Sunday 6 July
Sometimes you have to ensure that you make your own memories – in fact in some ways, life is all about making as many positive memories as possible.
This week, we decided, in a slightly crazy way, to take all three kids to a wedding of one of J’s cousins in Crewe – and then drive home again on the same day, which meant leaving Crewe at 11pm and getting to bed at 2:30am (we hit a traffic jam on the M6 ‘cos I thought I knew better than Google, but that’s another story).
Well it was definitely worth it … and not just due to the strange sight, during the beautiful outdoor wedding ceremony, of cows from the next door field clambering onto one another, perhaps feeding off the innate romance of the day.
But the real reason was the way that Little S enjoyed herself so much – chatting with other 3 year old girls and telling us that they were ‘talking about dresses’!
And then dancing together at the end of the evening, along with her older sister T and of course my gorgeous wife J.
Dancing with your kids at a family wedding is, I think, one of life’s great joys, something to treasure, and Little S was certainly enjoying it.
She twirled, she toddled, she laughed, she asked to be carried …
Must do more dancing!
Wednesday 9 July
Memories and milestones often coincide – Little S took part in her first nursery sports day: a little relay race, a balance-a-rubber-ring-on-your-head race and a step-in-the-hoops-as-you-run race.
She was superb! I’m gutted that I wasn’t there in person but it seems as though you can make memories out of videos – I now almost feel like I saw it all first hand, recalling the massive smile on Little S’s face on completing her ‘balance’ race.
There was little or nothing to imply that Little S was taking part in any way ‘different’ to any of the other kids – even leading the exercises at one point (think she was doing lunges!).
It’s just wonderful that she continues to find ways to live life to the full – and that we can create long lasting glorious memories as a result.
Monday 14 July
This month’s visit to GOSH – sats were just about ok at 72%, possibly slightly lower than previous visits but possibly just low because Little S was a bit knackered from the past week.
School’s out for summer so we had older sis T with us, which was great when we needed someone to help distract Little S like when the nurse tried to put anaesthetic cream on her hand – she hates that, even though it doesn’t hurt – I guess because she kind of knows that it’s going to lead to an injection later on, for blood tests. So between T and Peppa Pig we managed – both on hand again for the actual injection.
Dr D was on good form – even though he had a gaggle of three female medical students in his office he still managed to pay a lot of attention to Little S and to us.
He was genuinely interested and pleased to see the sports day video (the wonder of mobile phones) and, later, played a bit of catch with T.
Based on some of her recent sats scores, and the fact that Little S is doing fairly well at the moment, Dr D suggested that he thinks it’s probably time to schedule a catheterization procedure to try and insert a stent into Little S’s reconstructed pulmonary artery to inflate and widen the conduit a little bit – the conduit is a small 6mm goretex tube that was inserted when Little S had surgery to connect the reconstructed artery to her heart – essentially it’s what she has instead of a fourth heart valve.
I think he said that it might be able to be inflated to around 7mm, which should improve the blood flow to her lungs and the amount of oxygenated blood flowing around her body and, consequently, her sats. Dr D said that the idea would be to do this without placing undue stress on her heart, either as a result of the procedure and accompanying general anaesthetic or as a result of the extra blood that her heart would need to be pumped around.
Dr D needs to chat this idea through with colleagues but we could be looking at something happening before the end of the year.
I also met with Dr B – a cardiologist at GOSH with particular experience in cardiac regenerative stem cell therapy.
We had a good chat – he implied that some success has been reported from people injecting stem cells into adults or kids hearts to try and improve heart function, but that the results were far from conclusive – studies have either not used randomization and placebo trials (so you can’t tell whether it’s definitely the stem cells that are causing the effect) or they’ve been performed on adults following heart attacks rather than kids with congenital heart defects (which means that they’ve not needed as big a biopsy to garner the stem cells because a heart attack leaves a localised scar on heart tissue whereas CHDs tend to affect larger parts of the heart – the left ventricle in Little S’s case) or they’ve taken cells from bone marrow rather than the heart itself which seems to have a weaker effect but perhaps is less risky.
Overall Dr B said that technically they could do something with Little S but the chance of it having much effect was pretty small and the risk of something bad happening as a result of the surgery was much higher.
And he hadn’t heard of Dr K (who I’d been trying to talk to in Maryland) but said we should try and get hold of their ‘protocol’ so that Dr B and Dr D could form more of an opinion about how likely is it to be effective.
So in summary, not right now – but in the future, who knows?
And in terms of memories? Well we took in a pizza afterwards that made the day seems a lot brighter for all of us.
Tuesday 15 July
Today we went to the Warner Bros Harry Potter Studio Tour in Leavesden – a genuine tourist attraction just a few miles from home!
Absolutely brilliant and great fun (although not cheap!) - it reminded me (because we got to see them!) of Albus Dumbledore’s memory viewing pensive and his intriguing collection of small, glass, ornate, memory storage bottles – each containing an incredible memory.
Even better than a mobile phone :)
