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By @enablingevie, May 28 2013 02:17PM

Hi there friends

Another busy few weeks for the Shears clan. Who knew that my diary would be so busy!

So since we last had an update I have been back to hospital more times than I care to remember. So my tumours were tricking us and I needed to have another dose of IAM treatment for my naughty eyes! And some more laser treatment on both eyes. This cancer is just as strong as me but it only makes me fight it harder! Still on regular 3 weekly EUA to check on it- maybe it’s a bit like the tumours are on parole and they need to check in every 3 weeks to check they are on the right track and not being naughty!

Easter came and went- no chocolate for me but I did get some lovely Easter pressies- Thanks everyone for always thinking of me. Mummy and Daddy got to go to see a couple of friends ‘tie the knot’. I thought that meant they were sailors learning to tie knots but Mummy told me they did get married. Congratulations to Fiona and Matthew and Bec and Joe.

Some really big events have happened over the past couple of months that have been amazingly successful. So my friend Joe Frost ran the London Marathon and did it in the super fast time of 3hours 56 mins. He is amazing and I got to have cuddles with him before he ran – his tickly stubble was a bit itchy on my face though!

The day after the Marathon, was my very own Butterfly Ball. Everyone got to wear their special dresses and make themselves look super glamorous for the big event in Mum’s native land- Essex !There were SO many people there and they all had a fabulous night with performances from The Rock choir and acrobatics from Spellbound. There was a professional photographer who took lots of snaps- take a look at my LINKS & VIDEOS page for the link to see them all- you might have made a starring role. Thank you to Auntie Kerry and Auntie Francis for arranging such a fabulous night. Mummy and Daddy were very overwhelmed with the amount of support and just how successful the night was. Ohh and congratulations to Auntie Francis to having another baby- welcome to the world baby Beatrice. I can’t wait to meet you and show you what I have been busy doing over here. Maybe you can teach me some French?

Some more of my friends did the Tough Mudda challenge- Jade and Cassandra put themselves through a gruelling day of electrocution and wall climbing, bog water diving and ramp running all whilst running a half marathon! CRAZY people. Thank you again for being so crazy. Photos are on the FUNDRAISING GALLERY page. Thanks to East Sheen Primary School for making me a lovely sensory copy of my favourite book- Barry, The Fish with Fingers and for those who made scrummy cakes to sell to help Miss Fuller with her challenge.

Think that brings us up to date a little more. Last few weeks there has been more drama in my life- well what do I expect when I’m the daughter of the head of drama! After a bit of a nightime feeding accident and milk going into my tummy instead of my intestine, I have been very sick for the past few weeks. I think the stomach must remember things like an elephant and it was VERY unhappy about milk going in. The result of that has meant I have been very sicky and it makes me very sad. To add to that, the naughty feeding tube did come out of place and although mummy acted very quickly- it didn’t manage to get back in the right place. Had a few dramas with getting a new tube quickly and after 2 general anaesthetics, a week of poor feeding and 2 procedures later, and not to mention a very tired, stressed, emotional mummy, a new tube is in place.

What else can I tell you? I have a brand new suit as I have outgrown the last one. I couldn’t have got it without everyone’s help. I am trying to learn new things each day and I can now hold a little ball in my hand, turn some pages in a book and be quite a good shot at hitting the star on top of my ball. I EVEN managed to sit in the car seat for a couple of minutes without being too scared- check out my video on my LINKS & VIDEOS page. But my new most FaVOuRiTIsT thing in the world is fun-times with the fridge! I can’t explain but it makes me smile the most- photos are on my GALLERY pages. I hope they make you smile too.

Back to the Royal London hospital tomorrow for check on my eyes. I’m sick of the hospital now so I am hoping for good news.

Until next time.... Keep smiling- if you’re finding it hard- take a look in the fridge- it makes me smile 

Lots of love

(Not so much of a Baby anymore), Evie xx


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