24th to 30th June - DELAYED INTENSIFICATION - Week 23

24th to 30th June

My week started well. My little cousin came to play all day. We made lots of mess with feathers and glitter and glue. I made peg dolls

and we both made fridge magnets. We had tea together and I gave my cousin a onesie I'd grown out of to wear home after our bath! My cousin had made us all a little cake which I really enjoyed eating.

On Tuesday we went to the library which was really good. I borrowed a cookery book to see if making new food might help me to eat more and 3 story books. I walked a long way into town with my toy pushchair. It made me very tired and my legs hurt but I was very proud of myself. I wanted to stay in town for a drink but Mummy said no. That made me very grumpy and I shouted a lot. We still went home.

Wednesday was hospital day. I was supposed to be going in for a quick appointment, to have my wigglies in and an injection. My Auntie took me and Mummy. When I had my blood tested I was very anaemic and had to have a blood transfusion. As we were already there and it was early we decided to wait and have it on the same day. My key worker came and spoke to Mummy to see how we were and to find out if we'd heard from the hospital in Gibraltar at all, about us going home and about Maintenance! Mummy was very pleased to get a bit of paper from the Doctor explaining maintenance. The Dietitian also came to see us. She is very happy I've put weight on 400 grams in a week. I only have 3 more night feeds and I should be able to stop as long as I keep trying to eat! My Auntie stayed with Mummy and me at the hospital all day and we played games together whilst I had my blood. Mummy had to buy me chips because she hadn't bought any lunch for me. I didn't mind at all.

My big cousin passed her driving test on Wednesday so I made her a card. I was very pleased with it when it was finished 

Because I am very neutropenic again and the nurses are coming to our house everyday to give me an injection we haven't done very much. I have been more busy playing with my toys and making things. I am even able to sit on the floor to play and get myself up without (much) help.

The injections still make me tired and on Thursday I was very sick. In fact I was so sick my tube came out again. This time I promised Mummy I would take my medicine's very nicely (I don't have so many now) and that I would eat and drink very well. So she didn't ask the nurse to put the tube back in. Although I shouted so much about about Mummy getting the wrong top out on Friday Nana thought my tube was being put back in.

I find it hard to sleep some nights and am starting to really want to get home. I really don't like being sick anymore. 

Still on Sunday I went to my Aunties house and played in her garden, chased her cat, played Cooking Mamma on the WII and had my toenails painted blue! Very exciting.

Mum Says: We have started to see some improvements with Alice this week. It is always good when things improve like putting on weight. I am still continuously worried about her temperature, bruising, bleeding and weight, diet and mood swings. Alice is not quite herself and it is now that I begin to wonder if she will ever quite get back to how she was before. Alice has started to talk more about everything and it is amazing how much she knows and remembers about what is happening to her.  On a positive note we are now heading towards her maintenance and it feels like we are moving more rapidly towards the light at the end of the tunnel. Unfortunately it also means working out what needs to get back to Gibraltar and how it is going to get there. It is amazing how much stuff you can accumulate in 20 odd weeks!