Sunday my pain was up and I wasn't myself. Usually, if somebody brings my chair into my room I get excited because that means we're going out. I was crying and didn't want to do anything. I calmed down eventually but still wasn't happy, I got upset every time we stopped to look in a shop I just wanted to carry on. We didn't stay out long and when we got back I couldn't wait to get in my bed. Dee Dee, mummy and my sisters had a game of mouse trap, Taylor won. They had to leave after that because Ellie and Taylor needed to get sorted for school the next day and have an early night.
Yesterday after all doctors had seen me mummy took me out for the afternoon. We headed back towards home and saw Daddy which I enjoyed. We called in to see Gaz at work, told him its my birthday next week and that I wanted him to come out with us. We didn't do too much yesterday, mummy just had a few appointments to go to. I didn't settle for bed very well last night, was restless so it was quite late before I fell to sleep.
We've stayed in today. Had a lazy day really. Lizzy is taking me into the snoozalin soon. Mummy tried showing me the photos from holiday earlier but she had to stop because I saw a picture of daddy and I started crying then she turned the page and I saw another followed by one of Dee Dee and my sisters. Mummy decided to stop looking at them as I was getting too upset.
Saw the consultant today, she wants me to have my bloods repeated today because a few of my numbers are slipping. I've also put on quite a bit of weight the past 2 days which is fluid. She is going to chase up the date of the MRCP scan they want me to have and I've also been given the date of the 23rd may to go to theatre for scopes and biopsies. It was also mentioned a couple of weeks ago that my jejunostomy may need re-siting because my losses are really acid from there and they shouldn't be so she's also going to find out what's happening with regards to that too. My pain has been up today, I've had to have some extra pain relief. We've been waiting for the pain consultant to come and see us to make sure I'm on everything I should be and if there's anything else that could be done to help me with the pain. I'm just playing with my Lego and duplo now waiting for Lizzy to come get me to go in the snoozalin. Mummy's been Internet shopping for my birthday presents and told me I'm very difficult to buy for! She though she had 2 and a half weeks until my birthday then she realised it was next Thursday so she's trying to get organised now!!