not an update just an outpouring

i just wanted to get this down (partly in a hope it’d get me blogging again!) Boo’s heart has me worrying. She’s slowing down (both her heart and her) and all the while the risks of inserting a pacemaker outweigh the benefits she’ll just keep getting more tired. theory is eventually she’ll just kind of veg on the sofa all day and then quality of life will become very important and benefits outweigh risks. now, i don’t particularly want to subject her to surgery before she really needs it (and the earlier they do it the more times they will as she’ll need a bigger one later etc) but what decides quality of life. how do you define/decide when it’s not fair on a 3 year old? she loves tumble tots, tumble tots is at 3.15 in the afternoon on a day when she now attends playgroup for 2 1/2 hours. when i say she loves tumble tots what i mean is that up until a few weeks ago she absolutely adored tumble tots, now she really wants to go but doesn’t enjoy it. she’s too tired, she cries quite a bit and only joins in a bit. so i think we’ll stop it soon. one day a week she does kindermusik. it’s a 45minute session where she plays some musical instruments, listens to some stories, moves around the room to music – not high intensity stuff. again, she enjoyed it, then she enjoyed it less. again, it’s an afternoon activity (don’t seem to be many morning activities for 3 yr olds, i think this might be because they’re all expected to be in nursery 5 mornings a week a la free nursery vouchers…) previously we did things in the morning of this particular day. we would do craft, we would go for a walk, go to a local indoor playcentre…. now we don’t. if she is going to be able to do kindermusik we have to opt to sit at home and read and watch telly in the morning in order to conserve energy. we did that this week and she enjoyed herself again, even got quite enthusiastic about dancing round the room. after KM we had to take a DVD back to the library so i parked about 5 minutes walk out of town. we walked in and then i got real tears about how tired she was and please could she get in the pushchair. we finished what we needed to do and she promptly fell asleep in the pushchair. she slept for 2 and half hours.

i don’t want surgery before it’s safe or sensible to do so. i also don’t see how i can cope with keeping her (and me, and Yogi too for that matter) sane with such a low level of activity, which of course is bound to get even lower as we go along. Tom suggested she not go to playgroup on a Thursday, but again this is something she really enjoys/enjoyed. she only goes 2 mornings a week. and they only do two specific days for 3 yr olds.

i suppose on a positive my health visitor (who i think may be more than a little shit otherwise) has put us forward for help via homestart, which is a volunteer thing where someone comes out and gives you a hand. i think this might help as it’s exhausting keeping both girls (and me) entertained and happy while trying not to do too much…. she’s also put a proposal forward for Boo to have a Play Development Worker come see her, someone who would do things with her that are mentally stimulating but not physically exhausting (or that’s how she described it – if anyone knows different and it’s just an excuse for busybody interfering with no real benefit please do let me know!).

am off now, bed beckons living life here at the moment is exhausting

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