A different perspective .. a blog to read

One of the mum's in the American support group I'm in called Hope for Children with HLHS mentioned that she has a blog and personally I found it quite interesting to read .. www.henrytheblog.com .. a different perspective to what you normally would read on a heart kids blog ..

This is the blurb from the blog the Mum has written .. (I found her straight forward approach quite refreshing in a different kind of way to my own child's blog ) ..

What is Henry (the Blog)?

I could have written a blog about my kid – the one born with a funky heart. But Henry (the blog) is more than just sharing Henry’s story. Sure, it chronicles our lives during Henry’s years in and out of hospitals, multiple surgeries and terminal maternal hysteria. Good times, indeed!

But I put this site up because I think there needs to be more resources for moms of “heart kids.” There are oodles of great websites to learn more about congenital hearts defects (CHD) and you can find several here. I don’t dispense medical advice, I share coping advice. Rather said, I’ll tell you what I went through so that you can breathe a sigh of relief and say, “Well, at least I am not as crazy as that lady…”

Face it, as hard as this is on your kid, it is also hard on you. When Henry was in the hospital the first, seventh, nineteenth time, I really craved the insight of another CHD mom. That’s what I am trying to do here -- telling my story, scars and all. Every CHD mom experiences their child’s suffering differently. I did it in the most selfish way. As much as I obsessed about my son’s health, I also fixated on how devastating this was to me.

Henry’s particular defect is Hypoplastic Left Heart Syndrome or HLHS. I also refer to HLHS as “Henry’s Little Heart Sucks.” My son underwent numerous cardiac surgeries and then a heart transplant in February 2008.

This blog is primarily for CHD families to find some common ground, solace and a few laughs. Turns out staph infections, snotty doctors and g-tubes can produce some giggles. I’ve added some resources so that you can find “doctor approved” information about CHD as well as articles about the impact on families caring for chronically ill children.

Anyway thought I'd share for others who might like a read ..

The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects

Here is a link to an interesting article about - The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects

http://tchin.org/resource_room/CHDSchool.htm

.. sad news day ..

... my Grandad has taken a turn for the worse .. and is now completely unable to do anything unaided ..

.. the nurses have said he has said his goodbyes (it seems) .. and has given up ..

.. which is fair enough at 93 ..

.. he is also now refusing to eat and drink .. and only mumbles yes and no ...

.. last Sunday my Dad took him for a visit to see Nana (who is in a different rest home) .. as he really wanted to go and see her .. he said it was so lovely/sad .. as they held hands for the longest time and as he said even after all that he has been through with her he still loves her .. and the bond is still there ..

.. my Dad is visiting every morning and my Aunty every afternoon ..

.. they are still getting him out of bed .. but each day he deteriorates more ..

... getting old SUCKS!

... and a friend rang to say that a baby in the HC group (who we have helped with since his Mum was pregnant and diagnosed) is having his ventilator and kidney dialysis machine turned off today to be allowed to pass away gently ..

... SO SO SAD !!!

.. so today is a sad news day ..

16-year-old schoolgirl who survived SEVENTEEN heart operations

This is from the site : news updated frequently

Sarah Haselgrove is just 16, but she has already undergone a shocking seventeen heart operations.

The teenager is the longest living youngster in Britain with so many complex cardiac problems.

But despite spending more than half her life in hospital, she is just a year behind at school and will sit her GCSEs next year.

The schoolgirl from Kent, was not expected to live a week and underwent five heart operations in her first year of life.

She was in and out of hospital throughout primary school and has faced three major surgeries in the last six years.

But Sarah has battled on to live a normal life, and even competes at carriage racing at Windsor Castle every year.

She said: ‘There are lots of things I can’t do, so I just concentrate on things I’m good at.

‘I’ve had a lot of time spent in hospital beds, but I’m fine now, as long as don’t overdo things.’

Sarah, who lives with her mother Nicky, 45, father Steve, 51, a nuclear power engineer, sister Holly, 13 and brother Stuart, 18, was born five weeks prematurely with a catalogue of problems including Hypoplastic Left Heart Syndrome.

Children with the rare condition do not often survive beyond infancy and only a few have survived into their teens.

Less than half of Sarah’s heart was working properly and just hours after birth, weighing just 4lbs 4oz, she was rushed to The Royal Brompton Hospital in London for her first operation.

At just three days old, Sarah had surgery for coarctation of the aorta, where the main artery is narrowed and repaired using part of an artery from the left arm.

Mother Nicky, an ex legal secretary, said: ‘She was so small the tubes and machines completely swamped her.

‘We were told it was unlikely she’d survive but somehow Sarah battled through.’

But at just three months old, she was rushed back into hospital again for her second emergency surgery to close a hole in her atrium.

Nicky said: ‘Sarah’s heart had other holes, and was like a piece of Swiss cheese.

‘She was so weak her little body would not cope without major work. There was little hope she would survive but we had to try.’

Amazingly Sarah pulled through the operation, but her first year of life was a constant battle and she underwent three more surgeries, to fit a cardiac catheter, repair her mitral valve, and carry out work on her right diaphragm.

The following year, she faced five more operations, including three sets of heart and lung echoes, surgery to replace her faulty mitral valve, and to drain excess pericardial fluid.

Doctors also fought to save her life after her diaphragm became paralysed and she was unable to breathe. Sarah was also constantly vomiting and had to be fed via a nasal gastric tube.

Sarah kept battling on but at the age of six, after she’d already spent most of her life in hospital, she faced her eleventh heart operation, another cardiac catheter.

Six months later, she had her twelfth and most complicated procedure to date, to remove an obstruction on her aortic valve and close holes between the ventricles.

Nicky said: ‘It seemed never ending. She’d also endured stomach operations and treatment for numerous chest infections, pneumonia and bronchitis.

‘I used to look at clothes for little girls and think, will she ever live to wear those?’

But despite her family’s fears, Sarah, who remembers the operation, never doubted herself.

‘I got a little nervous before each operation but I always knew I would come out the other side,’ she said.

‘It never really worried me. I suppose it’s like a gut instinct.’

Finally Sarah was allowed home to her family but was still not strong enough to attend school, and between the ages of eight and nine she faced two more surgeries.

The thirteenth involved fitting a new cardiac catheter and her fourteenth involved a cardio echo which confirmed she had an irregular heart rhythm.

A month later she was admitted to Great Ormond Street Hospital for her fifteenth procedure, to have a pacemaker fitted.

Nicky said: ‘It is a dangerous operation for a child as young as Sarah was.

‘She was very badly bruised after this surgery and looked so frail.’

In September that year Sarah underwent her sixteenth surgery, to replace her mechanical mitral valve with an upside down aortic valve, which was larger and would continue working as she grew.

She recovered well, despite doctors’ concerns numerous scar tissue would restrict their access to her heart.

Sarah was finally well enough to go to mainstream school, where she did brilliantly to catch up on four years of work.

She started a normal life with her friends, meeting up after school and going shopping at weekends, although she was not allowed to do any sports.

It was not until she was 13 that Sarah needed her final and seventeenth surgery to replace her existing pacemaker with a larger biventricular one.

Nicky said: ‘It was a long operation and difficult, due to the blocked and narrow arteries. But it needed to be done, as the previous one wasn’t working properly.’

Sarah has been trouble-free for almost three years, although she undergoes six monthly checks at Great Ormond Street and recently has been referred for further tests at Kings College Hospital for a possible neurological problem.

The teenager said: ‘I still have to take warfarin every day to thin my blood so it can travel through my valves.

‘I have to be very careful not to cut myself as it can cause heavy bleeding. But other than that I feel great.’

The ambitious schoolgirl hopes to become a dietician because she remembers how much help she received after stomach surgery.

Sarah said: ‘I had my stomach stapled to stop the food coming up and flooding my lungs.

‘That meant I couldn’t eat much, so I was all small and skinny.

‘But the dietician gave me an eating plan and lots of high-fat milkshakes so now I look normal for my age.

‘That got me really interested in nutrition.’

Sarah also loves cooking and is taking her food technology GCSE.

‘My chocolate eclairs always go down pretty well,’ she added.

Suzie Hutchinson, chief executive of the charity Little Heart Matters, said: ‘Sarah is a reflection of the wonders of modern medicine.

‘The way new surgeries and techniques have emerged means many more children may be able to grow up and lead full and happy lives with this condition.

‘Every day is a challenge for Sarah, not only because of her ever-changing medical condition but her need to move towards an independent adult life.

‘She is the most wonderful role model.’

Nicky now runs a helpline for the charity and the family often hold fundraising events to help other youngsters.

‘I wanted to give something back and I hope Sarah’s story will give other parents some hope and encouragement,’ she said.

‘It is possible to defy the odds and pull through.’

Braveheart battler Nathan Garcia thrown a lifeline

Article from:

Fingers crossed for Monique and Nathan ... argghhh!!!!!

By Grant McArthur

November 26, 2008 12:01am

BRAVEHEART battler Nathan Garcia has been thrown a lifeline.

The French inventor of a spinal support rod that could enable Nathan to have a life-saving heart operation has offered to immediately fly him to Paris for the implant.

On Monday the Herald Sun revealed Royal Children's Hospital safety procedures had delayed surgery to implant the rod in Melbourne.

Nathan's mum, Monique Garcia, was now speaking to respiratory doctors in Melbourne to find out if Nathan, 6, could survive the journey.

The founder of Phenix Medical, Arnaud Soubeiran, met the Royal Children's director of cardiac surgery, Dr Christian Brizard, in Paris on Monday to again discuss Nathan's condition.

He has told Ms Garcia he would arrange surgery at Paris's St Vincent de Paul Hospital, where more than 40 rods have been implanted in other patients, if Nathan is well enough to travel.

"I will provide you with all the support I can," he wrote to Ms Garcia.

"This of course includes offering a dedicated Phenix M device to Nathan and offering you to stay in my flat in Paris if this option works.

"But there is no doubt that time is playing against us and that we must make quickly the right decision because we won't have a second chance."

The Pascoe Vale boy was born with only half a heart and scoliosis, a condition that has deformed his spine and made him too ill to survive the complex open-heart surgery needed to prevent his fragile heart stopping.

Ms Garcia has criticised the RCH's new technologies committee for not allowing the rod to be implanted in Nathan's back because it is not approved in Australia.

While the chances of the rod improving Nathan's condition enough for him to undergo the heart surgery were unknown, Ms Garcia said he would die without it so she was hoping to accept the French offer.

"They have opened up a position for Nathan, and have offered to house me and take care of us," she said.

"I feel this is something that could really happen for Nathan, and could get him into the treatment that he needs much quicker, so it is a chance we have to take.

"It is a risk to fly, but we cannot afford to wait and I have to do everything to protect my son."

But RCH chief of surgery Leo Donnan said Nathan was in a stable condition with no immediate danger. The hospital was acting in his best interests by fully evaluating the new device.

"The technology committee has looked at the rod . . . and there are still a few questions that need to be completed before we can say it is safe," he said.

"We have a child that has a very precarious condition that could potentially be life-threatening by intervening with surgery.

"We are going to make sure everything we do is 100 per cent safe to maximise the chance of this child having a good outcome. It is not about bureaucracy . . . it is purely about giving this child the best chance of surviving."

Royal Children's Hospital red tape denies dying boy Nathan Garcia a chance

By Grant McArthur  

This is a friends son in Australia .. who has the same heart condition as Cameron ...

- Herald Sun

November 24, 2008 02:52am

Killer bureaucracy ... Nathan Garcia, pictured with friend Miranda Lindsay, has been denied access to a new medical development that could save his life.

• Dying boy, 6, has half a heart
• Needs back surgery so heart can improve
• Hospital says it must evaluate procedure first

A SIX-year-old boy with only half a heart is dying as red tape prevents Melbourne's Royal Children's Hospital surgeons giving him an operation and a chance to save his life.
As well as hypoplastic left heart syndrome, Nathan Garcia suffers from scoliosis - a condition that has deformed his spine and now places so much pressure on his arteries and lungs he is unable to undergo life-saving surgery to re-rout his half a heart before it stops beating.

Royal Children's orthopaedic surgeons had planned to place a new type of metal rod in Nathan's back to ease his scoliosis, improve his heart and lung function, and hopefully make him healthy enough to undergo the heart surgery.

However, the hospital's New Technologies Committee has refused permission for the operation. It says processes have not yet allowed it to evaluate and approve the French-designed Phenix Rod for safe use, and instead Nathan has been placed in palliative care.

Nathan's distraught mother, Monique Garcia, said her son would be dead or too crippled for the operation before the red tape cleared, and was appealing for the decision to be reversed for a one-off operation.

"They say it might be OK to use in a few months, but I'm terrified he'll be dead in two months," Ms Garcia said.

"Normally I would accept the process of approval, and it is warranted, but it doesn't have a place in this situation - he is going to die anyway.

"We have a surgeon who is wanting and trying to save his patient's life, but on the other side we have red tape, and I don't think anything should get in between a doctor and the welfare of their patient. He will die if he does not have this operation - and soon."

Nathan has been supported in hospital by best friend Miranda Lindsay, who regularly visits him.

Royal Children's orthopaedic surgeon Dr Ian Torode and director of cardiac surgery Dr Christian Brizard met the Phenix Rod's inventor, Arnaud Soubeiran, in Paris last month to discuss Nathan's case.

Royal Children's spokeswoman Julie Webber said the committee was examining the use of the Phenix Rod and a decision about its suitability as a treatment for Nathan would be made in his best interests.

"The decision will be made around what is in the best interests of the child," she said.

Your Say

If the operation goes ahead and the child dies will the parets sue? The medical board are scared of this happening. Sad reality of life.

Posted by: Glenn of Melbourne 4:11pm today
Comment 29 of 29

"In the Best Interest of the Child" well I think that should be left up to the parents to make that dissection, not a board room who would be looking at another case number. I am an Australian and have been living outside of Australia for the past 11 years in China. Very sad to say but this is another perfect example of what I always ask, who is living in a communist country? Monique please stay srong never give up and people of Melbourne Victoria, get behind this young boys dream of living.

Posted by: Glenn Baldock 4:05pm today
Comment 28 of 29

Are there any other surgeons out there who'd like to have a go, slicing and dicing this terminally ill boy? Now is the perfect oppertunity to try any crazy new procedures you've got. Lets face it - the parents are desparate and will accept anything that you recommend, and the public don't mind if you use sick children for scientific experiments. Hell - they demand it! You'll get paid whether your idea works or not. What could go wrong?!? (Well, maybe the kid will die - but who cares - he was going to die anyway. If you fluke it, and help the kid, you will be more famous and richer! There is no risk! Surely this dying kid wouldn't mind using his last few breaths to inflate your wallet.) RIGHT EVERYONE?

Posted by: frightened of medical experiments 4:02pm today
Comment 27 of 29

If it was the parent refusing to have this operation, they would be criminally charged. If this poor little boy dies because he is denied this treatment, they should charge the people who denied this surgery to him. It seems like it is way to easy for them to hide behind their clipboards and take no responsibility for the devastation they are causing this poor family! Good Luck Nathan, hope you win mate!

Posted by: Michelle of null 3:46pm today
Comment 26 of 29

I agree with Samantha, comment 10. The point of this process is to promote patient safety not to differ operations. That is the point of government, accountability, leadership and process. If everyone came to the hospital with a print out from the net of some half baked procedure, you would have increased deaths, blown out waiting lists as well as more people suing the doctors because "they are in a position of trust to inform the patient of the right direction for their situation". It is sad that he may die and without any help he certainly would anyway, but hopefully he will survive and get a quality procedure done and then live a happy life. Stories like this, while depressing, may bring some attention to the fact that hospitals are also understaffed and underbudgeted and this could bring some positive results. But I wouldn't hold my breath on it.

Posted by: Paully of Brissy 3:43pm today
Comment 25 of 29

This beautiful child should be given the option of living. Red tape does not belong in this situation.

Posted by: Dion of Perth, WA 3:26pm today
Comment 24 of 29

Guy of Adelaide (comment 8), you are right to a certain extent about the people who get to put processes in place. My husband is a Senior Principal Civil Engineer working for Main Roads. He is faced every day with frustrating processes that hinder him from doing his job. Processes put into place by, as you say, clerical staff and high placed admin staff that do not have the required degree in Civil Engineering to come up with such processes. The Public Sector has highly qualified staff with years of experience whose every move is also met with red tape so please dont tar the whole system with the 'get rid of them' brush. They have to come up with these process to keep lay people of the general public happy when they want answers regarding road safety etc from the equally lay Politicians who have to say what the voters like to hear (not to mention in Brisbane the Public Sector bashing Courier Mail) All one big Political, Public Liability fearing farce really.

Posted by: corinne of Brisbane 3:12pm today
Comment 23 of 29

I simply cannot believe this! There is an option available that may give young Nathan a chance at life ... and he should be given it. How dare they condemn him to death.

Posted by: another heart mum of Newcastle 2:51pm today
Comment 22 of 29

the human life has no value anymore. god help us all

Posted by: marlene bortoli of central coast 2:46pm today
Comment 21 of 29

Just put the damn rod in already! ... jebus...

Posted by: David W of Brisbane 2:33pm today
Comment 20 of 29

There is some amzaing medical technology out there, not all of it is beneficial to every, or even any patient. Just because the French has approved it does not mean it will guarantee the boy a positive outcome. The medical board will respond in time I'm sure.

Posted by: Mr M of bne 1:15pm today
Comment 19 of 29

If the headline read, "Surgeons testing experimental surgery on terminally ill children" then how would you all feel? The New Technologies Committee is here to ensure the humane treatment of people so we don't treat them like lab rats, regardless of the parent's desires. Neither party can say for sure he'll be dead in two months and the doctors seem to be more informed in this case, "Royal Children's orthopaedic surgeon Dr Ian Torode and director of cardiac surgery Dr Christian Brizard met the Phenix Rod's inventor, Arnaud Soubeiran, in Paris last month to discuss Nathan's case."

Posted by: Nick 1:12pm today
Comment 18 of 29

God bless this little boy and his family and friends. If Nathan's doctors and surgeon are supporting this procedure and the family want it, then the hospital needs to back down and butt out. At times such as this decisions need to be made quickly. It is NOT in the best interests of the child to delay. Red tape has its place, but the time to act is NOW. May sanity prevail. Best wishes Nathan ... you are a little trooper. I am praying for you.

Posted by: Elizabeth of Queensland 1:10pm today
Comment 17 of 29

This is the unfortunate impact of the amount of medical litigation in our society. No-one will take a chance, the hospital must go through an exhaustive review and evaluation process because if things go wrong they would be looking at a multi million dollar law suit. This is the health system the public has demanded through their own actions. It's a shame some of the innocent victims will be children.

Posted by: Shane 12:54pm today
Comment 16 of 29

This is the sort of typical luddite, blinkered thinking that Keeps Australia in the technological dark ages. ""The decision will be made around what is in the best interests of the child," she said" Julie Webber, if this was your child you'd just about move heaven and earth to get anything done to help it. Best interests of the child my eye... Moreso the least letigious course of action of the hospital to avoid any damages claim. If the child is doomed without this procedure, then with the procedure, is hardly likely to make anything worse,.. god australia you make me sick. Land of the introverted and home of the technophobe.

Posted by: Steve K of Perth/Hong Kong 12:38pm today
Comment 15 of 29

This boy has nothing to lose, and so much to gain if this procedure is successful. The hospital should stop worrying about the 'wotif' it doesn't work, and start thinking abouth the 'wotif' it does work.

Posted by: V of Darwin 12:34pm today
Comment 14 of 29

Totally agree Samantha (comment 10). Even if the parents agree to sign away all their rights to litigation if anything should go wrong there are still countless ways to get around this and sue the hospital anyway. The hospital system has some serious shortcomings but in this sort of scenario they're stuffed either way.

Posted by: Damien 12:32pm today
Comment 13 of 29

If it was a family member of the committee, I am convinced that it would be rushed through. If there is a small chance this little boy may survive this surgery to endure a life-saving operation, shouldn't it be allowed? Shouldn't he at least be given a chance. The alternative is obviously much worse and cruel all-round. If its that risky and the hospital are concerned about litigation, couldn't the parents sign some kind of waiver, just so that their son has a chance at life?? So much for our educated idiots running the world; most have lost sight of the simple things!

Posted by: MumB 12:14pm today
Comment 12 of 29

I bet if it was their child it would be a different story, any mother/father would give life to save the life of their child, my heart goes out to the family and I give my strength to the little boy, keep fighting buddy.

Posted by: Karen of Adelaide 11:57am today
Comment 11 of 29

If the operation is proven overseas and the doctors in charge of the patient are convinced it is in the best interests of the patient, then cut the red tape and let this happen. However, don't let it become a precedent for any future desperate attemtps to prolong life without going through proper assessment procedures.

Posted by: Allan of Gold Coats 11:56am today
Comment 10 of 29

Doctors/hospitals are damned if they do and damned if they don't. On the one hand it may be unsafe to proceed with an operation that is not yet deemed safe and that they have no experience with and on the other the parents are saying that her child cannot wait 2 months while this procedure is evaluated. In this age of litigation - if this hospital went ahead with this unevaluated procedure and the child died the parents and their lawyers would be suing for millions for wrongful death. I am sure the hospital is doing what they can to keep this child alive and in as little pain as possible. He is lucky compared to millions of children in other countries who would not even have the chance of this type of care let alone the prospect of being 'saved'. Hospitals & doctors just cannot win or keep everyone happy... I am sure that they are doing this in the best interests of this child and at the moment and that his life is less at risk right now than if they proceed without more investigation of the risk. The way that the media portrays every article in the most negative and controversial light is getting very tedious.

Posted by: Samantha 11:56am today
Comment 9 of 29

What Julie Webber really means is "who is going to pay for this"?????? How about the media focus on her and the committee!!! and not just the committee...get the names of everyone on it and print them so we all know who is really responsible for what happens to Nathan. good luck mate!

Posted by: Robert of Brisbane 11:13am today
Comment 8 of 29

The saddest thing is the people who created the process are clerical staff who got promoted by means of brown nosing and backstabbing, have no real skill or clinical experiences but are just plain bureaucrats. We need to get rid of the state governments, they are useless and are a waste of money.

Posted by: guy of Adelaide 11:11am today
Comment 7 of 29

What a load of bollocks. Its in the child's best interest to ensure a life lived as long as possible which this rod will extend! Placing him in palliative care is a definete death sentence and is in no shape or form "in the child's best interest". As stated, the committee is just wants the child to die a painful death in palliative care, outside of their responsibilities, than risk anything negative happening with the rod. If they choose not to go through with it, I am going to forgo my annual $10k donation to the hospital. I donate my money to save children, not to let them die because of red tape. That is a principle I cannot forgive

Posted by: Paul 11:06am today
Comment 6 of 29

Surely if the parents are aware of the potential complications and agree for the procedure (however groundbreaking in Australia it is) to go ahead, the red tape should be cut. However I suppose this is what comes from having to pander to so many money grabbing, public liability squawking ignoramuses. All the payouts that have occured add another metre to the red tape. Great hey?

Posted by: Corinne of Brisbane 11:06am today
Comment 5 of 29

We need to petition to get action.

Posted by: Nicole of melbourne 10:32am today
Comment 4 of 29

Seems like an easy one to me. When is it ever in a patients best interests to die? The only flaw I could see is if the rod caused untold amounts of pain but thats only speculation. If the rod wont cause some other kind of debilitation in its own right I say go for it!

Posted by: da of Sydney 9:19am today
Comment 3 of 29

This is appalling. A childs life hangs in the balance. Stuff this red tape and get on with it. I pray he makes it and is allowed to have the operation. If it was one of their kids would the situation be different ????

Posted by: Nat 9:14am today
Comment 2 of 29

What a buggered up system

Posted by: Nathan of Hobart 9:11am today
Comment 1 of 29

Ronald McDonald House Fundraiser ...

A bit of background ..

E and K came up with an idea a few months back after H was diagnosed with Ewing's sarcoma to have a fundraiser for H's family ..

After a bit of pondering  they thought of how they could help the family out and then and after a discussion with B (H's mum) thought about all of the kids in the district who have had to go to Starship Hospital and came up with the idea instead to fundraise and for all the funds to go to Ronald McDonald House as in the past 6 yrs .. we have had at least 7 of our kids in the district at Starship for various medical conditions or emergencies ... and of course Cam was one of them .. and all of our families have had to stay there during their time in Auckland ..

Entry was by donation ..

So there was some music

.. some speeches .. (from J and K)

... a visit from Santa and a helper ..

 

and a Mystery Items Auction with a number of donated items .. (where most went for a min. of $120) ...

The next thing was a kind of FunRazor but with a Puke twist .. done with a shearing hand-piece by S.

About 15 people elected to have their heads shaved for the cause.

This was one of the organisers - K . .she raised $400

Next up was an especially cool sponsored shave....

W has had this beard for something like 15 yrs ..

His daughter was diagnosed with Ewing's sarcoma a couple of months back

.. and is still in the midst of treatment ..

.. and his one condition was that she was the one to do the job ..

... so she is the one shaving his head and beard off ..

The district raised $1,000 just for him alone to do this ...

Many of the others above also raised funds or were sponsored ..

Starting the beard ..

 

Before (not entirely keen ..lol) ..  After ..

Amazing what can happen after an idea over a few bevies one weekend .. is put in to fruition

.. and a rural district bands together to get it done huh ..

Will update at a later time the $$$ raised ...

Update: At the moment the total funds raised .. excl refreshment sales are over $5,000

!!!!!!!!!!!!!!!!!!! WOW !!!!!!!!!!!!!!!!!!!!!

The other stuff ... Cam ..

Still not dealing with it the best ..

Have eaten far too much rubbish food today ... which of course peeved me off ....

Feeling sorry for myself ..

Will be a better day tomorrow .. :-D

Cam almost didn't get on the bus to go to school this morning

.. not because he didn't want to go

.. but because I wanted to wrap him up in cotton wool .. and hug and hold him for the rest of the day ..

(He would have thought what on earth is going on here too .. lol)

So the rational and 'slap yourself together for goodness sake' Mum stood in and took over and said 'See you after School....'

.. and worried all day ..

.. and peeked in to the class as we went past for Playgroup at the school with Missy ..

.. and then told him off when he walked in covered in mud .. on to the carpet from playing outside in the puddles ..

.. because life goes on .. he knows no difference ..

.. and I can't not let him be the 5 year old kid he wants to be .. and needs to be ....

... because of my own fears and worries..

Argghhh! *slap*

Damn it all for knowing what we do.. as adults .. and as parents ..

Cam's echo ..

Cam's echo was cr*p ..

That is all I have to say about it

.. maybe until tomorrow ..

Hopefully I can cope with it a bit better then ..

Another day tomorrow ..

My day was going great .. time with my girl .. playing and looking at the gardenn.. you know .. spring stuff ..

..... until we went to Cam's appt for X-ray and ECG ..

.......... now I feel like sh*t ... his ECG is all over the place .. and I can see it's not good ..

.. it had irregular heart beats all over it .. spikes where they shouldn't be .. and all the curves are all over the place ...

I had a feeling it wasn't going to be good ..

He's turning blue a lot more .. having lots of "tantrums" that he has when he's not well..

I actually took him to the doctor today .. as I said to the doctor .. something isn't right .. but they can't see anythin physically wrong .. just that he looks run down!

..and of course his bloods are all out ..

Sigh ... I can't worry too much (well I can and I will) ... but will leave it for the cardiologist to sort out ...

Might ask to have a 24 Holter Monitor to be done ...so they can look to see what it is going on ...

Arrgghhh...

Deep breaths!!!!

it's just a bummer ...
I don't want him to have any more surgeries this early on in the piece ......
They were talking him having a pacemaker last time .. so you never know ......
But what it comes down to is .... if he needs it well he has to have it ...

Echo next Tuesday .. hopefully will be OK .. fingers crossed .. *she says with her breath held*

Ahh another day .. tomorrow ...

Might go for a walk instead of eating .. or I might just eat !

No I am going for a walk ..!

A wonderful lady

This was in the NZ Herald today:

Unsung heroes: Nana with a heart for 'special' heart children

5:00AM Thursday July 10, 2008
By Craig Borley

Marie Jujnovich has spent 17 years helping young cardiac patients and their families. Photo / Brett Phibbs

A young mum and dad, proud as punch of their new family, get the horrific news their child needs heart surgery.

If they live outside Auckland, the news is worse still, as the country's only specialised paediatric cardiac ward is at the Starship hospital.

Away from the support systems of family and friends, it can be a parent's most harrowing time. But it is a time "Nana" Marie Jujnovich tries to improve for the families by giving them her time and experience.

Her own grandchild was a victim of heart disease, and she can well remember the strain that placed on the family.

"And I said to my daughter as I left the hospital, 'The humility you learn from these little children, let's never forget it'.

"You see them going through so much and you realise how important it is to give them a lift along the way."

Mrs Jujnovich has been giving them a lift for 17 years now, and her work is essential, says Heart Children fundraising manager Iyanthi Wijayanayake.

"That emotional support that Marie gives, when a family needs her to put her arm around them and have a chat with them, it's just amazing.

"She's been absolutely awesome and absolutely valuable. Being a charity, we can't really afford to have a paid person up there doing what Marie's doing."

Mrs Jujnovich said her heart was constantly touched by the children she saw at the hospital, despite the seemingly morose environment.

"People will say to me, 'How can you sit with sick and dying children all day?' And I think, 'How can't I?' You can't walk away. There is an amazing part of these children - heart children are special children.

"So I choose to be available. It's just a way of life for me now. And I'm definitely not going to stop any time soon. I can't see that at all. While there is somebody who needs me, I'll be there."

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This story was found at: http://www.nzherald.co.nz/section/1/story.cfm?c_id=1&objectid=10520790

Copyright ©2007, APN Holdings NZ Limited

Movin' on up...

I'm trying to be good and get myself rolling on this blogging thing .. then I think of something that would be good to write down .. for me .. well maybe to share too .. but I digress .. then when I actually get to write it down .. it's gone ..

Soo ..

Here's my last week ... boring .. but good for me .. lol

So last week .. mmm .. nominally better .. I went out with friends for a coffee and brunch at the end of the week which was good .. well really good, we haven't got together for a while, we were going to with our dh's but it all turned pear shaped with kids getting sick, other things on etc, but anyhoo .. we had the coffee, food and talked the biso .. which was good for off -loading. One of them is going back teaching next term, which is not entirely what she really wants to do we think. She has a little 8-9 week old baby, and doesn't really want to go back, bub isn't taking the bottle, and we think that just one more term really would be a good idea, but relationships are hard, and her partner wants her to go back, and so she is .. sounds all macho and stuff but it isn't just the way things go.

So the rest of the week .. on Sunday we had the HC memorial service .. lovely, but freeezing, Sally introduced the service, Fleur read a poem, I read a poem, and we put flowers up on the altar, we then went back to the cafe for coffee to warm up and the kids had afternoon tea, and some goodies donated from local businesses .. Really nice. We then had a quick "look" around a couple of the old buildings, but it was near closing time, so didn't have too much of a good look around.







Monday back to school ... Tues school .. and so it continued .. me fighting with the kids to get them up .. well one of them .. and the other not wanting to get dressed .. rush out the door at 5 or 10 to 9 just in time to get to school either just as the bell went or after ... Each day M5 asked.. how many more sleeps 'til the holidays, I don't want to go to school .. in my mind I was saying the same thing !

Wednesday the playgroup went to Jack & Jill's and I talked to Amanda about Jenny Craig .. $450 to join and then $150 for food each week, but she has lost 10kg's already, and it doesn't seem like it was more than a couple of months .. phew .. so will look into that after the holidays....after I save up .. WW doesn't seem to do much for more .. too much temptation and if I can have the food and plan for the day all set for me I think I will be less liable to fail .. oh and the cost of course would deter me going off the rails ..wasting money an all that .. ummm yeh !

Thursday .. school interviews .. what have I got to say about that .. mmm well that's in a private post after this .. vent vent vent, but as my sister said at least it has been picked up, her children have learning issues, and the teacher are often quick to brush it off , and at least M5 has been offered a teachers aide and follow up ..

It's just so frustrating.. with helping him to learn, as it is like his brain hasn't clicked to it .. and you can see he is getting frustrated with it too ..

So next up ... Friday .. jeepers that came around quick .. and the Sat was calves .. 11 to feed wahoo .. kinda fun .. and a couple a really sucky motors .. lol .. especially no 204 .... So every day 4pm my job begins ...now if I could get Little Missy to like being down there .. well life would be a little bit easier ..