Once upon a time, not so very long ago........

Little Leon was born with a poorly heart. This made his Mummy and Daddy sad and they decided to search for a special friend who would keep Little Leon company and look after him while he was in hospital.............

The Adventure begins..............

Tuesday 31 July 2012

Little Leon would like to declare Leons Heart Open!

Today Little Leons Mummy finally got around to opening an Etsy Shop! 

Leons Heart!

His Little trimmed heart bears are the first to go on sale, soon, (as soon as Mummy takes the pictures!)  The bracelets and key rings will appear. so please watch this space!



please have a look and tell us what you think, obviously there is a free hug from Leon with every bear!


Love Leon and Mummy xxx



Sunday 29 July 2012

Little Leon frightens Mummy and Daddy!....


Well, what a long week it has been for Little Leon and his Mummy and Daddy, after his marching to keep the unit open on Monday, Leon started to feel poorly....... 


On Tuesday his temperature went up, and up, and up and........ When he was at 40degrees he decided he might have to drop in and say hello to the nursey laydees at the Accident and Emergency department because the Calpol and Ibruprofen were not doing the trick!  Mummy had rung the doctor, but had got the receptionist who suggested, (obviously after years of medical training) that a book on the day appointment the day after was more appropriate!  Mummy likes to cook her eggs in a pan and not on Leons tummy...... too much mess!  So after one of those conversations that ends up with Mummy hanging up in frustration, bypassing the Walk in Centre and going straight to A&E!  Off they set.

So Mummy telephoned Daddy at work and he said he would meet Leon at the hospital, he wanted to see the nursey laydees as well....

So at 4:30pm Mummy tucked Leon into his car seat, off they went.  The receptionist booked Little Leon in and said he did look like a little warm boy and sent him to sit in the Childrens A&E, he was very quiet and didnt even manage a smile when the Nurse invited him into her office.
Little Leon needing Daddy hugs

She knew all about Little Leon and his poorly heart, so she found him a lovely bed to sit on and then went off to find the doctor, meanwhile another nursey laydee  wanted to check Leons wee..... Daddy said Mummy could do that because last time, Leon wet Daddy...........  Well, the little bag went on, Leon wanted a Daddy hug, and wooo!  or should we say Weee!  Little Leon leaked into Daddys shirt pocket and wet his parking ticket....... poor Daddy!

So then he got some more Calpol, yummy..... not, Little Leon doesnt really like the taste.  The lady doctor was very kind and let Little Leon play with her stethascope while she was listening to his heart, she said he has a virus and she would let him go home.

Leons personal nurse looks after her little kazoo

So Little Leon went home again and spent the night still being warm, but the Nurse knitting Nana had made for Mummy when she qualified as an OT looked after him, (she knitted a nurse because she didnt have a pattern for an OT...)   Gramma called in on Wednesday to look after him for the afternoon while Mummy took Grandad out on a Steam train to York, he was looking and feeling lots better and had eaten some lunch.........

Leon and Ollie watching ceebeebies!
But he had other ideas in the night, he woke up for his 2am milky and Mummy noticed he was hot hot hot again! 40+ degrees again.... then he was sick in his cot..... poor Leon, but good for the cot bed gang as they were all crowding in the bottom of the bed, so up Daddy got..... gave some more Ibruprofen...... and waited an hour....... and when Little Leons temperature was going up and up and up, Daddy packed him and Mummy into the car and went to see the Nursey Laydees again.........

This time they took him straight in, it was the nursey laydee he had seen on Tueday afternoon! She was very happy to see Leon but said he should be tucked up in bed not visiting her in the middle of the night!  The charming Dr Singh came and gave Leon a good look over, its a stubborn virus he said and if it had been his little kazoo he would have done the same and brought him straight back.  So after a couple of hours, off back home he went, to sleepy he went, and off to work Daddy went and into a worrying heap Mummy went.........

Mmmm yogurt!

After a good long sleep he woke up and ate a whole Yoghurt, the creamy kind with the fruit in the bottom!

He spent Friday playing with Mummy and his toys feeling much better!

Woo Mummy hugs!

Saturday he even braved a trip to Trinity Walk as he was running out of Milky and Nappies....... Thats so not cool for a Little Kazoo to do that!



Tatty Teddy meets Little Leons Daddy!



Guess who he met!  It was Tatty Teddy, you may recall that Leon met Tatty at the Baby show in Manchester last October when he was bursting pink balloons!  They were very pleased to meet each other again and Little Leon introduced Daddy.

They also took Mummy for coffee and cake......




However, Sunday morning Little Leon woke Mummy and Daddy nice and early and wooo!  Was covered in a red rash...... Oh my, what were they to do....... Well they took Dr Singh's advice and took him straight back.......  The equally charming Dr Goghu, said it was a post viral rash and nothing to worry about.

So after three visits to the laydees and gentlemen of the Accident and Emergency department in Pinderfields Hospital, Little Leon, Mummy and Daddy would like to say a beeeeg THANKYOU for looking after him and Leon says, wink wink, he will see you all soon..........


Little Leon says if you have a temperature get Mummy or Daddy to get you checked out, its probably going to be a virus like his, but its best to check it out, plus you get more hugs than usual if you are feeling poorly........  :D

So Life after TOF repair marches on, but it is still a worry when you have a week like this where you think your little guy is going to hang up his dancing shoes for good......  but not this week.... were stilll dancing.........



Thursday 26 July 2012

Little Leon goes a marching.....

WE SHALL NOT BE MOVED......

As most of you will probably have heard by now..... if you havent which moon were you visiting....... The Childrens Cardiac surgical unit in Leeds was recomended for closure and the loads and loads of people who use it 'managed' in the direction of Newcastle for treatment.....

Little Leon and his friends, their families and his nursey laydees are very understanably upset by the whole process.......


Heart families meeting to protest
 
So on Monday the 23rd July they all gathered together to protest in Millenium Square in Leeds. They sang as they walked, conducted by Lyalls Grandad.  Little Leon walked with some of his Laydees for a little while, he blew them a few kisses to keep them going.....


Woo! this marching business makes me thirsty

The impact on the area will be huge for the many children already using the service, not to mention the children not yet born or diagnosed. Not only will the other services in the areas not closing become over subscribed, the financial, family and transfer factor doesnt seem to have been considered at all.  And whilst no one will argue that centres of excellence for surgical procedures are a good idea and vital for the training, research and development of new surgeons and technologies.  It doesnt appear that many have looked into the impact on the families themselves.....


For Little Leon it would mean that he might not see Mummy or Daddy for days at a time, because Newcastle is far far away and try as they might, one of them will have to work to keep the house, pay the bills and pay for petrol to get to and from the hospital.  It will put pressure on Mummy and Daddy because they look after each other, Mummy does the medical, Daddy support and headless chicken running around and Daddy does the driving and supports mummy when shes worried.  Both of them look after Little Leon..........  He might not see his Grammas and Grandads either as they are quite old and dont like travelling too far.  

This is my TOF heart T shirt woo!

Little Leon worries that in an emergency how long will it take to transfer him to see his doctors?  if the weather is bad or the traffic is thick with all the luck in the world, the Embrace team cant fly... If the air ambulance can fly..... will it be available.......  Its such a worry for familes who already have too much to worry about......  



Leons says, go lady put that sun tan lotion on!

So really Little Leon and all his heart buddies and their families would love the unit in Leeds to stay open.  In fact on Tuesday the 24th the decision was referred to the Health Secretary for review into this floored process.

Leon and his buddies say..........   WE SHALL NOT BE MOVED!