ps.....

Daddy has just had a call to say that Little Leon has been taken off the ventilator tonight!  Woo What  a brave big boy!  Leon not Daddy, although Daddy is brave as well!

Little Leon opens his eyes!

Woo! Today Little Leon has been very busy making steady progress.  Overnight he was weaned off a couple more drugs and his ventilator was turned down and a couple of drains were taken out. Leaving just one left.

During the day, his morphine was turned down and then stopped. Little Leon started to wake up! But no wiggling and giggling as yet, he still has the nasty tubey thing up his nose and down into his lungs!  He is letting Mummy and Daddy know hes not happy with it by trying to pull it out!  So they have had to put little mittens on his hands!

Little Leon opens his eyes, but isnt happy about the tube up his nose!

After lunch Mummy and Daddy came back in to find Little Leon missing!!  he had sneaked off into a room of his own, pushed by his nursey laydee!  He is getting nearer the door, which he thinks means they will let him out soon!  The laydees upstairs are waiting impatiently for his arrival.

Little Leon catching up on some healing sleepi

So as Mummy and Daddy left for the evening, Little Leon snuggled with his little bear and hid his caterpillar under his blanket just in case his night nurse wants to snuggle with it as well!  Hopefully he will stay on the ventilator over night and when they have the big important ward round in the morning, they might take it off so he can breathe more easily as they say on the advert.....

Hopefully he will be a good boy and make some more progress overnight and surprise the important people in the meeting in the morning!

More updates soon!

Little Leon is making progress!

Little Leon has had a reasonable day.  The big Cheese and the assistant cheese has visited him a couple of times today and are happy with his progress.  They have started to wean him off  a few of the drugs and turned down the ventilator so that Little Leon can learn to breathe on his own again.

Mummy is relieved that Little Leon is back from surgery

The muscle relaxant was turned off last night and Little Leons Mummy and Daddy went in to see him wiggling and pulling 'dont like it' faces, which made them very pleased.  They were a bit worried he would knock out the breathing tube and as they were putting on his little mits, he grabbed their fingers and held on tightly!  That told Mummy and Daddy that he knew they were there and he didnt want them to leave!

Little Leon is still asleep to help him heal

Because Little Leons core temperature was a bit high, the lovely nursey laydees put him under a blanket blowing cold air, it cooled him well, a bit too well because his hands and feet were freezing cold, so they turned off the blanket and put some cooling packs under his arms, laying in his sleepy state, Little Leon was thinking he had seen something similar in Mummys fridge and she uses them to keep the pic nics cool!!!

Little Leon has a honeycomb dressing over his new zipper and will do a 'reveal' when its healed properly!

Auntie Sarah, visited and has bought Little Leon some tools to be able to dig and plant flowers in the little patch in the allotment that she has set aside especially for him.  Little Leon thinks Sunflowers would be a good start, or maybe some sweet peas!

Dr Noel is getting his own fan club in the Intensive Care Unit with everyone wondering where he came from and if he has any brothers or sisters!

Mummy will update with more news later, in the meantime they all say a HUGE thanks for the love and support from all the friends family and Team Leon!

Little Leon has his operation

Well, what a long day Little Leon and Mummy and Daddy had yesterday (27th June).  First of all Mummy spent the night with Little Leon, He slept all night, but Mummy didnt she was up every hour to check he was snoozing in preparation for his big day!

Early in the morning Daddy arrived for fun splish splash bathtime, Little Leon wanted to be a clean boy and spruced up for the Big Cheese and the  Assistant cheeses, he met the lovely laydee Elenor who was going to give him a long sleepy and look after him while the Big Cheese was operating.

Little Leon in his 'Heff' jacket catching up on cuteness sleep

Well at 8:45 Daddy wrapped Little Leon in his favourite snuggle blanket and carried him down to the operating theatre, the laydee Elenor was waiting and gave him some cherry smelling gas to make him drowsy, it was at this point that Mummy and Daddy left Little Leon in the safe hands of the Big cheese and the assistant cheeses to work their magic.

Dr Noel Bear Surgeon and Cake eater makes final preparations.

It was a very very very long day. Mummy and Daddy had breakfast with coffee, wondered around leeds, had lunch, wandered a bit more, went to the pictures to see X Men, wondered a bit more, by that time it was nearly 7pm!  no phone call, what were they doing with Little Leon?  Mummy was thinking they had decided to keep him all to themselves, and both her and Daddy were thinking things were not going well!  But at 8:45 Mummys phone rang and it was the Intensive Care Unit to say that Little Leon had enjoyed the theatre so much, he had wanted to stay for a little bit longer! 14 Hours that Mummy and Daddy hated every minute of!

Dr Noel with a map of the heart!

Mummy and Daddy spoke to the surgeon who said in a nutshell he had managed to do the full repair, but it had been complicated due to the complex anatomy Leon has.  He was cooled down a lot and was still needing to be cooled on the ward, this was to help his heart stabilise and get a good rythum.  His blood pressure was a little low and he had lost a lot of blood so the lovely charlotte, (who is getting married this weekend!) has sorted his lines out, given him some whole blood and given him a snuggle and looked after him all night.  She has gone home for a big sleepy.  Leon has had a comfortable night and is as well as can be expected considering the extent of the work the Big cheese did.

Mummy and Daddy are waiting in Costa to see Leon this morning, and will up date as soon as possible.

Thank you all for your kind thoughts and good wishes over the past couple of days.  Little Leon will be having more adventures with Noel as soon as he wakes up!

Little Leon and Noel go to the Hospital

Little Leon woke up early this morning and shouted to Daddy to give him his medication, then he napped for a while in Daddys bed, and had his morning milky.   As he was getting ready for his big day, Little Leon had to brief Noel what the order was going to be. Noel has to pack his own bag, then pack Leons bag and guard it so that no one can slip anything into it.  They always ask at the airport if you have packed your own bag!

Little Leon briefing Noel

Before Leon, Noel Mummy and Daddy set of to the hospital, they went via the Grammas houses, its going to be a little while before he can give hugs and cuddles, so he wanted to give them extra, so that they didnt feel like they would miss out.

Noel guarding the case, its posh, it has Mikey and Mini Mouse on it!

So, Daddy drove Little Leons Volvo chariot to the hospital and managed to find a parking space. When Little Leon got to the Ward, they were so pleased to see him they gave him his own room, so that his laydees could pop in and give him a hug without being seen!   A little bit later on, the Big Cheese arrived with some paperwork, Mummy and Daddy both signed to say it was ok for him to operate on Little Leon.  Nursey Steph arranged for Mummy and Daddy to have a look on the Childrens Intensive Care unit, so that they wouldnt be afraid when they see Leon full of wires and drips and beepy things tomorrow night.  Nursey Tracy was very cheerful and although there were some very poorly babies, the atmosphere was very calm.

Little Leon and Noel try out the bed for size!

Nurse Steph stamped little Leons pass so that he could go out and he took Mummy and Daddy to Nandos for some burned chicken......  He arrived back, drank some more milky and nodded off for a short nap before Mummy has to wake him up again for more Milky, because he wont be able to have his usual breakfast because he is having his operation.

So now Little Leon is tucked up with his Mummy and Laydees, Daddy is not far away.  They are waiting for Little Leons big important date with the big Cheese and the assistant cheeses.  Woo! he is going to have a loooong sleepi, and when he wakes up he should have a repaired heart and be a proper colour, not Mummys little boy blue!

He says nighty night!  Thankyou for reading Mummys blog, she will keep it updated so that you can see how he is doing.

Love Little Leon, Mummy and Daddy!  xxx

A letter for Little Leon from Mummy

Dear Leon,

I have waited for you to come into my life for such a long time. I never imagined that you would be anything other than a perfect little boy, even with your poorly heart you are my perfect little boy.

You have tought me so much about myself over the last six months. You have given me such gifts, the happiness of sitting and watching you sleep and falling asleep in my arms.  The joy of playing with you and helping my Little Leon discover toys, the absolute fun of bathtime and swimming lessons!  And now you have started rolling around.  I love to sing nursery rhymes to you and watch you laugh at me when we are playing pee po! I feel so proud of you and I love being your Mummy. My heart aches knowing what you will have to go through over the next few weeks to get better, but you have to have the repair, because without it, its a fatal condition and I am not ready to loose my little Leon without a fight.

Its going to be a long day on Monday waiting to hear from your nursey laydees, telling Daddy and me how the operation went.  We have done our job as well as we can, you are as well and as loved and wanted as we can possibly get you, Mr W will come in with his magic hands and do your repair and then its up to you.  You have to keep your heart beating when its restarted. Its going to be hard for you, but I want you to remember that we love you very much, we have lots more adventures to have when you are feeling better.  You have lots of family and friends who are sending love and praying for you and want to play when you come home.

So sleep well my Little Leon, we will be waiting for you to wake up with hugs and love.

Lots of Love

From Mummy XXX

Little Leon and The Big Toddle!

Little Leon took part in the Banardos Big Toddle on Wednesday.  He has raised £100 for the children.

Leon in his Zebra outfit

First of all Little Leon changed into the Zebra outfit that Daddy bought him, woo he looks very handsome! Mummy drove to Harrogate in her Volvo tank singing nursery rhymes all the way to set the mood.

The Spice ladies warming up!

This is Anita in the red top, she was with the spice ladies who warmed up the group with 'head and shoulders, knees and toes.... and twirling, swirling and wiggling and giggling'  Little Leon was jumping up and down in Mummys arms doing the actions with a bit of help!

Leon ready to go with his Big Toddle sticker!

One of the ladies gave Leon a Big Toddle Sticker for his pram, he is very proud of it.  He also has a medal which Mummy hung on the handle bar until she got it home and then she put it with Daddys quizzing medals.

Smiling at Mummy pushing

Little Leon gave Mummy instructions to go and line up with the other children, follow the balloons, they will show you where to go!

The ladies and children ready to toddle

We managed to avoid the rain drops on the way round!

mmmm biscuits ready for the end of the toddle

Little Leon spotted the lovely flower beds

Balloon eye view from the pram cam!

Follow the balloons! Ready steady Toddle!

Leon relaxing while Toddling ......

Little Leon having had 20 minutes of being cute for the photographer at the Harrogate Advertiser decides to relax while Mummy follows the balloons, and goes and cues up for a biscuit at the end of the Toddle!

So thank you again for supporting Leon on his Toddle!

Mummy is looking forward to more adventures soon!

Daddys first Fathers Day!

Well Little Leon let Daddy and Mummy have a lie in until 8am before asking for his morning milky.  He looked out of the  window and Noel pointed out that it was raining, as Leon had promised Daddy fish and chips at the sea side he wondered what to do.  But before he got dressed Little Leon tried on Daddys hat!

Does my head look big in this?

I think I need a smaller size....

Mummy suggested that they stay nearer home and go to the seaside when the weather was better and Daddy could show Leon how to build sandcastles.   So Daddy chose to go to the Hepworth Gallery in Wakefield, it hasn't been opened very long http://www.waterfrontwakefield.com/hepworth.asp  The Galleries are wide and spacious and full of Barbara Hepworths work.  Little Leon enjoyed his tour around and even managed a sneaky touch of the wooden one!

Little Leon then took Daddy for a ploughman's lunch at Copleys farm shop near Pontefract. While he was there Daddy found some little tractors and took Little Leon for a ride around!  Woo what fun they both had, Mummy took photographs.

Left a bit, right a bit... straight on..

BEEP BEEP, wheres the horn!

Move over Little Leon its my turn!

Daddy has had fun on his first Fathers Day! Little Leon made him a card with finger paints, Mummy helped Leon do a picture book on Photobox, Adventures with my Daddy.  Daddy thinks its lovely, very practically Leon also bought a Booful keyring so his keys wouldnt get lost.

Little Leon was so tired he fell asleei in his chair before he got home and Daddy had to lift him carefully into the house.

Happy Fathers Day Daddy!  Love Leon xx   oh and Mummy :)

What does Little-Leon Dream of?

What does Little Leon Dream Of?

It's a question mummy & daddy often wonder about? You know the sort of thing, he's sleeping in his chair and all of a sudden there's a smile (daddy spends lots of time just watching Little Leon sleep...), or a little laugh or a gurgle of delight. What could that be.

Does he dream of being in an enchanted forest, where he and mummy find a magic door, there, just by itself in the trees. Why is it here?, what purpose does it serve?, where could it go? What adventure could be on the other side. Mummy says "go through, lets see what magic awaits"

Now, not being a little child, I don't know what lies through there, I (daddy). can only use my own imagination to wonder what delights they may be there. I'd like to think that its all fun and smiles, a world full of happy memories, filled with laughter, and all sorts of special things. Things like, Chasing Tiny Clanger and eating blue string pudding with the Soup Dragon.

Maybe Little Leon goes to a place where his Heart will be mended and he will grow up to be a big strong young man and get to woo the nurses. (although he's doing plenty of that now!)Who knows where he goes? All I know, is that it makes him laugh and smile, I know that when i walk into his room in a morning and see his big smile, I know he's been somewhere, somewhere away from the trials and tribulations he faces so strongly every day. People ask how do we cope withall that we are going through, well, all I need is a smile from Little- Leon and I know I can get through another day.

Another Smile, another day, Little Leon says, Later dudes......

Look out theres a Zebra Crossing!

Well Little Leons Mummy kept the phones clear on Thursday and eventually got the message that there had been a big important meeting, Leon had been discussed, but there is still no date for the op!  So it is still a waiting game, Mummy and Daddy are mucho stressed, but with the kindness of friends, bringing cake and keeping them company, they are managing to make it through another week!!

Noel and Leon waiting for the phone to ring!

So, that means the Big Toddle is still on!  Woo, Little Leon is going to catch up on his cuteness sleep and break out the Zebra outfit that Daddy bought, (yes Daddy bought it!) and go and make some new chums!  He says its not too late to sponsor him if you have a bit of spare change!  He has made £40 so far!  Can we get it to £50 by next wednesday?  Little Leon says hes off to look in Grandad Johns wallet if he can get past the moths!!   http://www.justgiving.com/Little-Leon

Little Leon keeping his card safe!

Little Leon got a very special delivery from Auntie Jess and Uncle Manir, who live near the big smoke, it was a card with a poem on it.

A Hug For You

If I could post myself

I'd land upon your rug

and jump out of the envelope

to give you a big HUG

I am too big for that,

so whenever I'm not there,

this is to remind you

just how much I care.

Little Leon says woo thankyou, he'll keep it safe in his life story book.  

As well as getting special deliveries, Leon has learned a new skill, he can make his mirror sing by rolling the little barrel at the bottom! Mummy thinks the little boy in the mirror has helped!!

Is that you little mirror boy?

Look at me, I'm so funny!

Just roll out the barrel....

So now he is playing to all who will listen!  Perhaps Mummy should see if the Albert Hall is free......  or even send him for lessons with Antonio!  http://www.antoniolulic.com  Daddy says he oozes cool and Mummy is wondering when hes back in the frozen north for gigs and beer?

So back to sleepi for Little Leon as he shows Prince the best way of catching cuteness as you sleepi!

Little Leon joins Twitter!

Little Leon instructing Mummy to sign up!

After spending his unexpected day of freedom drinking milky and snoozing, allowing Mummy and Daddy a quiet meal in Frankie and Bennys to calm the nerves, (and cuteness to waiting staff!).   Little Leon instructed Mummy to join Twitter, she has resisted until now, but it seems Daddy is spending a lot of time tweeting Claire Balding and Mummy is wondering if Antonio Banderas wants to follow Little Leon...... 

@littl_Leon   

As soon as she has mastered the art of Twitter, Little Leon says it is easier to keep people up to date on his adventures along with his blog.  Daddy says a famous boxer has been tweeting about him in spanish!  Hola! and Stevo knows about him too, woo, how much fun is that!!  He'll be pulling on his Trinity shirt just as soon as Daddy gets down the shop and finds one in his size!!  Little Leon is wondering if people will want to know about Noel and the cotbed gang as well, he says tata for now, he's off upstairs to tell the gang!

xx

Thank you and the Big Toddle

When Little Leons Mummy started writing about his story she had no idea that sooo many people would want to read it and keep up with Little Leon and Noels adventures.  Mummy wants to say a BEEEG thank you to everyone who has supported Little Leon and his Mummy and Daddy over the last six months with good wishes, cake, offers of baby sitting, more cake, coffee...... and cake, oh yes and more cake!

Frustratingly the surgery has been cancelled this week, however, its better to be working in a safe environment, if Leons Mummy goes to work and isnt up to par, she can call an extra break, major heart surgery you need to be on your metal everyday. So we all hope that the Cheeses Registrar is ok soon and normal service can be resumed.

Little Leon and Noel are still packed and ready to go, in the hope that there may be a spot later in the week.  There is a meeting on Wednesday to schedule surgery and Little Leon hopes that the Big Cheese will put his name down again, because Mummy and Daddy are very stressed by the whole thing!

Mummy is going shopping for a new pair of shoes for Leon, he has grown out of his lovely tartan shoes that auntie Sarah bought him, and she thinks she has found just the pair!

Funky Shoes!

Little Leon is sitting in his dohnut playing with Daddy and his Jungle Toys!

Little Leon was worried he wouldnt make the Big Toddle next week, maybe he will after all, but if the Big Cheese calls for him again, he is going to do it with Mummy, Grandad and invite his friends to join him dressed as jungle animals and have a pic nic at the end!

See ya later alligator!   

XX

What happened to the Big Cheeses Registrar????

Well, Little Leon and the Cot bed Gang partied the night away, with the 'see you later alligator' party, all the bears and rabbits were looking a little worse for wear this morning and even Little Leon slept in until 7am!

Little Leon and Mummy packed his bag with jimmy jamas and his favourite toys, a bit of milky and a snuggle blanket.  Daddy and Mummy packed a bag, loaded the car and set off via both Grammas house.  They had just got to Grammas house when Mummys phone rang.  It was one of Little Leons Laydees  from the hospital who said the big cheese has cancelled his operation on Monday because his Registrar has hurt himself! He said it would be unsafe to operate. Mummy suggested she could help or give him a perching stool!  But they are going to ring 'sometime' next week when they know what is hapening.

Little Leon is wondering what happened to the Big Cheeses Registrar? perhaps he was base jumping or extreme golfing, Leon would be upset if he just got up and stretched and hurt his back!!!

So, once again we wait, Mummy and Daddy are in meltdown with stress and Little Leon is having a kip wondering what all the fuss is about, because the Big Cheese will get to him soon enough!

Little Leon wondering what all the fuss is about!!

Little Leon gets a very special invitation....

Yesterday Little Leons Mummy got a phone call from the Big Cheeses secretary who invited him to go into the hospital to have his heart repaired and to stay with the lovely nursey laydees.  Leon is very excited.  He visited today for an assessment to make sure that he is fit for surgery.

So very early  Daddy started the car and took Little Leon and his Mummy to LGI.  First of all Nurse Liz filled in some paperwork, then she took some swabs to make sure that Leon doesnt have MRSA.  She weighed him, 18llbs or near enough, he has been drinking lots of milky!  and 73 cm long, he is going to be tall!  Then she sent Little Leon on an adventure trail that went all over the hospital to X-ray, Blood tests, ECG where Leon impressed the Technician so much she gave him a lovely sticker with a red fire engine that says  'Ive had an ECG'  and finally Bagel Nash!!

Little Leon impressing the lady for a sticker!

Little Leon stopped by his laydees on Ward 10, they are looking forward to welcoming him next week when he comes back from Intensive care.  They have lots of notes about what he likes to play with, who he likes to play with and that he likes lots of cuddles and gives lots of cuddles!

Little Leon briefing Noel on the adventure while the cot bed gang look on.

So the order of the week, Sunday Leon goes into hospital and stays the night with his Mummy, Daddy and the laydees.  Then its a ride down the corridor to see the big cheese, who will be waiting with the assistant cheeses to repair Little Leons heart. It will take about 10 hours to do the whole repair.  Its going to be a long day for Mummy and Daddy!  Then Little Leon gets his own personal Nursey in Intensive Care, his stay there depends on how well he is.  Then when they decide that they have had enough cuddles and have taken all the drips, lines and ventilator away, he will have another ride to High Dependency, where they will give more cuddles and lots of care from the laydees on ward 10.  After they get fed up with cuteness they will move him up the corridor (nearer the sensory room so Mummy can play!), to his own room before they send him home to the Cot Bed Gang, who will look after him from there with Mummy and Daddy.

With luck and a prevailing wind, Little Leon should only need out patients appointments after that, but its too early to say at the moment.

Noel is also excited and has packed his bag ready to go to the hospital with Little Leon.  The Cot bed gang are organising a 'see you later alligator' party for Saturday night, yes a bring your own milky one at that.

Little Leons Badge!!

So its going to be a long hard week for Little Leon and Mummy, Daddy and all Leons friends.  His normal cuddle and cuteness service will be resumed as soon as possible.

Little Leon says keep looking at his blog because Mummy and Daddy will let you know how he is and where you can send your cuddle thoughts!

Today is my Half Day!

Woo!  Today is Little Leons half day, hes not one and not none!

Little Leon celebrated with his friends at baby massage, there was cake and milky, dancing and  singing, oh yes and massage!

Little Leon loves to swim, and a few weeks ago a photographer called Mat West came to take photographs of Little Leons class.  He has kindly given permission to reproduce the images he took.  He has a lovely website of work.

Mat West photography

Little Leons Mummy stealing kisses!

Little Leon wearing his baby warma to stop him getting cold

Thats my duck, but I just cant seem to grab it

Little Leon wiggling and giggling in the water with Mummy

Little Leon has a Floaties badge that Mummy has stitched onto a towel, Mummy has a towel with swimming badges from when she was little.  She is looking forward to taking Leon swimming with Daddy.  He likes to swim and when he was younger was a diver.

Little Leon hopes you like his swimming photographs, Mummys favourite is the top one, which is yours?

Time is nearly up for the petition! Little Leon says sign it now!

There isnt much time left to save our surgery!


As you may have heard / seen in the local media there is a move to close the Children's Heart unit at LGI and move it to Newcastle, a move that in my eyes would have catastrophic consequences for many families.As the consultation period is nearly over I would ask that, if you could, you would sign the petition, to save the unit and keep it in Leeds, on-line:-  Petition here 

Now I know you get a lot of this type of request from various sources for different things, but please just take a couple of minutes to look and sign this. I know that with it being a Children's Cardiac Ward a lot of people with think that it's not relevant to them, A year ago i would have been one myself, but situations can change very quickly. Unfortunately,I have spent far too much time in this place with my Boy this year, with a prospect of lots more to come.

I'll just leave you with this thought.. Leeds Children's Cardiac Unit, I need it, you might! 

Little Leon says sign up to save his nursey laydess!

Bob T Bear was wondering if Little Leon has a Dinosaw, sadly Little Leon hasnt got one, unless, he says, you mean his Mummy! its ok she has some hair dye!  He is hoping that he meets one as lovely as Dilly, Bobs friend) and that they can be great friends and have lots of adventures with the  cot bed gang!

So far its very quiet in the cot, Little Leon is resting, and the gang are discussing which take away to use to bring dinner.  It seems that every time a menu is pushed through the door, they add it a pile near the fridge, getting Leons Daddy to call, the takeaways are on first name terms with Leons Daddy!  They are avoiding salad and beansprouts!  Bears don't eat salad according to Noel!  

Little Leon says Hello laydees and genteelmen

Leon getting a head start with the milky for the pic nic

Mummy is trying to organise a Teddy Bear pic nic for Leon and his friends during the summer, so that they can bring their Mummys and Daddys and have an afternoon of fun with lots of food!  So far they are struggling to get a date because everyone works different shifts, I'm sure they will manage to sort it out soon.

Little Leon says thanks for signing the petition  on behalf of all the boys and girls who badly need the unit to stay open.  XX