Speed bumps


Albie is growing into the finest of young boys. He is sharp and curious and funny. He says all sorts of wonderful things. I wish you could all spend some time with him.

About a month ago, we were in Albie’s bedroom, I was sorting out clothes and the boys were playing with their toys. A super ordinary morning. Albie, all of a sudden, turned deathly white and froze stock still. He spoke quietly and gingerly, clearly trying not to move, “Mummy…….my heart is beating really fast.”

I rushed to him and put my hand on his chest. His heart was slamming out of his skin, as hard and fast as you can possibly imagine, and then,  just as quick as the panic rose in me, it was gone.

He has had six more of these arrhythmia that we know of since. He says it feels like dinosaurs.

We took a pediatrician appointment. She said, that arrhythmias can be nothing but that with his history it is possible some pacing nerves could have been damaged. It does appear to be electrical, as the episodes are completely unrelated to exercise and just happen randomly.

He had a Holter Monitor fitted on Thursday. That’s a 24 hour reveal device to record his ECG rhythms. Albie reckoned he looked a bit like a robot. He was amazing at not touching the wires and pads, even when they got itchy.


The cardiologist will make a plan once the tape has been analysed. It is Sunday here as I write and we’ve not heard anything from anyone yet, so I am taking that as good news.

Hopefully it is nothing. He might be growing and he might have these arythmias for a while and then they may disappear. Or they might get worse and they might need medicating with beta blockers. Or, he might need a pacemaker. So we are in this very wide space at the moment. Might be nothing – or could be the start of something pretty major.

So, in the meantime whilst they get to the bottom of it, we’ve got some instructions. If he has an episode, we are to time it and if it lasts for more than three minutes, we call an ambulance. At the moment they only last for around 30 seconds which means that the heart is bumping itself back out of the fast rhythm to it’s normal pace pretty easily. But if it didn’t do that, than it’s likely he will have a cardiac arrest.

Beyond. Beyond. Beyond words on that one.

I asked if we should be limiting him in any way and they said not to. We are just trying our darndest to just let it be. If you’ve got any words of wisdom on how best to be chilled out about all of this, please pass them on to us.

And then, in other rather bumpy news, we took Albie for an eye test. I’d suspected for a little while that his eyes might be weak as he edges very close to things to see them properly. Yeah. Well – he has 6/60 vision in his left eye and 6/20 in the right. I didn’t really know what those numbers meant but basically 6/60 is the worse of the two and means that he can see at 6 metres what a normal sighted person can see at 60 metres. It’s at the outer limit of certified blind. I am astounded, and embarrassed, that it took us so long to pick up on it. We’ve been referred to a Childrens’ Eye Clinic to check his field of vision.

On the up side, he will DEFINITELY be getting a few pairs of spectacles and I think kids in specs are just about the cutest things ever. And now that we know how blind he is, we are also really excited to show him what the world REALLY looks like.

So yeah, all a bit bumpity bump over here at the moment. But despite these wobbles, we keep on thinking how far we have come and only feel gratitude. This has been compounded for us over the past few weeks, as we have followed Joe, one of Albie’s treasured heart buddies in New Zealand, through his latest heart operation and recovery. It got rough and complicated for him –  just like it did with Albie. We felt such a great helplessness, as they sat vigil with their boy through the toughest of times.  Joe went home today. His parents and loved ones, will undoubtedly be changed. These heart boys – they stretch our spirits in ways we could never imagine.

And it makes these speed wobbles that we have now with Albie seem pretty darn small.

In other news from our front, I am pleased to announce that Fred now has the Cutest Hat in the World.  Grandma bought it for him at the local Craft Fair and it really is quite the treat. Just in time for Easter too.


So on that note, Hoppy Easter everyone. Be wonderful for each other xxx