Logan James Wilkieson
Today Mummy told me I have a Blog. Good! More toys to be washed! All my clothes and toys have to be washed before I can play with them. I push things out of my cot and then they come back clean.
Mummy said Uncle Phil had put my blog on a machine which people can read. Will it come back clean? Mummy told me Auntie Katie will put my words in to this machine, I hope they don't shrink!
Today I am in a big building with lots of nice people who keep talking and touching me. Mummy says these are nurses, I think I love my nurses. If I smile they come and talk to me, wait until mummy has shown me to blow kisses.
When I was born Mummy and Daddy forgot to give me a gene? This would have stopped me from getting a sore bum, mouth and eyes (Auntie Katie will tell you about this ( Auntie Katie - Logan has inherited a faulty gene, which prevents his own immmune system developing. Until now his body has been able to fight off diseases and germs as it had some of his mum's immune system in him from when he was born. Now this has gone and anything he get such as nappy rash, thrush in his mouth and conjunctivitus, which are all common in babies he cannot fight off) I don't want Gene in this cot with me, Mummy and Daddy look after me good. My Mouth and bum was sore, glad mummy remembered the right cream to put on
I did not like my milk and started to get hungry, Mummy and Daddy and me had to go and see a man who pushed a sharp bit in me and got some red stuff out. Mummy was told we had to go in a van with two men on a drive through the green fields to this building we are in with my lovely nurses.
Mummy and Daddy have told me I have to stay under my machine all the time (Auntie Katie will explain ( Auntie Katie - As Logan has no immune system, therefore no way of fighting off germs he is being kept in a sterile room. He has what looks like a big extractor fan over his area, this ensures the air he is in is sterile.))Mummy has said lots of people will visit me but they will have to stay behind the gate, its like being in a zoo (I don't know what a zoo is, but I have animals in my cot) Mummy said these people might have germs on them I hope these are toys.
Mummy, Daddy and Grandad are the only ones to come into my space, they MUST have clean clothes on and wash before touching me. They wear silly hats and aprons on which I try to get off.
I had to go in a van and go to sleep, when I woke up they had put some toys on my chest. These toys are for putting medicine in me and for taking red stuff out. My lovely nurses come and play with these, mummy and me counted three tubes.
Mummy and Daddy have told me I will lose my hair. This will stop Mummy using the machine that eats Daddys hair on me. Chemo will make me grumpy and poorly but mummy and daddy will be there, and my lovely nurses, after this I will get some more bone marrow (Auntie Katie will tell you, she is getting good at this( Auntie Katie - Logan is currently recieving steroids and antibiotics to get rid of any outstanding infections he has in his body. Once he is clear of infections he will begin a eight day course of Chemotheraphy this will destroy any existing bone marrow he has. He will then recieve a Bone Marrow transplant.))
I will be here for 4 to 5 months and miss my christmas but Mummy and Daddy have said that my birthday will be twice as good with two lots of toys and a party to see all my friends again. I will tell Auntie Katie what is happening to me so she can update my blog?
I hope you will all leave messages for my Mummy and Daddy to read to me.
Hugs and Kisses
Logan
Sunday 8th December
Grandad and Granny back again! Silly nurses put socks on my hands! I took them off because they are meant to go on feet! Grandad said they put then on my hands because I was a naughty boy and kept pulling the food tube out of my nose! Big splashing in bath, I can get water everywhere if I splash hard enough! Getting good at splashing!
Mummy back today, gave her extra blow kisses! Toni & George have sent a MAGIC KEY for Santa to get into places where there is no chimney. I leave it on my outside my door for him and rudolf. Do hope I see Rudolf, someone tried to put ears like his on me. Boys don't wear reindear ears.
Saturday 7th December
Grandad, Granny and Auntie Katie came today! Grandad looking after me so had to show him how to work my toys and things! Auntie Katie hasn't been for a while, Mummy says she had a snotty nose! Did lots of dancing for her and gave her some blow kisses!
Had to tell Grandad off he was not putting enough water in my bath! Lots and lots of laughing and kisses for my nurses!
Friday 6th December
Big day today, I'm moving!! All my toys had to be covered, I tired now with organizing my room. Mummy says we can bring Christmas to my new room now! Can't see a chimney for Father Christmas? Can blow kisses to everyone through my window!
Thursday 5th December
Granny and Grandad here, Granny came on a bus and go's home with Grandad! Good bath today lots of playing and splashing, Grandad all wet again! Mummy showed Grandad how to load my machine with milk. He is looking after me at weekend! The super star (me) is getting a new room! Hope all my lovely nurses remember and come to play with me!!
Lots of blow kisses
Wednesday 4th December
Bad day today! Lots of big sleeps. Ride in my white van!
Mummy says goodnight
Tuesday 3rd December
Painting today, made my Christmas decorations. Tummy toy fixed tomorrow. I can have a proper bath then!
Night Nite
Monday 2nd December
Good day today, I escaped again! Lots of playing on my mat!
Lots of love
2 comments:
Hi there, Jenny (Robert's Mum) here again.
I do hope that both you and Logan settles well into the new room. Sounds like you are having the same problems that my Robert had with pulling the ng tube out on a regular basis. It is so frustrating isn't it? But on a positive note - from what I can see/read, Logan is at least eating some solid food (...the chips on the photo). When Robert was in hospital he only ever managed milk, and he was well over a year old before he was on pureed, and about 3yrs old before he ate non-pureed food. So please do not despair if feeding is difficult / troublesome. At one point I never thought Robert would eat a proper diet - but his favoutite meal is steak and chips, closely followed by pizza and garlic bread!!! Thankfully though, he does now eat vegetables - even sprouts! He was underweight for years, and now we have to watch what he eats!
I am amazed by the photos that Logan is sitting up - Robert didn't have proper head support until over a year old, and didn't sit up on his own until he was about 18 months old. Obviously all children are different, but Logan's progress in these things will stand him in good stead as he gets older.
Apart from the odd smile, Robert never really showed signs of happiness until his T cells started to recover a while after his transplant - but now he is such a giggler and chatterbox! It is so nice to see pictures of Logan with a smile - it must help you to get by.
I am thinking about you a lot - it is 8 years since we were in Gt Ormond Street. Robert's BMT anniversary is the 23rd December - so this time of year in particular makes me think even more than normal about what he went through.
It is good to see that you have a lot of family support - people to help you care for him, as you need a bit of time to re-charge your batteries.
I will continue to read his blog and hope that you might contact me when you are able.
Take care, and Goodnight.
Jenny x
PS - Hope you don't mind me mentioning this, but I will, just incase no-one has told you. There is something called THE FAMILY FUND - an organisation that helps families in difficult situations. I read an article that said how you had to give up your flat - which is really dreadful for you. When we came out of hospital the Family Fund gave us the money to buy a new vaccumm cleeaner - we got a Dyson Antibacterial one.
If the organisation is still in existence, they might be worth contacting. Hope this helps you.
Hello Little Man. It was good yo see you on Saturday, you have definately grown and it is nice to see that you are still dancing, smiling and clapping hands. Your new bedroom is much better and at least you can play on your mat on the floor. Mummy gave me your hand print painting and I have put it up on the wall for everyone to see. Won't see you now till after christmas but will try to come up again between christmas and new year. It was nice to see your mum too because last time I came up she had gone home to sort things out. I can see you're still keeping them on their toes. Lots of Love from everyone here, see you soon darling xxxxxxx
Post a Comment