Little Leon and the Balloon man!

Little Leon had his balloon angioplasty three weeks ago, that involved putting a wire from a little tiny cut in his groin, up through the femeral artery and into his heart.  Then Mr T put a camera in to see the pulmonary artery, then put a balloon in to blow up a little bit to make it bigger.  Daddy insisted on a scan before they let Leon coome home from hospital to check there wasnt a balloon dog where his heart should be!

when his cousin was told he had been fixed again, she said, will it make him crawl faster........ Well, yes it did, his Mummy is having trouble keeping up with him, she says if it gives you so much energy she is going to book one for herself and Daddy! So Mr Thompson, the balloon man, who doesnt do childrens parties with balloon animals, said that hopefully that should see Little Leon through a couple of years before he needs any more surgical intervention.  This made Mummy and Daddy very happy, and they have done much celebrating with chocolate!

Do I look stuck to you.........!

So Leon has been making up for lost time, he is a one boy havoc machine, he has a particular like for the washing machine, Mummy says he spends his time loading and unloading it!  Not to mention loading and unloading the pan cupboard... oh and banging the pan lids together, and getting a spoon out to bang on the pans........ Daddy is starting to worry that Little Leon will be a drummer and not a guitarist, perhaps they need to send him to stay with Uncle Elcoates?   But not allow him to teach little Leon how to fry eggs..... too risky.......



This is the same size mobile Uncle Tony had years ago....with the same reception!



Little Leon took Uncle Eddy and Mummy and Daddy to lunch on sunday, Daddy paid of course because Mummy had taken Leon to the bank and he had given his spending money to the nice lady, who said she would take care of it in his bank account, but that wasnt before he had been out and chosen a new Coupe Car!   It has a little horn, headlights that rattle and lovely eyes, oh and a little boot at the front to put a dummy or small toy in!  Woo Leon is so proud when he drives around the living room in it.  

This is my new Coupe..... Bruuuuummmmm!

Little Leons mummy is back to work and often goes far far away, but not as far as far away Gramma, she writes letters to Leon and Daddy, telling them about her adventures and also Skypes them in the evening so she can catch up on whats going on with Little Leon.  She is hoping that there is reception in deepest North Wales next week, or it will be a very lonely week for her indeeed.  Little Leon sugested that she needs to take a bit of sewing with her to keep her happy.  He might even sneak a picure of himself in so she doesnt forget what he looks like!  So Daddy will be looked after by Little leon, he is going to make sure he gets his Milky and buscuit for supper and goes to bed at a reasonable time,  Leon too!

Swing me!   Higher, highter......

 So Little Leon has been making the most of his Mummy being at home, visiting friends and seeing Gramma for a  free lunch!  Tomorrow is Gramma and Grandads birthday party, they have a cake with candles, Little Leon says they can only have ten candles because if they put as many on as they really need they will be contravening  a fire regulation!  But Mummy and Auntie Nic will get to see firemen as they come to put out the blaze........ Best not, ten only!

This is how you blow candles out...... Just put your lips together and blow.....



You really think a gate will stop me.......?

Little Leon is going to the rugby at Wakefield on the 11th March, he is going to say Hi to announcer Phil, and Mrs Phil if she is there, he says he has been saving a hug for her because Mummy says she is a lovely lady.  Little Leon likes Laydees!  He is hoping Daddy Cool is there too because Mummy likes Daddy Cool!

Little Leon is taking his Coupe for a spin and says Catch ya later dudes, he is very happy to be feeling so well.  Thanks to all who are sending regular messages and the folks who read his blog, as Vinnie Jones onece said...... its emotional.........

Little Leon and his heart friends show it like it is...

The Heart to Heart Charity Ball which was held on the 10th Febrary 2012 raised a whopping £7100 for the Childrens Heart Surgery Fund.

Little Leon showed his scar to the world in this presentation.  it is eight minutes of hard to watch without crying, but it also underlines why Leeds Childrens Cardiac Ward should not be closed, as all of these children had their operations there and owe their lives to the surgery and nursing teams.

Little Leon says wear RED for Valentines Day and support CHD awareness!

February is Congenital Heart Defect awareness month.  Little Leon and friends have been busy telling everyone that will listen what CHD is and how it affects their lives and the lives of Heart Mummies and Daddies.

Leons Mummy wrote about being a heart Mummy.......

Much has been written this week about CHD Children, but what is it like to be a CHD Mummy or Daddy.
Well we are normal parents with added extras... Like having a permenant hospital bag packed, just in case. Looking for holiday destinations near a hospital that specialises in paediatric cardiology, making sure insurance covers us in an emergency. When we go to groups and meet people we need to check if anyone is ill, most children just shrug off colds etc, but CHD children dont and it takes twice as long to get us all back to normal. Finding a Nursery group that can deal with complex needs and emergencies without charging the earth for it. We have to become familier with medication and trachiostomies, peg feeds and nasal gastric tubes. 

CHD Children are always thin because their hearts work so hard to keep the heart working, it burns up all the energy just keeping going...

Some Mummies dont work because the children are too ill to leave and there is the constant threat of deterioration and further surgery. Are we mad, yes we are, why should any child have to suffer? Are we doing something about it, yes we are, we are fundraising for equipment and research to find out why and how CHD happens so that in the future we can say, we did that for other Heart Warriors, so they dont have to live like us.

It is thanks to the medical staff, friends and relatives supporting us in our daily journey that we are all here today talking about raising awareness for CHD. I have met many amazing people from all over the world who have or know someone with CHD. it affects us ALL, so Little Leon says Hugs to all! Tell your friends about CHD and lets raise awareness today.

 Little Leons heart Daddy wrote:
Being a heart dad (as I have become known) brings its own issues, For any parent going back to work is difficult, but for dads (and yes I know, some mums) going back after a painfully short Paternity leave its hard, throw into the mix a complex heart condition and,well, it becomes a daily wrench. We go to work knowing that there is always the possibility that you may never see your child alive again, you find that your Mobile phone becomes an extra limb, you make sure its ALWAYS charged and always with you.

 

You want to ring home every hour, but don’t. You try to keep the calls to a minimum, but when the missus leaves “you on silent in the bottom of her handbag” the mind works overtime, is everything OK, then when she rings you back after 32 missed calls just to tell you she was having a coffee with a friend and what’s the emergency, you feel a bit daft. Dads don’t do get togethers, our hours of work and the need to be at home make them impractical.

 

We don’t do chat rooms, we’re not good in sharing feelings and emotions, but we do worry, we do hurt, we do panic over the little things, but being blokes we don’t show it. We try to be strong for the other half, we tend to “suffer in silence”, we tend to have a close group a friends who are great but we know they don’t understand. We would sell our souls to the devil (or in my case re-mortgage it) for our children to be freed of the CHD, but we know whatever we do, we are ultimately helpless. How do we do it?, well, I make sure every morning I get a smile from Little Leon, it’s that little bit of a boost the gets you through the day.

 

I was lucky I knew he had a great surgeon in Kevin Watterson, after all he saved my dad's life some 20 odd years ago by doing a Triple Bypass at Killingbeck, but I still knew fate lay with Leons own strength and the hopes & prayers of many people around the world. We tend to be in the background, We try to support the Wives / Girlfriends by being there but not getting in the way. We try to be the voice of reason, looking at things logically rather than emotionally, trying to put things in perspective, trying to be “sensible” .

 

We have the weekends to do things, to make the most of what time we have, I have met many incredible people through Leon’s condition, all unique, all possessed with a strength of character that some can only dream of, I have said in the past that as Heart parents we are all members of a club that no-one wanted to join. That is so very true, but lets make this club famous, Tell the world we have something special, we have kids with hand crafted hearts, with parents that are strong beyond belief, and we all share a special bond. CHD Awareness, bring it on...

 

 

So wear red on the 14th for little Leon and his heart buddies and heart angels.

 

He says if you send him a photgraph of you wearing red he will put them on his blog

Little Leon has been busy.......

Wooo!  Hello again,

Little Leon told Mummy off for having fun with him and not updating his blog!  She says she is very sorry and will go sit on the naughty step for an hour if she can get the cat to move over.  Tiggur is sitting on the step keeping out of Little Leons way, hes crawling!

With increased crawling comes increased clumbsiness, the heaviest part of his body is his head and he keeps banging it..... Doh!

 

Mummy is unable to do the washing because I have made a boat out of her wash basket!



Little Leon has made a boat from Mummys wash basket and gets upset if she trys to get him out, so she has stopped washing, Leon has decided he likes the washing machine, he sits with his head on the door laughing when it spins!  while he is waiting for the spinney spinney, he sails round the kitchen in his boat with Mummy pushing and making sure it doesnt capsize!



Aunite Sarah snuggled me to sleepy!

Last week Mummy took Leon visit Auntie Sarah, she has had some fabulous news and is expecting a new arrival to her family hopefully in May.  We celebrated with cake and Earl Grey tea.  then she sang songs to Leon and he fell asleepy, curse those heavy eyelids! he wanted to explore her washing machine!!!



Woo mexican wave.....!!!!!

This Tuesday Leon went back into the hospital, Mr Thompson, the balloon man wanted to do a catheture procedure and get some pictures of the inside of his heart.  He did wonder how he was going to get a film crew in there...... Leon thought he was just visiting his laydees, they looked after him very well, Mr T managed to stretch the Left Pulmonary artery a bit bigger, that has given Leon a turbo bost Woo that suprised Mummy and Daddy, they have to run to keep up with him now !   Leon was unsettled on Tuesday night, mummy cried because she had to leave, but Leon was fine, the doctors let him join a meeting in his pram, woo they were boring,so he went to sleep............   When Mummy and Daddy came to see him in the morning he was with the Liaison nurses, they needed some help in the office....  Mr Thompson says Leon should be fine for a while now.  He can be a normal little boy, wooo watch out world here I come.......



Note to self... be careful when you stand up in your boat.......

Leon is learning to stand up now, crawling is getting too easy,   Leon waits until Daddy is working on his pc, he thinks Leon is sat playing and then he stand up and try and grab the cable, wooo he gets cranky when you pull his cable out!  He has to play with Leon then, its much more fun than boring work!

Dr Noel in the house



Hiding me.......

Little Leon is getting up to mischeif and Mummy and Daddy have had to put up gates and locks on the doors of the washing machine, cooker, wine cupboard, fridge and under sink..... woo they are fun places to play.......  As you can see little Leon likes to hide and play in as many places as he can!!



Woo crawling me!! One handed!

Well Little Leons Mummy has gone back to work part time, she isnt really wanting to do that but if she doesnt Leon wouldnt be able to go visit far away Gramma in a few weeks, she writes letters to him and Daddy and gets home as soon as she can on Fridays, Leon is usally in the pub with Daddy and Uncle Ian, chatting and smiling at the waiting Laydees! 

Little Leon will be back with fundraising news very soon.

Bye for now :D

Love Little Leon XXXx

Well its been a busy week for Little Leon, he has been attending nursery while Mummy has gone back to work.  He has sung, danced, clapped, played with rings, played outside,  hugged the laydees and played with his little friends, not to mention eating plenty of lunch and snacking on cake!

Mummy went to work in York for two days and had two days in Consett, the hotel had a swimming pool!  That doesnt happen often, sometimes there are mice..... smells.... odd people..... nasty food...  Sometimes she bumps into famous people in Marks and spencer! 

Daddy fencing with sticks!

Daddy has done a great job of looking after Little Leon, or maybe it was Little Leon looking after daddy! they had lots of fun, Leon was showing Daddy how the elephant blew balls out of his trunk,  So they both sat feeding balls to the elephant and the elephant kept blowing them out!  Then they got the musical instruments out and played a tune!  Woo so much fun!



Sushi?

Little Leon hasnt been eating much lately, but he has been drinking lots of milky, and seems to have an addiction to mini breadsticks!  so Daddy stocked up at Sainsburys, and they were on offer! Woo hoo! 

Daddy because Mummy is away. You get the beer, Ill ring for pizza!

Mummy came home and Little Leon was soo pleased to see her, he waved his hands, bobbed up and down and gave her a huge hug!  Mummy was very pleased to be back, she tried to read Leon a story, but he took the reading light off the book and started waving it around like a magic wand and laughing and laughing....... So the Owl and the Pussycat will have to wait until another day......

The service was sooo slow I went to sleepi!

 Saturday Mummy Daddy and Little Leon booked a holiday to go and surprise Far away Gramma, Daddy was very clever and worked out the flight times, where to stay and when to get there, Leon was so impressed he fell asleep while his lunch was made! He said it was slow service.......

So Mummy is making a list so she doesnt miss taking anything that Leon needs on his holiday.  The cot bed gang are to decide who is going with Leon.....  Daddy says they will have a raffle, but we might let you decide!

Little Leons Mummy has gone back to work.....

Well today little Leons mummy went back to work, she had to rummage around in the back of her wardrobe for her corporate identity! It was washed and ironed and put away with Her uniform!!! Woo the trousers still fit !!!!

She said to leon that he had to go to nursery with Daddy because If he cried she wouldn't go, seeing that she has run out of munny and Leon wants to carry on with his singing and swimming, he says she has to go!!!

So Mummy spent the day with the lovely Sharon who made sure Mummy had cake in the afternoon, so that she didn't miss her little kazoo too much, but she did anyway!!

So mummy has to go to Co Durham for two days to work with Ges and teach people how to move biomechanically in an ergonomic way..... Woo it's like she has never been away!!!

Mummy loves her little kazoo! She will be home Friday for more fun with Leon and Daddy!!

Noel sends a message.....

Hello, Hello? is this turned on.........  Ah here we are.......

Noel here, I dont often get to have a go on the pee cee, usually I order the take away for the cot bed gang from bear necessities.....  they only deal in growls, so we have to have a whip round, the rabbits are usually asking for extra carrots and the mousey wants cheeses on the pizzas!

Can you see my special heart??

Its been an amazing year, I flew on an Areoplane and moved from my home in New York to Normanton, Via Liverpool.

Looking after Little Leons snuggle blanket!

Little Leons Mummy adopted me from Jenny at Bummer bears, so Leon could have  a friend when he went into hospital, he was a very poorly little boy when I met him, he was soooo blue and his hands and feet were always cold.  Sometimes he couldnt drink all his milky because he would fall asleepy mid drinky....

Noel meets Little Leon

He is a lovely boy, he likes to snuggle my fur, its ok, I dont mind, as long as you dont tell everyone.....

This is me arriving with my ruck sac

I settled in well, the Cot bed gang were glad to have an international friend with different stories to tell.   We have lots of bear stories in the US.

Little Leon before we went to hospital

So I had a great time with Little Leon and the cot bed gang, we would go to bed and when Mummy and Daddy had gone to sleepy, we would play pirates, cowboys and bears, and going on a bear hunt, but without the scary ending!   They never know what we get up to!  The take away man sneaks out meals in with a magic key and we always clear away before Leon and Mummy wake up.   Thats how we keep our bear like figures!!

No suitcase for me, its a paper bag...

I travel light and when it was time for Little Leon to have his surgery, Mummy packed my surgeons outfit in my ruc sac and off we went to the hospital.  Ward 10 welcomed us on the 26th June, Leon, Mummy and me had a great night reading stories, looking at the stars and singing rhymes.  When Leon fell asleepy Mymmy and me sat and cuddled, she cried a bit because she was worried about the operation, but I gave her good big hugs.

Dr Noel attending!

So operation day arrived, I left Leon with Mr Watterson and went to sit on his bed and wait for him to come back, woo it took hours and hours, I had three kebabs while I was waiting.....  When he came back he was really poorly but was a lovely pink colour, Mummy and Daddy were very relieved to see him.

Me and my new family.....

This is a lovely portrait of Little Leon, Mummy Daddy and me, it was only two weeks after Little Leons surgery,  We have had so much fun since he came out of the hospital, I always go with him when he goes for a check up.  The nursey laydees are always pleased to see me too.

onk onk.. dats my dose.....

We love to have fun and Little Leon likes to pull my nose!

Dr Noel..... Xray of the heart 

This is me dressed as a surgeon, Mr Watterson might have needed an assistant and I wanted to be ready when he called!  

Looking after Little Leon

 Little Leon had a birthday party and naming ceremony in November, we all got spruced up and the family came and met us both, Leon was very popular of course, but I got my share of hugs as well.  Well I am irresistible!  I got dressed up for the occasion, this is me in my Tux.  Mummy and Daddy are very relieved that Leon is well, although he needs more surgery soon, we will both go through it together!

Just call me Bond.... Noel Bond.........

Of course I like my Hunny shaken not stirred, a bit like Leons milky. Mummy had ordered a cake and surprised us all with an amazing cake topper with Me and Leon on it made from icing.

Little Leon and me on his Birthday cake!

2011 has been both a difficult and fun year for us all.  The cot bed gang are going to keep looking after Leon when Mummy and Daddy are in bed.  Mummy goes back to work part time soon, so one of us is going to go with her and report back to Leon that she is alright. She says she will write postcards so he can see where she is working in the world.

2012 is going to bring its challenges as well, Little Leon needs more surgery, but not as complex as the first time, but all his friends who pray and send their positive thoughts and good wishes are going to get us through, Mummy and Daddy are feeling more positive and are looking forward to watching Leon grow stronger and have fun with his pals and little heart buddies.

Me, I am going to go for a holiday at Paw Ridge, its like a Holiday camp for bears!  Mummy prefers Centre Parcs, but I am going to give them both a try!

HAPPY NEW YEAR TO ALL    Little Leon and I are going to have lots more fun next year!  Watch this space!