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Yes he does have a lovely personality…

IMG_1213One of the things on my to do list is to find a way to be able to settle on a few phrases to quickly explain what is going on with Littlest – I either brush things off with ‘oh he has a bit of a thing with his leg’ or jump into ‘he has a congenital malformation of the entire lower left quadrant of his body which is going to impact him for the rest of his life’

Neither feels entirely right

I’ve also need to work on some responses to the well meaning things that people say – responses that don’t make either of us feel worse

People often say ‘hope it gets better soon’ which is tricky because the real response is that it won’t, it only gets worse from here on… although hopefully in time we will get better at managing how we cope with the clots he gets, the pain he has and helping him get more mobile

We don’t know exactly what is under skin, at some point he will have an MRI and we’ll know more.  For the moment he has large patches of blue birthmarks running around his leg from the base of his spine to his toes – they are like varicose veins.  If he bumps himself instead of bruises he gets clot; some are big, some are little; some go away easily, some get hot and need help to be persuaded to go away.  We manage them with hot baths, pain medicine and blood thinning cream

He’s 16 months now and not walking – he has started to try and cruise, using his arms to take most of his weight and refusing to bend his left knee – if I’ve heard one anecdote about other late walkers doing fine when they finally started walking, I’ve heard a hundred – the only trouble is that all of those late walkers had perfectly functioning legs and Littlest has an ankle that is weak (he’s sporting a smart pair of boots to try and give it a little support to help him with standing), and that gets sore and a knee that also appears to be uncomfortable for him.  The orthopaedic surgeon was lovely (if you ignore trying to get him to crawl on cold lino) but the current euphemism is that he will have an ‘asymmetric gait’ when he does walk –  I think that’s code for a limp

He is crawling – he has even started in the last couple of weeks to get up onto all fours – trouble is that this means more impact and more clots on his knee and on bad days he defaults back to a commando style crawl holding his left leg out to the side and with his arms and right leg doing all the work

He wants to move, he wants to run around after the girls and join in with others

We are going to have to get rid of the trampoline at some point, the doctors are adamant that he can never trampoline and never go on a bouncy castle – it will cause too much damage – how do you go about explaining that sort of thing to an active little boy?  How do you exclude him from birthday parties and explain without appearing to be That Parent?

I also struggle slightly that so much at this age is linked to the ability to walk – this age are called toddlers but what do you call a toddler that can’t toddle?  He’s stuck in the baby room at nursery because he isn’t mobile enough to join his peers that moved up on their 1st birthday, in developmental terms about 90% of what he can do starts with the assumption that he can stand up on his own… he can’t

And yes, people do say that he has a lovely personality which you know, he does sometimes but he’s a little boy and quite often he doesn’t and even so it doesn’t really make up for the pain, the lack of mobility and all of that – quite often at night he doesn’t have a lovely personality, he is sore, he can’t settle because he can’t find a position to sleep in that doesn’t put pressure on a clot and he doesn’t understand

This is journey for us – I just need to find the right words to signpost along the way

The background & why I stopped blogging – part 2


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How to make paper fortune cookies


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We decided to make paper fortune cookies – you can download the […]

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