Before I start on what may turn out to be a woe is me and my life and why does all this shit keep happening post, although I’ll try my best not to, I need to remind myself that if nearly 2 years ago, when I was with it enough to realise I was actually living a nightmare, instead of saying to us: ‘We can’t guarantee he’ll make it and if he does we can’t guarantee what brain function he’ll have,’ they said ‘It’ll be like all this never happened, his progress will be fine, he’ll keep you on your toes but he’s going to be on the tiny side’ I’d have snapped their arm right off there and then!
Sam has a HIE diagnosis, he was born with no heartbeat (9 mins to restart) and lack of oxygen (20 mins in total) this caused damage to his brain but thanks to the fantastic treatment he received almost immediately (72 hours hypothermia therapy) his brain was able to, well, re route around the damage. If you met him now you would have no idea because the boy is as bright as a button!
Because of his diagnosis and since he was discharged from hospital he has had regular check ups with a paediatric consultant. Check ups have been every 4 to 6 months to coincide with developmental milestones, which is basically what they check for (to make sure the brain damage isn’t effecting anything).
Today was supposed to be the 2nd to last appointment. I was hoping that because he is clearly hitting all milestones for his age, there or there about and that his gross and fine motor skills seem to be in line, that they would say that at around his 2nd birthday, they would be able to discharge him from their care.
Well, as you all know by now, my/our life doesn’t work like that does it!
His progress is fine and the consultant is happy with how he is doing with everything in relation to development but, there’s always a but with us isn’t there, he’s too short!
Now, we already knew he was tiny, he still fits perfectly in 9-12 months clothes, he’ll be 2 in 3 months and his feet are the same size his sisters were at 9 months old. We joke that there’s been some divine intervention, he’s been kept so small to help me cart round a baby sized 2-year-old whilst Chris is undergoing treatment and so he still fits perfectly on your knee for cuddles to make you feel better.
Today we were told that actually his height is quite unusual. He is growing, and following his own little line on the charts they use it’s just the line isn’t on the chart for a nearly 2-year-old.
This wouldn’t be a problem if he’d been small at birth but even with everything that went on he was born at a ‘normal’ length for full gestation. So at some point he’s had a period where he hasn’t grown, or he’s not growing at a now ‘normal’ rate.
So what we were expecting to be a quick tick box exercise appointment turned out to be a full day waiting for blood to be taken to be tested for all sorts of things that can affect growth, he is super brave and didn’t even flinch, and for an X Ray so they can check his bone age!
Of course it still could be that genetically on the small size, I mean it’s not like me or Chris are above average height, we only found out when Christies did his height and weight that Chris had been stealing an inch most of his adult life by telling everyone he’s 5ft 9 when in fact he’s 5ft 8. These tests will hopefully rule out or find anything nasty that could be underlying so we can deal with it.
This of course means he won’t be signed off at 2, looks like there will be plenty more check up appointments to observe his height and growth. I was disappointed today, it just seems like another thing on top of everything else (I got to here without being woe is me, be impressed) but at least they’re looking into it now rather than waiting ’til he’s 4 or 5 and still the size of an 18 month old and I struggle to get referred to anyone for investigation.
There is a silver lining to every cloud after all.
Now we just have to wait and see.
A simple life is overrated anyway isn’t it!