Daddy's Birthday

Mummy and me waited for ages for Daddy to get up, not that he was lazy but I was awake at 5.30am so it seemed a big while. I had to wake Mummy up with a scream as I had a horrible tummy ache. She asked the nurses for strawberry juice and bottom pills which really helped but my tummy muscles just don’t work very well.

When Daddy came he opened his pressies and cards, Mummy gave him her card and mine they made him leak a bit because she’d written special messages in them.

I was weighed and lengthened today, I am 13lb 4oz/6.02kg and 62cms. I am doing so well with my milk that I am putting on loads! My graphs are going up, up and up. (Like my fundraising that’s doing brilliantly, thank you for your recent donations!!)

 After talking to my dietician, (I sound very posh don’t I) she doesn’t want me to get too fat so I am trying normal formula milk for a change. Hopefully it’s not as rich and will also helps my digestion. I had a bath and put my special dress on today. I think its beautiful – thank you Aunty Julia and Uncle Jonathan. xx

In case you wondered what its like to be 4 month old baby with a yucky illness like this, it’s pretty boring. I get cuddles but Daddy says I’m like a loose cannon and we never know when I’m going to go off.  I can hear with my hearing aid but when I’m in my box all I hear is windy noises. I can’t move very well, I get turned from side to side and then onto my back and tummy where I can only lift my head a little. (A bit like being cooked n a spit like a piggy) I can’t really swallow much anymore I think I’ve forgotten so I just get little tastes of milk, but most of the time my mouth is dry.

My milk and medicines whizz down my tube and my tummy just gets filled up six times a day. The stickers on my face get itchy and make my skin red and eyes go puffy. As for the seizures, like everyone else I think, I don’t know what to think, I don’t feel them when they come on anymore they just happen, I just feel a bit hot and my face feels sore after I come round.

 

The upsides are that I have a very fresh botty and regular baths, I have lots of visitors that come and hold my hand and give me kisses. The nurses think I’m cute and all the doctors like to pop in just to say Hi!

I get called Sausage, Tink, Pooch, Poppet, Pudding, Spud, Fish cake, Pickle. I don’t think it’s a coincidence that a lot of those things are food based, but I am assured that these things are a term of ‘endearment’ (was it Mummy?)

For lunch Sue the House keeper treated Daddy to a spare meal leftover from the children’s lunches, so I guess you could say he ate MY pie, chips and peas.

Grandma came to visit and brought Daddy a fruity Birthday cake with candles, Mummy said it looked suspiciously like a Christmas cake but as Grandma had made it all herself she didn’t say anything, plus it was very yummy I think because they soon tucked into it. Diets tomorrow hey? Actually Daddy did sort out his registration for the Triathlon today I think.

Karin called briefly unannounced but we like good briefly unannounced hugs she brought with her so we never say no to hugs here.

Dr Burns came back after his small Christmas break and Mummy talked his ear off trying to make sure everything is being done to keep me comfy. Unfortunately this means I will start having tests again where they take my blood as I am due to get my liver function tests done again. There is a big meeting this week to discuss my future…its called a Multi-Disciplinary Meeting, Mummy and Daddy say they don’t like the word Disciplinary as it usually means something horrid.

Helena rang to say she’d heard Daddy get a birthday mention on Signal Radio where they had said that he was here with Mummy and Me at the hospital, they said a big thank you for the fundraising we are doing! Helena was laughing a lot she was really excited as she normally listens to a Nottingham station so it was just by chance she’d changed channels! Becky has since confessed to requesting our ‘shout out’.

Daddy is ordering pizza tonight for his birthday because it makes him Happy. This might be the last one for ages as he’s off to buy trainers tomorrow. Go Daddy, GO!