The Journey continues with Cameron Craig's (and Michael and Abbie's) Heart and Health: 4th Birthday Preparations

Links to the beginning of the journey .. and info on his siblings heart conditions

Sometimes it is easy to “forget” that Cam has a serious heart condition and obviously someone forgot to tell him as he has more energy than many of us put together & such a zest for life … I remember seeing somewhere a slogan -“ Half a heart – not half a life” and this is certainly true for Cameron.

We hope you enjoy reading his story and that it will give you some hope with the obstacles you may face …

What is Hypoplastic Left Heart Syndrome (HLHS)?

Hypoplastic Left Heart Syndrome (HLHS) is a Congenital Heart Defect where the left side of the heart has failed to develop properly. There are varying degrees of malformation in the Hypoplastic Left Heart. The left ventricle is usually very small or non-existent. The aortic valve may be narrowed or closed and the aorta itself may also be very small. The left atrium is sometimes small and the mitral valve between the left atrium and left ventricle can also be narrowed or closed. These defects put extra work on the right side of the heart, so chambers and blood vessels on this side may be enlarged or stretched larger than normal.

To see the start of Cam's (and our) journey with his heart please
follow this link ...

Cameron's Hearts of Hope web-pages
Some of the photos and story you may find graphic, just to let you know.

Cameron’s twin brother Michael

Michael was also born with a congenital heart defect (CHD) called Pulmonary Stenosis. Up until the age of 2 Michael was monitored 6 monthly by echos and Paediatric visits and then at the age of 3 he was discharged as the Stenosis had corrected to an acceptable level so that it was classified as mild.

What is Pulmonary Stenosis (PS)?

This is where the Pulmonary Valve is thickened and narrowed leading to the development of abnormally high pressure in the right ventricle. The right ventricular wall becomes thickened ("Hypertrophied"). Stenosis (narrowing) of the pulmonary valve restricts flow into the pulmonary arteries. This leads to the presence of a heart "murmur". Often the narrowing is mild and does not put significant strain on the heart

Cameron’s sister Abbie

In August 2006 Abbie was given an echo to check out her heart "as a precaution" due to the severity of Cameron's heart condition & Michael's condition. Unfortunately we were given the news that Abbie has a congenital heart defect (CHD) called Aortic Stenosis. At that stage it was classified as a mild case at this stage caused by thickened leaves of the valve but because of the nature of aortic valves and she had to have frequent echos to ensure that it doesn't get worse, and just stays the same.

Unfortunately with the last echo in 2009 the Stenosis had worsened and has become mild-moderate and she will be reviewed again before she goes to school to decide whether she will need the corrective surgery on the valve. It seems that like Cam that her valve is bicuspid (the valves should have 3 leaves but both Cam and Abbie have only 2).

Aortic Stenosis

The Aortic Valve is thickened and narrowed leading to the development of abnormally high pressure in the left ventricle. The left ventricular wall becomes thickened ("Hypertrophied").

Stenosis (narrowing) of the aortic valve restricts flow into the aorta. This leads to the presence of a heart "murmur". Often the narrowing is mild and does not put significant strain on the heart.

However the narrowing frequently worsens with growth. If the obstruction is severe, symptoms may develop, or the heart may show evidence of "strain". The valve may require treatment to open it up. This may be surgical or with the use of a "balloon catheter" procedure.

SELECTIVE MUTISM

Abbie was diagnosed with Selective Mutism in March 2011 .. following 2 years of kindergarten where she never uttered a word .. towards her going to school she was referred to Special Education and support is now given to her at school.

What is selective mutism?
Selective mutism is a severe anxiety disorder that 7 in 1000 children suffer from (the same prevalence as autism spectrum disorder). People with selective mutism have social or other anxiety so extreme that they are physically unable to speak or otherwise communicate in certain situations, usually school and other social situations, despite being perfectly able to speak and displaying normal social behavior in others, usually home and sometimes a trusted friend's house. The "talk" and "non-talk" zones are different for every sufferer -- for instance, some may speak to friends at school but not answer questions -- and some find it easy to communicate nonverbally or even whisper in no-talk situations while others are all but paralyzed. Some children grow out of their anxiety, while others begin to speak but develop social phobia and still others enter adulthood unable to speak to most people.

"Selective mutism" is far better than the former name, "elective mutism," but it unintentionally perpetuates two misconceptions: that the child can "select" which situations to speak in and that the disorder centers around mutism. In fact, people with this disorder have no control over when they can or cannot communicate (and very much wish they did), and mutism is only the most visible symptom. Most, though not all, selectively mute people have trouble nodding, pointing, smiling, writing, looking somebody in the eye, or using various other methods of communication when they are nervous. Many therapists and parents fail to realize that these anxieties must be overcome before the sufferer can even consider whispering, let alone speaking. Furthermore, "selective mutism" makes no mention of the anxiety that causes the problem, leading to confusion about treatment methods.

This disorder is not terribly rare, yet most child psychologists and speech therapists have never heard of it, do not understand what it is, or have no idea how to treat it. Some children with selective mutism are incorrectly diagnosed with autism or mental retardation. The majority of them are punished for their failure to speak, since their parents and teachers assume that they are able to do it in all situations and that they are simply being stubborn. This makes the child far more anxious about situations in which they will not be able to speak and lowers their self-esteem as it is constantly being pointed out that they are unable to do something that "should" be easy for them. Many children with selective mutism grow up to adults with multiple severe anxiety disorders, depression, eating disorders, and/or substance abuse. However, selective mutism can be cured with cognitive-behavioral and/or speech therapy, medication in some cases, and understanding and support from family, friends, and school officials. Children who had the benefit of early intervention can grow up up to be confident adults.

Saturday, May 5, 2007

4th Birthday Preparations

16th April

Slowly but surely getting things organised for the boys birthday ..

We're having it a Lollipops this year, on the Sunday before their birthday - phew .. Then maybe something small like afternoon tea for the rellies on the day or the day after ...

Just sorting out the cakes .. gotta go organise the "cake" and getting together the pastes and food colouring - just have to hunt down a "piping" thingy for the web features on spiderman ..

The boys have invited:
Trint, Harry, Bella, Tylah, Portia, Callum, Logan, Sophie, Ethan and Kaleb... and a few dozen more if they could have ...

Here are some photos of stuff done so far ...

The Invitation

Template for Cam's cake

Template for Michael's cake

Will post photos once have got them done ..

19th April

Cake is ordered .. and I went and checked out the sizing so the two images fit. Brought a few bits and pieces for the "loot" bags and just sorting out what is now to go in to the "loot" bags now ..

Brought a "piping" thingy .. now just have to make sure the food colouring i've got a true colours .. might go to the cake decorating shop in NP tomorrow to get red & black paste rather than food colourings.

22nd April

Well worked on the cakes yesterday as Chris took the boys for most of the day .. started at 10.30am once Missy was in bed ... did Spiderman first .. finished that at 1.30pm ..

A grumpy looking Spiderman

then started Batman while the kids were outside playing at about 2 - 3pm .. and finished at 5pm ...

Batman

Don't think they turned out too bad ...

Party today .. will post photos later ...

The boys are sooooo excited ! Been counting down "how many sleeps to go - each night"

22nd April ....
Still to be completed ....

Photos of the party

Ready to go to the party

Getting ready to blow out the candles ...

Kings for the day ...

Unwrapping the presents ...

and just a few of the amazing gifts they received !

24th April
To be completed

25th April
Mum and Dad came down for tea last night & the boys were SOOOOOO excited - phew .. they gave Cam a Batman Plate, Cup and Pudding Plate set .. and Michael the same but with Spiderman on it ...

We are action hero toys full on here - lol

They love their Piano keyboards the best tho' - argghhh .. budding musicians - NOT! They have microphones too .. so we have some pretty way out songs going on ..

Here are some pictures of the cakes ..