Week 4

Wednesday 12th November

Today Tina the physio lady taught Mum and Dad how to do my stretches and suctioning. I was a bit dubious as they attempted to tap my chest and back to keep the secretions from settling and stretch my legs and arms to keep me supple. Dad was way too gentle to have any effect and Mum was way too hard and nearly pulled my leg off. I cried all the way through hoping they would give up and let Tina have a go as its really nice when she does it, but they persisted. The worst bit was when they tried the suctioning themselves. All Mum managed to do was suck my cheek out (and not get any secretions) and Dad made me gag as he pushed the tube down my throat. Am hoping with a bit more practice I can learn to sleep through the whole experience in future.

Went on another walk with Dad today but Mum was cross because Dad forgot my hat and Mum is worried I may get a cold, which would be very bad news as I can’t cough or deal with anything myself. Dad says Mum is daft as you can’t get colds from bad weather only from other people - am a bit worried Mum will suggest I stay in a germ free isolation tank for the whole of winter to keep me safe.

Mum and Dad spoke with the nurses today about the possibility of taking me home sometime. Apparently it would be OK so long as I get my suctioning and they are arranging the local community nurses to meet me tomorrow as they will provide Mum and Dad with support at home. Another thing is they will try to get my feeds up to three hourly instead of two hourly, which will be easier for them once I am home. I am already on my Diamorphine every six hours now instead of four which is much better for me.

Thursday 13th November

Had a good night last night and only needed suctioning once. Mum and Dad did my physio again today and this time they were much better at it. Infact I managed to sleep through once session this time until they stuck the tubes in my mouth to suction me out -yuck. Dad and I went on another walk to the shops as Mum is feeling poorly and needed some chocolate - apparently this helps.

The Community nurses turned up today and they seemed really nice and wanted lots of cuddles with me. They explained to Mum and Dad about the support they would get since and I am under the ‘terminally ill’ category they would get full 24 hour support which means if I need help in the night they would come out and make me better.

I am starting to get excited about going home as Mum has told me all about my bedroom, the cats and even the cows that go past the house twice a day - I really hope I stay well enough to make it home at last, keep your fingers crossed for me.

I had a quick go in the bouncy chair today and quite enjoyed it-  although the experience was made all the better for finding my finger again.

Mum says when she was little she sucked the exact same finger - hope that doesn’t make me a bit of a girl?

more finger sucking action

Friday 14th November

Mum, Dad and I went out for our first trip in the car today. I was very calm and casual about it and found the motion of the car very relaxing. We went to Dad’s friend Simon’s house where he and Mum checked my email for me (messages from this site) and posted my diary updates on the internet while I had a nap, then we went home again and Mum and Dad read out my lovely messages - thank you loads for these.

I had more visitors today, which meant more presents. Auntie Kath and Auntie Kirsty came to see me and bought me wonderful Pooh and Tigger toys. I’m not sure they are real Aunties because they don’t look much like Mum or Dad, but they were very nice. Mum put Pooh and Tigger into my Moses basket, which means even less space for me!

Mum and Dad are still playing with how much food I get, today they started to give me more food but a lot less often, as they are trying to get me to 3 hours feeds. I’m not to bothered, as long as I get enough milk I’m happy.

I’m starting to wonder if Mum and Dad are staying here at ACORNS for my benefit or theirs. This afternoon Dad had some reflexology to help him relax, as far as I can tell Steph the nurse just played with his feet for a while, but he did seem very sleepy afterwards. Mum was very jealous as she loves reflexology.

nice of cousin Colin to coordinate outfits with me

Saturday 15th November

Today I had lots of visitors. My Great Aunty Pam and Uncle Geoff came to visit with my second cousin Colin.

I suspect I have a rather large family as they keep arriving and I don’t think I’ve met the same person twice. Then Grandma and Grandpa R arrived and I got to show Grandpa around as he hasn’t seen my home before -can’t believe I’ve been here over a week already.

Later on Uncle Tony and Aunty Katie came to have dinner with Mum and Dad. I sat around and joined in then pretended to be asleep as I hid my head with embarrassment as they managed to set the fire alarm off again. Once again the firemen turned up and Mum and Dad had to explain they were only cooking...again. Dad thinks mum is doing it deliberately - not sure why, maybe she wants to be a fireman?

Sunday 16th November

Dad and I got a lie-in this morning then both he and Mum left me for a few hours with Uncle Tony and Auntie Katie so they could go home and collect some things. I wasn’t too worried as I feel happy with them but as they waved off Mum and Dad I think I noticed a worried look on their faces as if to say ‘you are coming back aren’t you’. Not sure why, maybe they get scared on their own?

Mum and Dad came back with lots of nice stuff for me, not least my ‘Zeddy and Rhubarb’ Moses basket from my bedroom at home.

father and son bonding....

In the Afternoon I got a visit from my second cousin Diane. I noticed she likes to talk a lot and I didn’t get much of a chance to say anything so I decided to fall asleep. She did however bring me a ‘Fimbles’ teddy which is lovely but it really does mean there is no space left for me in my cot anymore - so Mum and Dad moved us (me and my teddys) into the new Moses basket which is a bit larger and all was well again.

Later on I didn’t feel too well partly because my feed tube came out and the nurses had to put a new one down. This hurt a lot, so I cried loads and loads. When I was crying I got a bit short of breath which scared Mum and Dad and had to have a lot of suctioning and a little bit of oxygen but I felt much better after that.

Monday 17th November

The doctor came with the scales to weigh me today and it looks like I’m putting on some weight. I now weigh 3.36 Kg (7lb 6 1/2oz), which is 0.27 Kg more than last week.

Mum and Dad say it’s very good for me to put on weight, Mum even says I can have some of her weight too if I like - she must really love me.

I’ve been a little unsettled today and Mum and Dad can’t really work out why. They had fed me, changed me, cuddled me and given me all my medicine, but I’m still not quite my normal self so the doctor came in to see me. The doctor (who Dad says looks like a farmer) decided I needed to have less food and keep them to two hourly while increasing my diamorphine to help my breathing. I am hoping this makes me feel a bit more settled as I still want to make it home for a visit but Mum and Dad wont take me until they feel happy I wont need the nurses help like today.

By the way I would just like to say a big thank you to Lorraine (Cornflower from Baby-Greenhouse Mum said) for my cuddly doggy - here I am asleep having a cuddle with him, I think he’s really cute and soft. I had to keep mum from stealing him so I kept my arm over him.

Tuesday 18th November

Has anyone ever noticed how a good burp can really make you feel 100 times better. Well, after a good winding during the night I started to get much better and as a result have felt loads better all day today. Some of the nurses think I may have a bit of colic - not sure what this means but mum says it sounds a bit like alcoholic and as such doesn’t sound like a good thing.

Mum and Dad are really pleased as they said they were starting to get really worried about me again ...parents eh, always stressing over something - they should have more naps during the day and more cuddles with soft toys, I find it really helps.

Anyway today I took all my feeds and was very awake and so got lots of people chatting to me - if only I could talk then I could ask them to at least talk about something interesting or at least stop making those gurgly sounds at me.

Mum wanted to try out my sling today and so popped me in when I moaned for a cuddle in the evening and I found it fantastic! Not only do I get held and walked about but Mum had her hands free to get my feeds ready and tidy up my stuff. Dad got a bit jealous of Mum having all the fun so he decided to have a go with me too but he was a bit more boring as he only sat on the computer checking his email and not paying enough attention to me so I feel asleep.
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