How to get the best out of this blog...

All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x

Tuesday, 23 November 2010

Tuesday 23rd November

I freaked Daddy out this morning during breakfast at 6am by deciding to hold my breath, only for a few minutes, Daddy has caught me doing this twice now and he says its not funny and rubs my tummy up and down vigouously and blows in my face. I think its amusing to to see if I can make my lips turn blue, I'm not sure that Daddy agrees. I'm not sure why I do it?
I slept again til 9am and then I woke up before Mummy woke me, I had a lovely wash followed by a head massage, this is to help the scales on my head otherwise known as cradle cap.
I'm starting to have extra brain medication today after Dr Burns said, I quote, my "porky" weight gain (How rude!;-)) and more latchelose, which seems to be hitting the spot, he suggested I could have 5mls twice a day but as he wasn't willing to come change my nappies, Mummy said we'd keep it lower for now.

I had a early breakfast because Ann my physiohterapist was due, she also brought an Occupational Therapist called Alison today. She is looking at ideas for things which will help me like seating for me to keep my heavy head upright. She watched me do my exercises with Ann.
Mummy really wants me to go swimming, like any normal baby and asked about this today, because I am ill they will have to check with Dr Burns that I am 'clinically' well enough. If he says yes, once my immunisations are done Ann said she will arrange to go for posh swimming called Hydrotherapy, Its in a small pool where its quiet and the water is warm, Mummy says it sounds 'lush'! She has been busy looking for a swim hat to tuck my nasal gastric tube into. (NGT for future reference)
I am going to have a personal sensory room experience next week with Ann at Monks Lane Children's centre, their sensory room sounds really good, Daddy wants to get more ideas for my bedroom.
Mummy had planned to go for a walk with our friends from Aquanatal but we ran out of time this morning, she was disappointed because it was such a nice day, but I was very tired after my session and slept lots over lunch, Its better that I get my sleep, as I'm still having small fits. :-(
Daddy and Mummy went back to the Pharmacy to get my milk...even after sorting out a new prescription the company who supply them have messed up my milk order again, I wont have anything to drink at this rate - its a poor do. Mummy says she knows that she is rubbish at maths but even she knows that 12 bottles are not 84 bottles. So now we will have to go back again tomorrow.

We went to Dagfields Antique centre this afternoon as Mummy wanted to buy some nice jars for the kitchen, I wore a new hoodie that Great Aunt Sally and Great Uncle Roy had bought for me (Thank You - it looks good with my hat because without it Daddy said I looked like a boy) Just as Daddy was about to get me out of the car I decided to be naughty and hold my breath again, I realise that this is upsetting Mummy and Daddy but I'm going to do it anyway, I like the fuss - they were going to head back home but I was ok really because Daddy made me cough, so he decided to carry me round with him so he could keep a good eye on me. All those antiques were boring so I slept while they wandered around.

When I got home Mummy let me try on some other new clothes that Daddy's boss had brought for me that we too big previously, they are a bit pink but Mummy says the bunny on them is cute. 

Look at my full 'porky' tummy!!


  1. Morning Ellie, you are looking a little porky and cuter by the day! You need to stop frightening your Mummy by holding your breath, it must be very scary for her, my little boy Harvey used to do this when he was a baby (do the Drs have anything to say about this?). I hope you get to the hydro pool, being in the pool was Harveys favourite thing he loved the feeling of the water and as he got older and stronger he would kick his legs and thought it was funny to splash people. Claire house had a lovely pool, once we went swimming 3 times in one day! I also hope you get a special chair their are so many to choose from, although its a bit of a pain for your mummy the reps will come to your house and let you try the chairs on so you find the best one. Make sure you get a bath seat/support too this can take a while to find the right one but yout OT should help and provide this. We went to an exhibition last year called kids up north and they had thousands of fab things it was amazing the things they had! Be a good girl and have a nice day. Love Lyn xx

  2. you will love the sensory room at monks children centre i use to take abigail and leo in there alot and it is very relaxing lots of lovely lights and music it really good to see you gaining weight big hugs from us all to you and mummy and daddy

  3. Dear Ellie,

    You have not met us yet, but may be heard about us: the Went family from Holland. We can tell you stories about your mother when she was little: pinching raspberries and strawberries with Jaap. Swallowing liquid from the blow bubbles we bought her and started to bubble herself.
    We have been to Dagfields last July and it is one of my favourite centers. Unfortunately we can only buy small things, because we travel in a TR5. July 2011 (your grandfather does not know yet we are coming again) when we are over you can have a go with Jaap!!
    Give a hug to your mummy and daddy from us and promise us you will not hold your breath again, it is not funny.

    Love, Jaap & Marja