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