunday reflecting on the past week of adventures! (Perhaps with the odd post in between, too). It’s been overall a good week for our little sunshine girl. She has been slightly off colour - something I’m putting down to the flu vaccine last weekend but is more likely just a little cold or virus with all the excessive secretions that have been plaguing her.  She even had a rather long nap at lunchtime in school more than once this week! Oh dear Elin how sad! She’s not done that since she was a tiddler.  Apparently she was snoring all over the classroom I’ve no idea where she gets those bad sinuses from! (Me) Although we don’t think she demonstrated appropriate remorse! I think detention is the only way forward.

On Friday I missed an apppintment in the athsma clinic for the THIRD time. I can only conclude that my sub conscious being really, really doesn’t want to go or that any *rare appointment that I have for myself with a healthcare professional just never quite arrives on my radar, even though it’s repeatedly written on my calendar! I’ve never once forgotten an appointment of Elin’s so why I can’t muster up the enthusiasm about my own health to remember a five minute check up is beyond me- maybe I’m scared somewhere in my psyche that I’ll be told red wine causes wheezing!! But I do think that the seemingly endless amount of appointments for Elin in the last six months or so has created a bit of a brain malfunction on my part. Perhaps you can carry around too much information in your head and you sort of short-circuit. I feel a bit like I’ve short-circuited! Yesterday for the first time ever we ran out of one of Elin’s medications. I had forgotten to pick up the new bottle from the Chemist. I rooted through the cupboards in disbelief of my own idiocy even though I knew they weren’t there. As I turned the bottle upside down and shook out every last drop, like in that Tomato Ketchup advert from the 80’s, I felt totally gutted. Elin is so vulnerable and reliant on us being on top of everything. Feeling that you let her down even in a tiny way is horrible. Yes we all make mistakes but being wrong is not one of my strongest points! Luckily for us we managed to elicit every last drop out of the bottom of this medicine bottle- taking us up to first thing on Monday morning where the new bottle will hopefully be waiting patiently for me in the Chemist. This barrage of appointments for Elin we seem to have been experiencing is not necessarily a bad thing though, I’m not complaining, she has an amazing team of professionals around her ensuring that she gets the very best care from all angles and for that we are forever grateful (I just wish my brain cells would stop feeling so frazzled and start working at full power again-if they ever have been)
For example, on Friday Elin got to start ‘Hippotherapy’ again. Sadly this is nothing to do with actual Hippo’s (shame!) and instead is a horse riding therapy for the disabled. Elin’s muscles, joints, spine, head control and pelvis are all given a good workout whilst on the back of a mechanical horse with a physiotherapist. One day she may migrate to real horses, but obviously there is a risk there now she is so big and a lot of responsibility for the back-riding physio to keep her safe. So a mechanical horse it is for now, which mimics the movements of a real horse. Elin loved it! It’s so wonderful just to get her doing something new that she enjoys and if there are physical benefits then all the better. 
The Clwyd Special Riding Centre is an amazing place which would never run without donations and volunteers. It blows my mind that this sort of opportunity is open to Elin because people are willing to give up their free time to make it happen. The generosity of the human spirit never cease to amaze me. We are very much hoping this is something Elin can continue to enjoy for some time to come.
Elin’s also had a really lovely weekend because it was her Great Aunty Brenda’s 90th Birthday Party! Wow! That’s quite an age and Elin was absolutely delighted to be out at night! In fact she was so good and so pleased we began to wonder if she thought the party was for her! It was a special treat that big sister and all round favourite person Caitlin travelled back from London for the weekend to sing at the party. She brought the house down as usual but what was lovely for me was to see how excited Elin got when Caitlin started singing. She just adored it. Usually I would shy away from taking Elin out at night because I don’t like to upset her routine (or things just aren’t suitable for her) but I’m so glad we did!!! I realised that I get used to going out in the evening without Elin and you always feel like you are missing a limb. It's a feeling you make yourself get used to for practical reasons but it never really goes away. So it was so good to see the extended family together and have Elin there alongside us. I’ll leave you with some pictures of Elin trying to steal Aunty Brenda’s thunder and wish you a really good week. Thanks for taking an interest in our miracle girl 😊
Ruth x


Friday, 10 November 2017

Mother of all Lists

Today a post I wrote for Clemmie Telford AKA 'Mother Of All Lists', went live on her blog. Clemmie's blog is, in case you haven't guessed by the title, a collection of lists covering pretty much any subject you can think of. Clemmie writes candidly about all aspects of parenthood and beyond and also accepts 'Guest Lists' from other people, covering subjects as wide ranging from dealing with a breast cancer diagnosis or the death of a loved one to tips of planning a great children's birthday party. I am delighted to say my list about living with Cerebral Palsy has now been added to this catalogue of posts. I actually found it quite challenging to write in a 'list' format and struggled with what to include. I think my original 'list' was about three times as long, so editing down to a size people might actually want to read was hard, too! If you'd like to take a read you can find it here:

Happy Friday, folks! x
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