CHD Awareness Week 7 - 14 February.

CHD Awareness week 7 - 14 February


Imagine the scene, after years of trying, (with some heartbeaks inbetween) along comes the long awaited Little Leon after a reasonably uneventful pregnancy, Arriving on the 7th December. to all intents and purposes Mother and baby are doing "well".

















So we spend the day telling friends, family and in all honesty, anyone who would listen about the new arrival and thinking how lucky we were. So Helen & Leon Stay in hospital overnight and I go home to get my "last" night of sleep before we bring him home the next day.

Or at least that was the plan...........

The next day it all goes pear shaped. Leon has a lousy night and wouldn't feed, the Breast Feeding stasi had pretty much blamed Helen and said there was no problem she just had to try harder!  (But that's a whole other story!!!) Luckily for us a rather observant Paediatrician had picked up that something "wasn't quite right" and wanted to check out a few things, so they would just take him to SCBU and do a few checks. Whilst a little concerned we didn't really think that much of it. It was only when I went down to find out what was happening and when we could go home, i was met with a a group of very concerned medical staff, crowded round an incubator all looking very concerned and having animated discussions. They advised me that they were tyring to get an Intensive care bed and that we would be transferred to Leeds general Infirmary, I didn't really take in what they were saying, it just didn't make sense.
How serious is it? i asked,  "expect the worse" they said.... Words, no parent should ever have to hear.
Within an hour or so the embrace team arrived, Leon was placed in the space age pod and blue lighted, we followed, i don't remember the drive or much else to be honest.

The next few days are a blur, Leon was in HDU for a few weeks and in hospital for quite a while.

He was Diagnosed with Tetralogy of Fallot, ASD, pulmonary stenosis and a PDA.

At six months old he underwent a 14 hour operation to repair some of the main issues and has had further procedures, all of which documented on the blog  http://www.little-leon.blogspot.com and elsewhere.

We were lucky, yes, lucky. Leon has survived and, whilst he will need more surgery. he is in reasonably good health. The harsh reality is that Congenital Heart Defects are the biggest child killer of all, more than all the cancers put together, but get relatively little funding. CHD is more common than you think, Approx 1 in 100 kids will have some form of a CHD, Leon's condition is one of the rarer ones, but, it is more than likely you will know some-one who is affected by it.

Help us to raise awareness, wear Red on Friday 7th, Share this blog around during the week, don't be afraid to ask questions about it. If you can spare a few quid donate to either the CHSF, or  message me and i;ll send you details,

Leon Says Thanks for all the support over the last three years...

Woah, where did January go?

Well, where did it go?

Oh No, I've missed January'

Last time I looked it was christmas and New Year. Where does the time go. 

It's been a busy month month in the Little Leon household with lots of things going on and somethong new and exciting happening.

 Christmas day came and went, Little Leon had great fun he got lots of lovely presents and had fun at Uncle Tony and Aunty Nicolas, eating, laughing, playing... ooh what fun!

Just after Christmas Leon was invited for a lunchdate with Aunty Jess & Uncle Manir, so off we went to York to have Fish & Chips. Uncle Manir loves Fish and chips and eats them whenever he gets chance!

Leon Shows Jess & manir the finest points of Cbeebies
 

Daddy got very spoilt at christmas, mummy bought him an new Camera, so expect loads of super pictures over the Spring and summer, (he promises not to bore you to death with them!)
 Heres a couple he snapped of Little Leon to be going on with!

Daddy has had some new body art, given that he owed Leons life to the skill of the wonderful Mr watterson who literally had his heart in his hands  The symbolism of which is shown here in some great work by Rich Peel @Scorpio Tattoo in Selby.

His heart in their hands! 

 Now, the really exciting / scary (delete as applicable) news.
 After Mummy decided that she had had enough of working away from home and parted company with her former employers, She has made the bold and brave step to "go it alone". So to that end we give you..... Big Fanfare please Leon.....  


                         

Yes the scary move of setting up her own company, HDP Occupational Therapy Ltd.

Over the last 6 years Helen has built up a wealth of experience in Training and assessing and is now going to put these skills to work. So if you need a tailored solution for all your Occupational Therapy needs contact us, we can Offer Hourly, daily, Weekly or contract rates. We offer OT services, Equipment use training, Peadiatric First Aid Traing, Mobility assesments, so if you need an OT call HDP!

More news on this later, we will have a website and brochure up and running shortly, so keep your eyes peeled....

Apart from this we have a few exiting things coming up this month, Wear Red day! (more on that this week), The CHSF Valentines Ball) and Little Leon is off the see Grandma and Grandad soon as well!

Leon says Nap time now

Laters peeps!

A big Weekend and A Great Man Retires!

Well, after a fab birthday with loads of super presents, Little Leon decided he better take Mummy & daddy out today, So he packed up the Moo's, Mini Moos, Mama Moo, Not a cow, and headed into the big City of Leeds.  He took mummy a daddy for a coffee, He likes his mini Cappuccinos!

Of Course you can;t have coffee without cake, so, cake was had! and it was yummy!

Now as luck happens, just outside the coffee shop the wonderful Ruby Macintosh was performing some quite simply splendid christmas songs, Little Leon has decided he likes Ruby, which is good because daddy does too! He says you should check out her website and buy her new album! http://www.rubymacintosh.com/

Ruby Macintosh, live at the Hop!

After to coffee it was on the the main order of the days entertainment, The CHSF Christmas Carol Concert which was combined with a celebration of the retirement of Mr Kevin Watterson.

The concert itself was a fine affair, various choirs assembled and gave us some cracking entertainment, probably the highlight being the Snowflakes signing choir. This was co-ordinated by one of Leons heart Buddies Lyall's mummies, As the name suggests it was a combination of signing and singing by a group of children that all face their own challenges, and I dare say there were a few tears shed during their performance.

Now, I often despair in the youth of today, they don't often get good press and, to be honest they don't help themselves a lot of the time, but, today, 3 young people helped restore some of that faith.

Firstly, young Ebony,

Not only is one of Leons heart buddies, but she has had a lot of other things to contend with over the last year or so and has a bit of a rough time  (err bit of an understatement there), but today Ebony got up in front of several hunderd people and gave a reading. Take it from some-one who has done, that is no easy thing to do, and for one so young took a lot of courage, but she took it in her stride and did everyone proud.

2. Joe Barry and  3. Kimberley Botham

Joe & Kim with Mr Watterson

Joe Barry, well what can you say. I've not known Joe long but I quite honestly say he is one of the most remarkable young men i have come across. He first came to my attention during the great SOS campaign where he spoke eloquently and passionately in defence of the Surgery team at LGI. To see Joe here today was nothing short of remarkable given he underwent Open Heart Surgery only a couple of weeks ago, what a guy! He is thoughtful, polite and a real credit to his family.

Kimberley Botham:- The lovely Kim, I;m sure Little Leon has a soft spot for Kim as he kept trying to run to her all afternoon. Kim gives us hope, hope for the future for Leon, for not only is Kim kicking CHD's butt, but she has qualified as, and works as a teacher, showing us, that no matter what your condition, with dedication and Hard work, you can succeed in whatever you try.  Kim also likes to party, so at;s a big two fingers up to CHD, and away we go..

If Leon grows up with the qualities of these three "young 'uns" have shown. then we shall be happy parents.

And to the main event. The retirement of Kevin Watterson.

What can I say. A man that have saved and given life to both my Father and my Son, a quiet man, a humble man, a dedicated man. How do you say thank you to man like this. Well, we did, and have several times, and as someone else said, if we were to say thankyou to him every day of our lives it still wouldn't be enough. All we can do is wish him well in his retirement, he has recently discovered he is to become a grandfather, so, he has a new job, one he will be as great in as his last one i am sure, and he takes the best wishes of hundreds upon hundreds of grateful parents, grandparents and children with him.

So Little Leon gave Kevin a present, hopefully one that Kevin will appreciate the Irony of, because you always have to keep in practise! We said our thanks (again), passed on my dads best wishes as well and left kevin to his adoring fans. I kid you not, it was like a meet and greet for a pop star!

By now little Leon was all tired out, so we made our way home, Leon was asleep after about 30 seconds in the car, and has now retired to bed, recharging his batteries, for he has to meet the Lovely dr Brown tomorrow for his MOT, and will be calling in to see all his nursey laaaaydeees to stock up on some hug time.

So, it's night night from Little Leon and sheee you shooon!
xxx

Little Leon Is Three!

Well, That's when it all started, on a very very cold Tuesday three years ago. Little did we know what a ride it was going to be. Sheer Joy to your worst nightmare in the space of 24 hours and to all points in between in the last three years. 

I'm not sure what you women complain about when it comes to labour, at least you get a bed, I was stood up for the best part of 7 hours, mind you I did nip outside for a bit to say congratulations to my friend who coincidentally was there at the arrival of his youngest son on the same day, so a Happy Birthday to Ethan as well!

Birthdays are about celebrating, particularly the celebration of a life. Leon for one so young has been through so much, but (nearly) always does it with a cheeky smile and a hug.

He has a soft spot for the laaydees, especially nurses, maybe that's why he doesn't complain about his (all too frequent) visits to hospital. 

That said we have been lucky (!!), we have met new friends that we probably would not have met, and have certainly gained a different perspective on things as well. We try and live life as close to normal as possible, easier said than done at times, but i think we do ok.

Helens work took her away from home pretty much every other week, so it was left to me and the the little dude to amuse ourselves, always a recipe for trouble that!. I don't know if i;ve been a "good" dad or not, I hope I have, i;ve done my best and that's all any parent can do. Helen is looking for a change of Job so she can stop us getting into trouble, so if anyone is looking for an OT, leave us a message!!!

As Leon has got older he has certainly developed his own personality, somewhere between a Just william and Just a Gigolo!  He's a bit behind developmentally, but, hey, if i'd been through what he had, so would I.

He'll catch up i;m sure, but if he doesn't so be it, as long as he's happy i really don't care.

Leon Loves spending time with both sets of Grandparents, Knitting Nana (Helens Mother) spoils him by cooking his dinner most Sundays, where he goes to see his Cousins Jasmine & Cara, and  he teases my dad by waiting until he is just about to nod off and going WAKE UP!!! poor Grandad....

Is It Leon or is it Daddy?

We have even managed to squeeze in a couple of Holidays. Leon loves the Sun, the Sand, The pool, the Girls (or is that daddy....) Err, ....

Life is for living, Leon has taught us that much, not that we didn't already know that, but sometimes you need something to come along and make you realise that it is, and they are not just words. 

Leon:- Daddy carry the bucket.
Daddy:- No you carry the bucket
Leon:- But daddy....
Daddy, No, you wanted it, you carry it!
Leon:- But daddy your the bestest bucket carrier in the world
Daddy:- **sighs**

So, as Three years have passed, both very quickly and agonisingly slowly at times, we look forward to many more birthdays, more parties, more holidays, more time just doing stuff. For those that have been with on the ride, buckle up! we aint done yet!

“One must simply take the days of their lives as they happen. If you spend time worrying over what is to come, which may or may not happen, then you will only be wasting precious days you will wish in the future you could have cherished a bit longer.” 

― R.J. Gonzales, Mundahlia

Christmas is coming!

Today was the Childrens Heart Surgery Fund;s xmas party.

There was the usual scenes of kids running around, playing, laughing, crying, eating and generally having loads of fun. Sounds like a scene repeated up and down the country, so what's so special about it you ask?

Well, the room was full of children who have either had, or will be having heart surgery at the Leeds General Infirmary Childrens cardiac unit. It;s a rare chance where parents and children alike get to leave behind the everyday worries that they go through, knowing that the room is full of people who understand what you are going through or are about to go through. Doesn't sound like a big deal from the outside, but to us it is. We all get great support from friends and family, but, as they saying goes, you will never really understand how it feels until you go through it. I hope that no-one reading this ever has to go through it, sadly I know many have already, but one day, maybe, just maybe......

The CHSF relies purely on donations, the support it gives to families and the unit is immeasurable, so, should you have a spare few bob lying around chuck it either their way or to us and we will pass it on.

To be in a room full of amazing people with amazing stories makes you realise even more how precious the gift of life is and how fragile our grip on it is. Sadly, some little ones could not be there, some to ill to make it, even more sadly, some were looking down from above, but they're never far from our thoughts, especially at Christmas. Leon made the most of the chance to run round hugging all the ladies, saving some extra special ones for the lovely Ebony and Kim. He was a very good boy when seeing Santa, although he's not sure about this being good ALL the time is about!

So, Leon has worn himself out  hugging all the laaaydeeees and has retired to his bed to recharge the batteries ready for next week. He says, Hug your loved ones extra tight tonight, and sends big love to all.
and remember the words of Alfred D Souza

“Dance as though no one is watching you,
Love as though you have never been hurt before,
Sing as though no one can hear you,
Live as though heaven is on earth.”

Night Night everybody

xxxx

To Paraphrase Churchill....

Never has soo much been owed by so many to one man.




Mr Kevin watterson has announced that he is to retire in March.
Now to say I owe this man a huge debt of thanks would be something of an understatement. Waaaay back in the very early 90's he performed open heart surgery on my father, childrens work wasn;t as common in those days as diagnosis was still pretty poor, so he had time to fit the odd adult in his surgery slots, my father being one of those. fast forward 20 or so years, and he was to perform a minor miracle on Little Leon, 13 hours plus in surgery, an operation the great man called challenging and complicated, so I can only imagine how difficult it actually was.

Little Leon & Grandad discuss the finer points of open heart surgery!

Now, it's not just the surgical skills that sets this man apart, it's his dedication,  One of my overriding 

memories after Leons operation was the sight of Kevin, sat at the end of Leons Bed in PICU drinking a cup of tea, making sure everything was as good as it could be, and would not leave until he was satisfied all was well. He is a humble man, quiet spoken, a brutal honesty when discussing your options and chances when it comes to surgery, but has an aura of confidence, that just makes you feel that things will be ok. There were no guarantees, but we felt we had the best man for the job, (after all. He did have a walking testament to his skills in my dad). He has devoted a good 25 years or more to the cause in Leeds, been a great champion of of keeping Surgery at Leeds, and will be missed. We were speaking to his Wife at a Heart Ball, a lady that has (along with the rest of the family) undoubtedly taken a back seat throughout his career, it is now their time, and I wish them a long and happy retirement together,

We will be saying our goodbyes to him, along with many others at the CHSF carol service next week, it;s bound to be a bit emotional, thank you can be such an inadequate word at times.

Little Leon makes sure he has the new surgery teams numbers

Fortunately, Kevin leaves a good team Behind him, Mr Jaber was part of the team that operated on Leon, so there is that continuity, and the new head of surgery is Carin Van Doorn, no stranger to Leeds, and has established a superb reputation throughout Europe, so we can rest assure leon will be in good hands.

Little Leon has a busy few weeks coming up, so look out for the latest updates, It;s his Birthday Next week, the Carol Service, Christmas Parties, Christmas itself and daddy's birthday, so we'll have lots to share. 

If you drop by, leave us a message to say hi.

Laters people...

Sorry it's been a while in updating, but what with illness, holidays and Helen concentrating on getting Leons Heart up and running it been a little hectic to say the least. So just a quick begging letter really, I'LL post a more comprehensive update shortly!

This montage is exactly why Helen has taken leave of what little sense she had and decided to walk over some hot, make that very hot, coals to raise money for the CHSF.
Helen and a load of other fruit bats are going to Stockeld Park on 1st November to raise funds for the Charity that gives so much to people when it is needed. I hope that no-one is ever in a position to need the charities help but sadly too many do. Don't just think "oh i'll never need that", the cold hard facts of Childrens Congenital Heart Disease is that it will affect 1in 100 children and is THE biggest cause of Death in children. It kills more children than all the cancers combined yet receives a fraction of the funding. So, sadly there may come a time when you, or some-one you know will be affected by it and they may need the help of the CHSF. So, if you can spare the cost of a Starbucks or a beer, please sponsor Helen Dory Purdy, and help her to help those who helped us. Be warned though, if she doesn't reach her target, i will upload a video of me from one New years eve bash, and believe me, you really don't want to see that!

A Big big thanks to all who have donated already 

Please use the link below if you are able to spare a few bob!

http://www.justgiving.com/Helen-Purdy2

Laters peeps!