Saturday 22nd January - 20 weeks old

Saturday, really is it again? So that means it's my 20 week-a-virsary today. I have lived in hospital for 13 weeks out of those. Put like that its pretty rubbish.

To celebrate I had a lovely warm bath and then I decided to stop breathing. My heart rate plummeted and my Oxygen dropped, my face went grey. Daddy wasn’t quite prepared as he was still busy cleaning his teeth. It was three minutes this time, but it’s another one to add to my list. Every time is logged, symptoms, time, duration. This is getting to be pretty difficult stuff.
Daddy popped out to get some nappies; he can’t believe how exciting life has become. He also bought a magic internet box so that we would have a better connection here and save Mummy being up until all hours when it stops sending pictures. 

My fab sensory play things.

I got to play with some of my new sensory things that Jan made for me especially and gave to Mummy last night, but as I was tired I soon fell asleep. I did like my beautiful ring. It made Mummy think about all the things I will never get to do, have my first kiss, like fall in love and get married and have my own children. She wishes so much that I could have had all that and that she and Daddy could have shared it with me.

I'd have a diamond this big if i could!

My tummy continues to be the talk of the day, when Dr D called in he had a little feel all round my belly, Mummy asked what the hard bit was if it wasn’t stuck poo. He said that it was my liver, it was enlarged. This is the first time anyone mentioned this, as it has been functioning ok after my blood tests but Dr D said that it’s just another part of the Zellwegger condition as my body is not able to work properly and so far this is proving the case with my bowels too.

He sat on a chair to talk to Mummy as bad news is always safer when given to people sitting down, closely followed by warm cups of tea. It seems that the palliative care people will be coming to see me soon to discuss how to prepare for me to be comfortable as I get sicker. Mummy shut the door after he left, she put up the ‘Do not disturb’ sign and pulled down the blind. She was very sad and then it rained.

Daddy was gone long enough for Mummy’s tummy to rumble, but had butties on his return where he found Uncle Jonathan and Aunty Julia in my room cooing over me.

I got a long cuddle with Aunty Julia because I was behaving, I was showing her a new dress I was wearing and said how nice it was and she told me she agreed as she’d chosen it after I was born!

I was given some money from my cousin Beth whose birthday it was yesterday; she had asked her Daddy if she could donate some of her birthday money to my fundraising, she is only five years old that was very kind of her.  

Uncle Jonathan and Aunty Julia are planning a sponsored film-a-thon too, because they don’t like running but they are good at sitting. The idea of the film-a-thon is to watch back to back movies for a whole weekend and not go to sleep.  Uncle Jonathan has a big list of rules; he is just like Grandad Adrian, a stickler for the rules; Aunty Julia does not like the no caffeine rule at all.

I was awake for a long time looking round with my hearing aid on. I stayed awake long enough for tummy time and juice and then finally bedtime milk. Then I went back to sleeping again. I like sleep. Sleep means I’m restful. Sleep means I’m not in pain.