By @enablingevie, Mar 16 2013 10:55AM
NauGhtY AunTiE JoDiE!!
Sorry friends, I have had a word with my naughy Auntie Jodie as I'm counting on her to post up here what's been going on. I am getting stronger every day but typing is asking a lickle bit too much! She has been very busy but she has promised me that she will try harder to keep you guys up to date.
So what can I tell you. Well a lot has been going on since we last caught up. I had my Examination Under Anaesthetic (EUA) a few weeks ago and there was good news! My tumours had begun to respond to the the agressive treatment of the IAM Chemo. Soooo I was allowed to have my injections :) This was a big step to me being able to socialise in more open, public places with other children. They did hurt a weeny bit, but I am such a brave girl now- my mummy and daddy tell me this every day so it MUST be true!
I still had to be checked to make sure the naughty tumours are still making the right choices and listening to the medicine and getting smaller.
3 weeks later I was back at the Royal London 'opital and back under EUA. NAughty TUmours! A little bit of bad news- the tumours weren't doing good listening and I needed to have both my eyes zapped with laser to make the tumours listen better.
Lots of naughtiness the last few weeks! Even I have been a lickle bit naughty but I am trying to feel safer lying on my own and being brave. My mummy and I work SOOOOOO hard with our physio every day. My mum keeps saying she is getting arms like Madonna!? Who is Madonna- is she a lady called Donna who is mad??!
I had my next set of injections and Mummy got busy with organising some special swimming sessions for me. There is a Specialist Hydrotherapy pool very close to my place and mum found a clinic who can send a lovely physiotherapist who comes in the warm water with me and helps me to do my special exercises.. I had my first session this week. Check out my photies. I think it'll take some getting used to. It's not as hot as my luffly bath and it doesn't smell the same. But my mummy and daddy were there and it helped me to feel safe knowing they were in the water too.
So my tummy has ALSO been very NaugHTy! My milk has been changed and the tummy doctors are working hard to find out why I keep being sick. I am trying hard not to be sick but I can't stop. Mummy, Daddy and Grandma Laura took me on a really looooooong road trip to somewhere called Oxford- I wonder if Grandma Laura is from there as her name is Ford. We went to see a very clever man who has written lots of books about babies with poorly brains like me who have naughty tummies that don't listen! So he didn't have any miracle cures but my mummy and daddy felt that they understand my tummies and its working day more now and have some ideas on how to help my windy pops and to try help to stop me being so sick. We have to wait til I grow a bit bigger for any more answers though.
We had mummy's day last week. I know my mummy finds it a really hard day but I did tell my Auntie Jodie to tell you all that my Mum is the BESTEST mum in the whole wide world. I am the luckiest girl on the planet to have her.
Please take a look at all the special days that are happening over the next few weeks from all my friends who are trying to help me.
Without you all, I couldn't see my friends at Kiki's clinic who are helping me to learn to feel safe and teach my body to listen to what my brain is telling it to do. I couldn't have my special sessions in the hydrotherapy pools.
It's nearly the end of lent- well done to all of you who have given things up. Just 2 more weeks to go. I decided to give up, "giving up". I think I'll keep going past Easter Sunday. Some people tell me that I'm just like my mum- strong, determined, stubborn and tenacious. I wouldn't want to be like anyone else :) She's my hero- I love my mum