Friday, 30 December 2011
Wednesday, 21 December 2011
Physiotherapist appointment for Nenna today*.
Putting aside the fact that I got us there at ten and the appointment wasn't until one, so Nenna, Leo and I went to the playground and then for fish and chips and Leo broke the cruet and the man in the fish shop was very nice and wouldn't let me pay for it, this is what happened **.
1. Physio confirmed our feeling that her balance is worse.
2. We should not push her to exercise too much as she is so thin that it will be exhausting for her. It is enough of a challenge for her to walk across the room unaided without falling. (She is constantly asking to be picked up around the house, now - lack of confidence or exhaustion).
3. The waking three or four times a night and screaming for between thirty minutes and an hour might be caused by sleep apnea. Physio is going to refer.
4. Coeliac disease *might* be the cause of both the lack of weight gain, the lack of muscle and the balance. She is going to ask whether the dietician tested for it.
5. She is going to suggest a multidisciplinary meeting to exchange information and discuss the way forward, in the new year.
6. In her opinion, Nenna does not present with the symptoms of Cerebral Palsy.
7. Lots of children do not get a diagnosis or prognosis with these kind of symptoms. Ever.
8. She is going to ask for an MRI scan (which will require another general anaesthetic) to see whether there is anything wrong with the cerebellum which might be affecting balance.
9. The failure to latch on and suck as a baby might have been caused by damage in the womb. Rather than the pneumonia she was born with, causing the failure to latch. There is no way of telling.
10. She is going to ask about Gentamicin Overdose.
Leo played by himself all through our session and was really, really good. I am so proud of him.
Which is ironic, in the light of B having a phone call from his mother this morning where she told him that she 'was ashamed' that Leo was sat on the sofa with no pants on at nine thirty AM on Monday when they came to say goodbye after their weekend down here.
* Postponed from last week due to the embarassing 'running out of diesel on top of the hill in the sleet and discovering one didn't have breakdown insurance' incident of which we will not speak. Okay?
** Have you noticed I am also using this blog as a handy memnonic device to write down what happened medically and when, whilst it's still fresh in my mind?
Monday, 12 December 2011
It's really getting to me now - we are constantly having to push and chase and poke to get things moving along, on every level - the benefits she is entitled to as well as medical stuff. The DWP managed to lose my carer's allowance application from June and that has only just been sorted - by me doing another application. We are involved with seven different health-care professionals - physio, speech and language, ENT, audiology, paediatrics, the health visitor and the GP; the disability social work people; various different benefits departments; and support workers from Nenna's nursery.
I think that the level of support we are getting on a pastoral-type level is fantastic - the social workers and the HV and nursery are all brilliant. As are the medical people, in their individual fields. As B has just said, they are an information-gathering organisation, not an information disseminating one. As for the DWP, the least said about them the lower my blood pressure will be.
Whilst we are drowning in all this, all Leo's crazy pre-school can focus on is that our payment for this month is one working day late. Snippy email and everything. To which B was equally snippy in reply. We are not moving him, incidentally - we think he is too settled and it's only twenty weeks until the end of the summer term.
I am trying to get in to the Chrismas spirit by knitting frantically in front of an open fire and shopping for slippers.
Sunday, 27 November 2011
Friday, 4 November 2011
In my head, I am still twenty and Tank Girl.
In reality,though, I will never have the energy to fight against Water & Power again. And my thighs lack the muscle tone to wrap round someone's head and break his neck.
We went to Ikea today. Tank Girl never went to Ikea. I'm willing to bet my life's savings on it. We bought cupboards. We had meatballs. We loaded more weight than a car should reasonably be expected to carry on to the roof and we came home. In the rain. And the traffic. And we were late picking up Nenna from nursery.
Nenna was tired and turned out to have a temperature and a chest infection. So she's on antibiotics and we are hoping it doesn't get any worse in the night. Because then we have to take her to A&E. And that will be crap. And also fuck up our house-moving plans over the next few days.
We are moving, did I say?
We have found a bungalow half a mile down the road, in the village. It also has a flat garden, so the Plummeting Risk is very nicely mitigated for Nen. She has been fitted with a protective helmet and special orthopaedic shoes to help her mobility - but we still need to watch her all the time and it is exhausting, to say the least. Like having a baby that is just walking. She still cannot stand up by herself without something or someone to pull herself up on and she falls so readily and does not put her hands out to safe herself.
However, all the test results that have been done over the last six weeks have come back clear. She does not have muscular dystrophy or anything like that - that they can test for. This leaves us in the less-awful-but-still-unnerving position of just not knowing what we are dealing with. She is not putting on any weight, although she is growing - she is taller, but there is nothing to her. She has a dietician appointment the week before Christmas and we are feeding her as much as we can. She is very on-and-off food - when she is hungry she will eat almost an adult portion and then not want anything at all for a few meals after that. She has an appointment for grommets to be fitted at the end of the month. This will also mean that when she is under general anaesthetic, an in-depth hearing test can be done, by studying the electric activity in the brain. We are not sure whether she still needs grommets - but she is seeing the ENT consultant the week before the operation is scheduled, so we can talk about things then.
I bet Tank Girl doesn't worry so much about her children and moving house and whether the cupboards will go together smoothly and whether she should have bought that drill. Or about her daughter having to wear a protective helmet to stop her hurting herself when she falls over. Or that her Tank-Girl Mother refuses to accept that there might, just might, be something that is preventing that daughter from being a 'normal' little girl.
I feel old and I feel defeated and I feel sad.
Nenna likes her hat.
For tonight, that is all.
Saturday, 24 September 2011
Because of Nenna's mobility issues, we are going to need to move house before too long. This house, although lovely, is unsuitable because of the Plummeting Risks associated with the stairs, because one single bedroom leads out of the other (meaning we can't stairgate Nenna's room without cutting Leo off from the toilet) and because the doors downstairs open directly on to a cobbled courtyard which she cannot walk on safely and which is Very Bad when she falls.
Option 1 was a static caravan, with temporary agricultural planning, on my Mama's nursery; it has some advantages, but we've decided against it, mainly because my Sensible Friend got me to think about how I'd feel in the middle of winter after it had been raining solidly for a fortnight and I was trapped inside with the children and B, all going stir crazy.
So, we've gone for Option 2, which is to look for pretty much as ideal-a house as we can manage to find. This place is lovely, we have no pressure to get out, and we can take our time looking.
We want somewhere with a larger kitchen. With a flat garden that isn't too big. With outbuildings suitable for the incubators and brooders. With three bedrooms and some storage in the house. And woodburners.
Yesterday's viewing was a wing of a manor house owned by some very, very posh people, with the use of a walled garden. It was BRILLIANT. But you can't see the garden from the downstairs windows of the house; so a no-no from a supervision point of view.
Today, we went to look at somewhere else, also close by. It pretty much ticked all our boxes. It's not available until November, as the landlord is having some remedial damp work done. That will give us plenty of time to declutter and sort out everything; I am on a roll, sending things to the charity shop right left and centre. It's a great feeling.
In other news, we all have chest colds and Nenna and B are on antibiotics.
For today, that is all.
Thursday, 15 September 2011
B took Nenna for her Paediatrician appointment on Monday.
It was inconclusive. They now think it is probably not brain damage, because her cognitive function is okay (in our own observation, they have not tested that). So the next step is bloods to test for a raft of things, including vitamin uptake. She hasn't put on any weight in the last six months, which is bizarre given how much she eats; and she has 'some facial dysmorphia'. I have just googled it and wish I hadn't as my head is now full of foetal alcohol syndrome and fragile x.
Ah internet, how doest thou guilt-trip me, let me count the ways.
Some of the blood will be frozen in case further tests need to be done at a later date.
The consultant is going to kick the grommets people up the arse as it appears that we have fallen in to some kind of ENT black hole; but apparently the balance issues are not connected with fluid in the middle ears as they are too severe. It could be related to problems with the inner ear, though; not sure what can be done about that, if anything. I suppose if ENT get their fingers out, all that will be tested when they put her under for grommets, if they still decide that is worth doing. Her hearing seems okay at the moment, though.
She still cannot walk on anything other than a completely flat surface unaided and even then she falls randomly. She in-toes very badly and her general muscle tone is very poor. She is being referred to Occupational Health for the fitting of special boots to give her ankle-support and a helmet to protect her head when she falls.
Her speech is still very garbled and unformed. There is a lot of dribbling, mouthing and tongue movement as she tries to work out how to use her mouth to make sounds. However, she is picking up signing at a rate of knots - B and I are struggling to keep up. We are going on a course run by nursery in December. All the staff at nursery are learning, too - they were anyway, but because Nenna really needs it to communicate, they are very motivated. Nursery have drawn down funding for an extra person to supervise her when she is playing with the 'big children', ie, her peers, rather than remaining in the Under-2 room with the little children. The other children understand sign as well.
Neither of us are coping all that well at the moment, but I suppose we'll get used to it all. No other option, really. The thing that is getting me is the lack of a diagnosis so far. I like to have handy boxes to put things in, to provide me with a nice framework to hang stuff on. I'd got used to the label 'brain damage' - not a great label, but one I could work with.
Now I'm label-less again and floundering around in the murky pond of denial, uncertainty, grief, mourning, resignation and all those dark feelings. To move forward and get on with things, I need to reach acceptance. I have even caught myself thinking that if she was dead, then it would be over and I wouldn't have to deal with stuff any more *.
Not knowing is very bad.
I need to be back in a place where I accept that this is how it is. That this is the hand that we have been dealt. That this is a gift to us, an opportunity for us to learn - who knows what? About ourselves, about other people, about each other. I don't know. Nenna brings me so much joy - she is truly a special person, with so much laughter and compassion and strength and curiosity about the world around her.
I cannot fuck this up for her. I need to find a way through and as of right now, I am shut in the dark.
* Yes, I am speaking to my GP about this and I have asked to be referred for counselling
Friday, 26 August 2011
A friend of mine (near Lancaster) is having a bit of a clear-out and has the following self-sufficientish/knit-your-own-yoghurt stuff for sale:
1 Tchibo Food Dehydrator (circular sort) used once or twice but in perfect condition with 6 trays - £20
1 Bohmann Mincer with sausage stuffing attachments used twice - £50
1 Meat Slicer (electric) - Type that Lidl sold a few years back - £20
1 Covatutto/Novital 24 Semi-Automatic Incubator with all the dividers - £60
I have the turner for this to make it a fully automatic but it seems to be a bit problematic although I can send it as well and it's up to the buyer however new ones can be bought from Ascott about £35 and I've had several successful hatches from it
1 Kids Candy Floss Making Machine - Great for making a mess with the kids in a controlled way - £20
1 Ascott Dutch Cheese Press like this - £30
She can post, with P&P on top of the price, obviously. Please leave me a comment if you are interested, and I will pass your details on.
Sunday, 14 August 2011
B has started his own blog, probably mostly about Bee Keeping.
We have about thirty-five pounds of honey and Ma's house is covered with a thin film of it. B and a friend went through our two hives last weekend and this week we have taken three supers off and extracted them. It is three years since we had any honey of our own and it feels like a MASSIVE achievement. B is rightly very chuffed with himself, as he is Chief Bee Wrangler, in the same way that I am Chief Chicken Wrangler. The blog is a vague attempt to keep track of what he has been doing. Please do pop over and say hello - Plan B from Outer Space.
Next decade, I will be getting him on to twitter ;).
For today, that is all. Thank you and goodnight.
Sunday, 24 July 2011
Things are moving along.
Nenna has had a Speech and Language assessment; yep, there is 'delay'. No surprises there. We need to focus on small, useful words like 'more' and 'gone' so that she has a vocabulary that is useful to her. Fabulous Nursery* are very much on side - they do signing anyway and we are running to catch up with both them and her. She told her first sign joke last week; suggesting that there was a pig's tail in the Oxtail Soup.
I cried as well as laughed.
We have letters from Paediatrics, Physiotherapy and Speech & Language with their conclusions - I have sent copies of them off with the forty page application for Disability Living Allowance. Nursery are drawing down emergency funding for an 'additional adult' to be with her when she goes in to her peer group. At the moment, she is still in the 'Baby Room' with the under twos, because of her mobility issues. However, she is gradually integrating with the Big Girls, half an hour at a time, with adult supervision to prevent any ponking**. The aim is that by October half term, she will be fully integrated. I guess the 'additional adult' thing will be re-assessed as we go along, based on how she gets on. The referral for the MAISIE project is also in progress.
I feel that we are in the system; and now we are here, it is, actually, pretty good. We will have to see how it goes. I feel that despite all the crap, we have a very good professional support network, nursery is brilliant and our family are rallying round. It is just a case of waiting now, and seeing what transpires at the next Paediatric appointment, when they will do further blood tests to see if we can diagnose what is wrong or whether we just need to get our heads round it being 'just one of those things'.
In the meantime, Nenna is busy and happy. And the rest of us aren't too bad, either.
I am still not entirely happy with Leo's Posh Pre-School; they are, in my considered personal and professional opinion, a bit up themselves. I don't think it's appropriate to talk to parents in the same tone of voice as you talk to naughty toddlers. I don't like their complete inability to focus on anything that isn't written down. I don't like the fact that they have assessed a quarter of Leo's development milestones recently as six months behind his development milestones at Fabulous Nursery before Easter; and have therefore shot down any hope we had of getting him to start school this September rather than waiting another year. I don't like the fact that this was presented to us as a fait accompli and effectively bypassed any discussions we had had with the Headmistress of the school without telling us that we are entitled to an independent assessment by and Educational Psychologist as a right. I don't like the fact that they sent us a letter asking us to take him to hospital and get him tested to confirm or deny whether he was allergic to kiwi fruit; and phoned our health visitor to try to get her to involved; and threatened to make him sit at a separate table to eat his lunch if we didn't.
Actually, writing it all out like that, it's okay to be pissed off, isn't it?
Anyway. I have comforted myself with the thought that, actually, that is their lookout - if by November he is bored enough to start dismantling their setting, then they will have to deal with it and I will laugh at them. On a personal level, he is settling in very well and is starting to make friends. I am torn whether to move him back to Fabulous Nursery. I'm trying not to let my (very well concealed) irritation at them get in the way of doing what is best for Leo.
B and I have taken deep breaths and are taking the time to look after each other.
I have been asked to sell eggs fortnightly at Minehead Farmer's Market. I did the first one on Friday and I made a small profit. No-one was expecting an egg stall to be there, as their current egg seller dropped from weekly to fortnightly a while back. Also, it was absolutely torrenting down. So I am hoping that over the summer I can work it up to a decent amount. I enjoyed myself.
I think for now that is all.
* You know who you are!
** Bonking your nose on a tree
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
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
Wednesday, 15 June 2011
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
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.
Monday, 30 May 2011
I decided a while back that I would start offering courses for people who want to learn about chickens - based on the Omlet model of a few hours in an afternoon.
The Omlet model seemed to be an hour and a half or two hours for fifteen quid or so. Some of them are advertised by people who have only been keeping birds for a year or so themselves; and it is VERY focused around Omlet kit, which, IMO, whilst lovely-looking and bespoke designed, is waaaay past a lot of people's budget.
Given that I have a teaching qualification and have been poultry-obsessed since my early teens, I thought that I could give it a go and miss out the Omlet-focussed bit. So I sat down and put together a lesson plan for a three hour course, involving handling birds, looking at our various different kinds of purpose-built and/or cobbled together housing and finishing with a chat over tea-and-cake, and I whacked it on my website at £30 a head; and on the Omlet website too. And forgot all about it.
This morning I got an email from someone who is interested in coming, along with her teenage daughter. I have arranged for them to come on Friday afternoon and I am now having slight first-night nerves. It's nothing that I haven't been doing informally with anyone who has come to buy birds from me - without the tea and cake, usually, admittedly - but it's a different thing to have an informal chat with a customer than it is with someone who is paying for the privilege.
And what sort of cake should I make?
Friday, 6 May 2011
For some time now, we have been wondering whether Nenna is 'okay'. She has been slow to walk and slow to talk. Her balance is not good and she doesn't put her hands out to save herself when she falls. We are in the Paediatric referral system and she was thoroughly checked by a Paediatrician in January after our Health Visitor expressed concerns.
The assessment concluded that her physical development was on the bottom centile, but still just 'normal'. She was referred for Speech and Language therapy and a follow-up appointment was made for September, at which point if she is lagging any further behind, they will start doing blood tests for things like Muscular Dystrophy. There is no history of this is the family, so that's a long shot and therefore quite reassuring.
In addition, ENT examined her and tested her hearing again and concluded that she has glue ear, which goes to some way to explaining her speech difficulties and perhaps also her balance. She has a follow-up in June and if there is no change then apparently grommets are an option, to drain the inner ear of gloop.
So far so sort-of-okay.
However, after a couple of falls over Easter which caused a serious cut and a nose-bleed-and-black-eye , I took her to the GP on Tuesday. Our GP is a very down to earth Mid-European who doesn't beat around the bush or suffer emotional bullshit gladly. She is re-referring us back to Paediatrics for an earlier follow-up and for Occupation Therapy to help Nenna's walking and balance. She says that her opinion is that there is probably some (minor) brain damage somewhere that is affecting her motor skills and that OT and Speech Therapy will help map new pathways in the brain. The GP says that she doesn't think that any blood-tests etc will be necessary; it depends on how the next Paeds appointment goes I guess.
My baby has brain damage.
It's MINOR brain damage. And is probably fine.
Some of you reading this will have already read my brief update on facebook on Tuesday when I got back from the GP. Since then, B and I have gone through a whole range of feeling. Panic. Fear. Disbelief and belief. Pain and numbness. Sadness. Reaction, over-reaction, under-reaction.
My beautiful, happy, smiling daughter is still the person that she was last week. She will still be the person she was going to be. Over the last week or two, I have begun a conscious practice of gratitude every day. Literally counting my blessings. She is always on my list of things to be thankful for and she is, very much, one of my blessings.
Tuesday, 12 April 2011
I am attempting to type with Simpkin, elderly and much loved cat, trying to get me to tickle his ears at the same time. He is doing this by occasionally very gently taking my typing index finger in his teeth and pulling it towards him. It hurts. He also has his paw stretched out on to my wrist.
This morning, B arrived home after a five day trip. We took the children in to town for lunch and do some errands. Lunch went well. Then B took them to the park to feed the ducks whilst I had some acupuncture. Also good. Then we went for tea-and-cake.
Leo's piece-de-resistance involved marching round the tea-and-cake shop loudly announcing "I AM ATTENTION SEEKING! I AM ATTENTION SEEKING!" whilst I curled up and died a bit inside.
For today, that is all. Gin anyone?
Saturday, 2 April 2011
B: What's this?
Me: Dried apricots.
Me: No, not really.
B: What, then? Dried mushrooms?
Me: Dried pig lungs.
B: Urgh. Why?
Me: Sue brought them for Snipe.
B: What, will Snipe EAT them?
Me: She's a labrador. She eats anything
B: But pig lungs? Really?
Tuesday, 29 March 2011
I have started doing a car boot sale for Ma every Sunday. I take her plants and cut flowers in The Van and pick a boot sale and off I go. I sell my eggs. And once I get the Environmental Health chap to come and look at the kitchen, I want to make jam and pickled eggs and what not to sell, too.
So far I have been to about half a dozen. I missed a couple of weeks because of The Inexplicable Dizzyness Episode. But this week I went to one that was only a couple of miles up the road and despite the low footfall I did pretty well. That's not The Thing, though.
The Thing is that I met an old friend of Pa's.
They worked together in the 1950's at a very well known Chrysanthymum* nursery at Wellington in Somerset, before Eddie left and eventually bought his own place. Pa was godfather to Eddie's son. Ma remembers going to visit Eddie and Sally when she and Pa were courting and staying up until two in the morning, playing darts or cards and shooting the breeze. Pa! Two in the morning!
Eddie is seventy-nine this year and Sally is eighty. He's an experienced car booter who is still growing plants and selling them on and in the season does three or four sales a weekend. They don't have much glass left in their nursery any more - they can't afford the oil to heat the houses - and a couple of years ago he had a heart-attack. Sally fell badly last autumn and broke her pelvis and has osteoporosis. Their son - Pa's god-son - has suggested that they sell their nursery and buy somewhere in town that would be easier for them. But Eddie knows that that would be the end of Sally.
So they stay on.
Ma can't afford the oil to heat the glass. She is living hand to mouth now Pa has gone and doesn't have his pension. Sister Natalie is looking after the household expenses but she can't afford to bankroll the business. If B and I want to make it work, we need to bring Ma in about seventy quid a a week on top of what we do for ourselves.
That's our ground rent.
Ma grows it. We sell it.
It's good to have a project.
I cried on the way home after I met Eddie. I miss Pa. It sounded like he did, too.
* My first word was Chrysanthymum. Just sayin'.
Sunday, 27 March 2011
Right, let's get going again then.
This week - car boot sales selling plants and eggs, toddlers nicking toys from nursery and making everyone laugh at their determination, chickens starting to lay well, eggs hatching in the incubator, B home for the weekend from a job which involved someone firing eggs wrapped in condoms out of her lady-bottom (waste of good eggs!), sunshine, daffodils, chicks and broodies, more head-space, cash flow evening out instead of terrifying peaks and troughs, grass growing, sheep about to lamb.
Saturday, 26 February 2011
I have been collecting eggs this week to set as a hatch. I've got Salmon Faverolles, Barnevelders and Barnebars to go in tonight. The grass is just starting to grow; lambs are turning up in the fields around us; and we've started letting the woodburner go out overnight.
I am back after hibernation, I think.
Monday, 17 January 2011
It's been a quite stressful few days. Sister Natalie was taken in to hospital a week ago with very bad abdominal pains and had a gallstone the size of a golfball removed last Tuesday. She's home, but it was pretty horrible for her and tiring for Ma. We have been doing our best to provide support; but now we have all come down with a yukky cold/cough and are staying away, on the grounds that the last thing that someone with a golf-ball diameter hole in their stomach wants is a cough.
In the meantime, we have worked really hard and have mostly got the breeding pens for the poultry set up. The Barnevelders and Salmon Faverolles have come back in to lay and I have a test-hatch in, so I am starting to take orders. The electric netting is round the pens, so Ma doesn't have to shut them up for us whilst we are confined to barracks.
The children are playing with a HUGE amount of Happy Street stuff that we were given for them in November. I am not sure it all fits in the living room when it's laid out - but it's keeping them occupied and that is good.
Things are mundane.
I LIKE mundane.
Friday, 7 January 2011
The year has turned; and I feel quite happy about it, really. We are no longer snowed in. There is a modicum more light in the evenings - just a minute or two. But my internal clock has noticed and sighed with relief.
I always feel that the time between mid-winter on the twenty-first of December and Twelfth Night on the sixth of January is a sort of fallow, waiting-time. Everything is paused - weather, plants, animals; planets, the moon, the sun. Everything is in stasis, holding it's breath. And then, the world turns. It slips along, past some some invisible marker. And everything starts to breath again.
The hens are starting to come back in to lay - B is upstairs, drilling holes in the incubator to attach the automatic turning motors as I write this. I have done a seed order. The bulbs in the pots by the door are (rather optimistically) poking a shoot or two above ground. There is a the tiniest, almost indiscernible glow of sap rising in the hazel in the hedge behind the poultry pens.
This year, no-one has been in hospital over the festive season. This year we are not in shock from bankruptcy and bereavement. This year we do not have a new baby to exhaust us. This year I am not suffering from post-natal depression.
This year, we have enough head-space to make plans.
Be afraid, Universe. Be Very Afraid.