Friday, 24 June 2011


Short experimental post, partly to see whether my feed is updating or not.

And also, to say that I have MISSED having a proper blogroll - just being able to click down my list and see whether people have updated has suddenly become fun again. Blogger has moved on quite a lot in the time I've not been focussed on blogging - I was with Blogrolling but it all become complicated and slow and tedious, so I got rid of it completely and didn't have any head space to sort out a manual list.

But now! Blogger will do it for me! Widgets! Gadgets! Yay!

Monday, 20 June 2011

the bends

Nenna had her physio assessment today.

She has very flexible joints in her hips, her knees, her ankles, her wrists and hands. This means that she is inclined to sit in the evil 'W' shape, which tends to bend the tibia, move the musculature of the lower leg round to the side and twist the foot. It is probably the reason she is in-toeing. We have to start a campaign to discourage her from 'bad sitting' and encourage 'good sitting'. On the way home, we bought some very cool purple boots with flowers on the strap that come up well over her ankle to give her support.

Her general muscle tone is very poor - she finds sitting up from lying down very difficult, for example.

She has poorly developed 'saving reflexes' - ie, she doesn't put her hands down either to the side (at all) or the front (a tiny bit) when she tips that way. She *does* compensate for tilting - we sat her on one of those big ball thingies and the physio held her hips steady on it whilst tilting it to and fro - she compensated for the movement by straightening her body, ie, keeping herself vertical to the floor. But she didn't put her hands out when she got close to the floor, as one apparently naturally should do.

She could not move her hands forward when she was lying across the ball, with her hands on the floor - because of poor muscle tone in her shoulders. She was compensating by trying to use her hips, but obviously that didn't work all that well.

We are being assigned a physiotherapist who will probably come out to her here at home. We'll also be able to do stuff with her ourselves - I am already sharking for an exercise ball on freecycle. Her swimming is also good for her. The physio said that she seemed like a good candidate for MAISEY, which stands for 'Multi-agency Identification and Support in the Early Years' and is about getting children what they need in their learning setting for their support and development and helping with the transition between nursery/school. She is going to send me an extra copy of her letter to let nursery have. Fab Nursery are already organising for a Learning Support worker to come out and meet Nenna and see what she can advise them to do to help her.

There was also, by happy chance, a Registrar from the Paediatric team at the hospital visiting the physio team today. She said that when we go back to see the consultant in September, they will look at the reports from the ENT people, the Physio team and the Speech and Language team (the physio is going to give them a poke, as we haven't had an appointment from them yet) and then they will know more about what is going on. Blood tests will naturally fall out of that, by the sound of it.

B and I are very tired - not least because we did child shoes and a male-family-members barber trip afterwards - but I think that we both feel satisfied that our observations about her development are valid and that there are definite issues.

Nenna liked the dolls' tea-service at the hospital.

Friday, 17 June 2011


Actually, it does look quite nice, doesn't it? As Good Twin commented - soothing. Soothing is good.

Tea anyone?

Wednesday, 15 June 2011

and in other news ...

Something arcane and bizarre seems to have happened so facebook notes and scribefire are both barfing on blogger and feedburner. In attempting to fix this, I appear to have let myself in for a full template rebuild.

I am less upset by this than I thought I might be.

That is all.


Do you ever feel that you are just about to grasp whatever it is that you have been chasing for so long? That finally you are nearly there; you can see it and for the first time, you are steadily catching up with it? That IT (whatever IT is) might, finally, be achievable?

The last few weeks have been incredibly stressful, on and off. Coming after what B and I now call 'The Year Of Hell' as shorthand between us - 2008/9 - the year we had a new baby; I had post-natal depression; my father died; we had a second baby; two good friends dropped dead in their early forties; we went bankrupt and lost our business and our house three weeks before the second baby was born; B's parents went mad and our relationship with them bottomed out; the new baby was born with pneumonia and then stopped breathing at eight weeks old when she caught bronchiolitis and was kept breathing by my mother, alone in the house with her, in the half hour it took an ambulance to arrive; I had post-natal depression again; we had relationship difficulties; and finally we moved once more, back to Somerset - pauses to draw breath - things have been very tough - our resilience is very low.

Add to that my propensity to take on too much [glares round malevolently at anyone who might comment], I have felt for a long time that I have been grasping for a clarity and peace that has been permanently out of reach.

A month ago, just after we discovered Nenna's further difficulties, I cracked and confessed to B that I could no long cope with him being away for longer than three or four days at a time. I simply can't keep the routine going - chronic fatigue, depression, whatever the reason, I simply run out of puff after about four days and it takes me a fortnight to recover. B recognised that this was true, although he was unhappy about the reality. We have been relying a great deal on Ma and Sister Natalie to take up the slack for us and it's just not fair to them.

Two weeks ago, B went to the doctor and was diagnosed with depression. Unsurprisingly, given the circumstances. The wait for counselling around here is six months - we have found somewhere that offers means-tested private sessions, though, which is good.

We are both exhausted. Really, truly exhausted - emotionally, mentally, physically.

But, I think, this might be a good thing. I literally have no energy for anything other than marking time. Focusing on B and the children and having enough income to keep us bobbing along.

I have pared what I need to do down to the ground. I have cut my social commitments. I have made some very hard decisions about people I can and cannot have in my life. It has been horrible.


I feel better. I feel calmer. I feel as if I have a clarity of thought and purpose that I haven't had for years - perhaps ever. I finally seem to have time. Time to spend with the children - Leo and I spent twenty minutes in the Co-Op this morning, whilst he decided what sweets to spend his fifty pence on. Nenna and I spent half an hour sorting out her magnetic letters this afternoon. I have had time to read. I have had time and energy to keep the kitchen clean. I have had time to cook properly.

I am forty-one and I finally, FINALLY feel as if I might be getting to grips with the life that I want to live.

Thursday, 2 June 2011

doctor zhivago

The Health Visitor came to see us earlier this week. She confirmed that Nenna's speech development is lagging and her co-ordination and mobility is, too. She set out what is a likely train of events:

1. Speech therapy and Occupational therapy
2. A Paediatric appointment in late September (already booked) which will involve more muscle tests and blood tests for genetic problems. If these are negative, which is likely, we move on brain-stuff. A CAT scan seems unlikely to be helpful at this stage as any damage would be too minor to really *mean* anything - I am unclear about this, but I can see the logic of treating her with ST and OT and hoping the plasticity of the brain rewires itself around any problem. This is unlikely to be moved any earlier unless B or I really flip out, as her condition is not life-threatening.
3. If at age three, she still needs more supervision than a child of the same age should need, we will be able to claim more tax credits and possibly disability living allowance for her. This will help us as we were planning to change both children from their (FANTASTIC) nursery twelve miles away to a local pre-school this term. Leo has gone and is thriving after a few initial issues; but it is too rumbustious for Nenna given her mobility issues. And the petrol costs are slaying us. And, did I mention it's FANTASTIC-NESS?
4. Nursery will also be able to claim extra funding to help her development.

And so we go on. Today she had her follow-up ENT appointment. There is definitely a hearing issue - almost definitely glue ear. The ear drum does not wobble as it should, which is usually caused by fluid build-up behind it. There is hearing impairment at the lower frequencies, which means that she is having trouble hearing rounded sounds - a lot of vowels for example.

Glue ear usually solves itself; but given the other issues, they have put us on the list and she should have Grommits fitted in about eight weeks. We will then know whether the balance issues are solely down to that or whether there are other issues making her fall - given the tendency to not put her hands out to break her fall, this seems likely, but fluid in the inner ear can't be helping. In addition, whilst she is under general anaesthetic, they will be able to do a very in-depth hearing test that monitors the brain's response to sound, using electrode-thingies stuck to her head.

She has lost weight since her last paediatric appointment in February. This may be because she is moving around more, as the friend I went to visit afterwards for cake-and-whinge pointed out. Her feet haven't gone up a size since early January, though.

The Occupational Therapy letter was here when I got home - we are on the waiting list to go on the waiting list. Ditto Speech Therapy, although that letter came a couple of weeks ago. There is a twenty week *actual* waiting list for that, though.

We both feel fairly battered. I think 'in crisis' sort of sums up our family situation. B likened us to a pair of huskies pulling a sled, last night. The children and all our emotional baggage and stuff we have to deal with on a day-to-day basis are in the sled. We are taking turns pulling it. The one pulling it pulls until they can't go on any longer and then they stop and we swap places in the sled. Each time we take a turn, the time we can pull for gets shorter. I was in the sled a couple of weeks ago. B is in the sled at the moment, pretty much lying down there in the back under some nice, soothing wet newspaper, with his pants on his head. I am pulling; but I'm a sprinter and he's the slow-and-steady type. It's my turn, but I'm really scared in case he won't ever be able to get out of the sled. Or, if I end up having to get in it and there's no room.

I'm taking the sled analogy a bit far, now, but you get my meaning.

For today, that is all.