Xmas poem


On Xmas day, we will not pray, but to all, we definitely will say
“MERRY XMAS, now when can we play?”

If it snows, we won’t doze

If it doesn’t snow, we’ll say “oh, no!”

But whatever the weather, we’ll have fun together

With Grandpop and Rose

And all of those

Who make us smile

All the while

Because they are our family! 
By Isla Murray 


Heart Break 

So much has happened here lately, and I seem to have curled into a little hedgehog about it.

Our biggest news is that Lucas’ heart is struggling as he has grown, so we are looking at more open heart surgery in the next few months. Even though we knew it was coming at some point in his teens, we were reassured by his last meeting, so to get a call at 8pm one evening saying the MRI has suggested his right side of his heart is now working so hard it’s twice the size of the left was a real punch in the stomach. 

Here’s info about his condition: 

He has a congenital heart defect called Tetralogy of Fallot, which was operated on when he was 5 months old.

Normal heart:      

Lucas’ Heart:


Now, his pulmonary valve is leaking and needs replacing. Due to his previous surgery they can’t attempt to operate through the groin, so  it will be another ‘chest-open’ job. His Septo Optic Dysplasia puts him in an incredibly high Rick category! 

Last time:




So to say we’re scared is an understatement.

This info is from the British Heart Foundation stating what will happen this time:

“What will happen during a heart valve repair or replacement?

In most valve operations, your surgeon will:

-reach your heart by making an incision down the middle of your breastbone
-use a heart-lung machine to circulate blood around your body during the operation

-open up your heart to reach the affected valve, and

-perform the repair or replacement.

How long will it take me to recover?

If all goes well, you will be helped to sit out of bed the day after the procedure. You can expect some discomfort after your operation and you will be given pain relief medication. Your pain level will be monitored to make sure you are as comfortable as possible. Many people return home within about a week. On average, it takes between 2-3 months to fully recover, but this can vary greatly as it depends on your individual condition.”

Added to this is the fact our lives keep on turning with shit stuff- my chronic illnesses, Islas fight for an ASD diagnosis, Iain trying to keep us all together, life is frankly a bit much atm, hence lack of posts. 
Love Sarah xx