Friday 7th January - Busy Busy Busy

OOH, I meant to say, last night before I went to sleep, I had a cuddle with my Mummy. You might think, what’s so special about that but it’s the first proper one for about three days, she’s been really slacking, well, I’m not easy to handle and the box is a bit of a barrier…..anyhoo, It was the bestest cuddle while Suze held my Oxgyen mask. I fell asleep just like I used to at home, it was ‘lush’.

I made a bit of a mess in my box last night and was sick all over Flopsy Bunny, she is still not speaking to me, and I can see her giving me dirty looks on the radiator where all her fur looks funny where Mummy has run her under the tap this morning

Annie is now fast becoming a popular visitor to my room as she and Mummy and Daddy have been discussing other fundraising ideas to help reach my target. She brought a proof copy of the hospital magazine where I will be mentioned next issue! She is trying to find out if we can have some collection tins and some other ideas.

Mummy has also had an email from a Lady called Zilah, and her brave little boy called Khian who is 3. He also has the same disorder as me, he is a little less severe than me though as he can swim! He wants to do a sponsored swim for me – how cool is that??

Big Hugs to you Khian and thank you so much…let me know all about it and send some pictures!!!

I have been coughing a lot and when things move around they block my throat making the monitor go beep, beep, beep and Mummy’s heart go thud, thud, thud! Mummy and Daddy have now  been shown how to clear the bubbles from my mouth with a funny plastic sucky tube. It tickles my tongue.

I haven’t seen Maureen the ears lady, since she called with my advent calendar but she popped in today and Daddy mentioned that my hearing aid was singing a lot so she said it could be time for a new mould, so she gave Mummy a big smile for my blog and then arranged things.

Daddy saw the Doctor, while Mummy disappeared, they talked about my heart rate today, it might be slowing down due to the drugs I take or just because I’m getting tired, my monitor goes off more often when I’m sleeping but also sometimes when I’m awake. This made Daddy sad.

Mummy had gone for a hot chocolate at the tea bar because her amazing friend Bubble Lamp Jane brought some meals on wheels, Jane has also been very busy creating and said that every good cause deserves a banner – so now I have one and it’s the most beautiful banner I’ve ever seen. Mummy came back with it and thinks Jane is brilliant. She said that being here has reminded her how lucky to have the most amazingly talented, creative, thoughtful and generous friends in the whole wide world. (Editor: Especially the ones who take very late night phone calls xxx)

When she came back my bedroom was full, there was Carole, and Anne my Physiotherapist and one of my Pink Ladies, Rachel, (and you too Helen  x) is helping Mummy put a timetable together for my daily activities. Mummy is a ‘bit’ organised (Daddy says “More like a ‘bit’ Monica” so likes the idea of a plan, its pretty irrelevant to me as I don’t do plans, I’m a lot more like Daddy, some might say unpredictable, I like to think its free spirited.

Anne helped to show Daddy some good positioning techniques too hold me safely so I don’t set my alarms off, she also showed him how to do my stretches and I will start to have a regular visit to keep me flexible. Anne has the softest hands. I was so relaxed…someone said that I was snoring – I’m sure I WAS NOT!

Andrea Polka dots, who manages the ward came into see me today with Bev from Home Care, (I’m going to call her Bev Curly Bun now because of her pretty hair). But Mummy said she wasn’t quite ready to talk about the meeting yesterday because it had made her so sad, and she felt like there was so much going on today so they said they understood and Daddy has made a DO NOT DISTURB SIGN so he put it up in the window! Andrea polka dots is cheeky though as she rang Mummy on her phone instead! She made everyone laugh lots. We like laughter because it sadness is all around us all the time and it makes a nice change.

I finally met Mummy’s boss today, gosh he’s tall, and he has big hands that were full of chocolates. As Mummy says she is feels she is the size of a semi detached house she is going to add the nice basket to my raffle prizes rather than eat them. He stayed for ages and listened a lot and then when he talked he had a funny voice, Mummy says that’s because he is from Chocolate land, he is a Brummy. He looked a bit scared of me I think, but Mummy understood, I am quite scary and even Mummy gets scared of me but she suggested he touch my hands. See, I didn’t explode did I?

He said my hands were tiny.

Well they are, especially next to his!

Penny came to help with my bath because an extra pair of hands is always nice, she held the bath on wheels and made sure it didn’t rock and helped dry me off then dress me. She spotted all the choccies and got very excited, because she loves choccies, I’m starting to think that most girls love chocolate. Does that mean all boys like Pizza?

Is that the time!! I should be having my supper now, I have to go – Daddy! Where’s my milk?? Mummy……wake up Mummy stop dribbling on the computer.

(EC: Tired Much?)

Awwhhh, look at the cute animals on the bag. Awwwh...crikey