Broneirion

We're committed now. Broneirion here we come. Planning meeting today with the girls. Always good fun. Or hideous torment, depending on your own feelings about spending time with lots of 10-14 year old girls. We're taking 30 this year. Hmmm. I know I'm tired just thinking about it! Too tired to blog actually; or at least to blog with any degree of intelligence or hope of providing interest to the readers. So please feel free to click through and take a look at where we'll be heading, in just a few short weeks.

2 showers, 30 girls. And leaders. Ouch.
Cooking for 45 on wood fires - interesting, smelly, warm, strangely satisfying.
Juggling Guiding with Mog and Little Fish - always good fun.
Watching the Guides learn new skills, overcome fears, make friends, laugh at silly non-boy-related stuff - never loses its appeal.

That's the plan at least.
Tia

Rainbows last night for Mog - and a cookery competition. Divide the girls into two groups, assign a Young Leader to each group, and watch as the teams cook biscuits. Mog's team made chocolate chip cookies, the other team made chocolate shortbread. Mix, bake, then wave frantically in the air as the next group to have booked the church hall get fretful with the delay. Rainbows and leaders alike get to taste the biscuits and vote for their favourite. I liked the chocolate shortbread (I know, traitor to my daughter); Mog choked on that and did not choke on the chocolate chip from one of the cookies, so we assumed the chocolate chips won her vote.

One very tired happy little girl all snuggled down into bed and ready for sleep - one equally tired blogger about to follow her when she switched from happy and relaxed to cough splutter gasp wheeze sneeze CRY cough cough gasp bubble bubble. Reposition her and a semi smile, but more gasp bubble cough choke purple child. A spot of suction, and all is sweetness and light again. A peaceful night after that.

One busy morning, getting Mog up and out (a Mog with no signs of any further coughing or choking, very pleased with herself and ate her breakfast beautifully). Little Fish also awake in good time, feeding and wearing her breakfast in equal measures, and then into clothes and ready for the day.

Mog into her bus and the usual frets from Little Fish about the unfairness of being the youngest and not being able to go on the school bus every day. Instead I load her into our bus and head off for the opposite end of the county, to a coffee morning held for parents of medically complex children. I've attended a few events run by this particular charity, but this is the first coffee morning I've managed to make it to. Definitely worth it; this one was hosted by the charity's patron, who happens to live in one of the grand old country houses peppering our county.

As we drove past the gate keeper's cottage and through the deer park I couldn't help noticing a sign to the side of the drive. "Give way to aircraft". Scanning the skies I saw no helicopters or biplanes, and instead we arrived uneventfully at the back door, unloaded our distinctly scruffy van, and hunted for an entrance. Two peacocks posing as living statues scared Little Fish first, followed by a beautiful brown dog who attempted to investigate her gastrostomy. This last ensured that LF would stay glued to my side for the first half hour of the morning, but she did relent eventually and consent to receiving the cuddles and general adoration the world likes to bestow upon her. Oh, and a biscuit too of course.

Two nurses and a play therapist, and LF initially the only child for them to play with. One hand firmly wrapped around my finger to prevent my escape (she is a suspicious child; I wish she would learn to believe me when I tell her I'm not going anywhere or that I will be right back), she consented to make a Father's Day card with a fish on the front. LF has no father, so we now have the choice of sending it to Grandad (who will be delighted with it) or to her Great Grannie, who is owed a thank you card (and who would be equally delighted). I'll decide that in the morning, or possibly when I've worked out how many other Father's Day cards she'll be making in how many other different locations over the next few weeks. It's a confusing world for Little Fish - she has one Mummy and that's it, her playmates mostly have a Mummy and a Daddy, and her sister has TWO Mummies and a Daddy, and two extra sisters. For now this doesn't bother her, she takes a close look around and then tells the world that I am her Mummy and she is my baby. We'll deal with the rest of it later. One day.

Just as Little Fish is getting into her stride and working out how to include the entire circle of adults in her games I realise that it is time for us to go. A quick(ish) sprint across the county, we call in at home just long enough to collect water and a banana, then over to the girls' school for a meeting.

The meeting is due to take place between Mog's speech therapist, the specialist speech therapist for augmentative commications aids, Mog's teacher, and myself. I arrive at the classroom at 1PM, where the teacher informs me that she has only just been told about the meeting, and cannot make it. Frustrating, but not her fault. I am also told the meeting is not until 1.30. I change LF in the class bathroom, and then we head back up to reception at a leisurely pace, so that I can feed Little Fish before the meeting. Here I am greeted by a slightly frantic speech therapist, who has been waiting for us; the meeting started at 1.

We discuss problems with Mog's communication aid (the biggest problem being, no one seems to be able to use it with her, it isn't a priority, she is bored with it, and she is completely dependent on an adult helper having both hands free in order to support her accessing it. Not ideal) and come up with some hopefully workable solutions (switches on a headband and a wrist strap so that she can use them independently). Hopefully that'll be in place soon, and then she should be able to start making herself heard in more detail again.

The meeting is nearly over when a runner from the classroom joins us; can I come please as Mog is fitting badly. I run; she is. Together we watch her for a few minutes, and then I gather up the school's selection of emergency medication for her and bring her back to our meeting, thinking that possibly the class drumming session is not the best activity for her until she's finished her seizure run. It is at this point my telephone rings, reminding me that Mog's other family are visiting this afternoon. Excellent timing. We debate meeting in town but decide that they will come to us when they have finished shopping. On reflection this was a very sensible decision; they are shopping for shoes. I do not want to think about what might happen if I were to take Mog into a shoe shop and come out without a pair for her!

Having totally impressed the speech therapists with my professionalism -lateness, bringing another child and feeding them during the meeting, taking personal calls, choosing to talk whilst my child is fitting merrily* - I allow them to finish up the meeting and decide to bring Mog home with us now rather than risk getting home only to have to return to school or chase an ambulance to hospital.

We get home; Mog is instantly revived and giggling. Little Fish demands more dinner. We make some rather average blueberry muffins using our nice new Floridian (well, Walmartian but still acquired on holiday) cup cake holders. Very cool silicone with feet. I like. Little Fish likes too - I keep finding them all over the house where she has removed them from the door and added them to her collection of babies. Nice cases, less than wonderful muffins, but still perfectly edible. No recipe - they were of the "open box, pour into bowl, add egg and oil, stir, shovel into cases, bake" variety.

A bit of a breather all round and then Mog's other family arrived. Mog had chosen some bargain trousers for her sisters whilst we were away, so she had those on her lap together with a photo album. Her sisters in return had brought her a pot of super thick luxurious yoghurt - very very delicious and just the right consistency for both girls. An ideal present; nearly as good as a new pair of shoes, and she definitely doesn't need any more of them!

Three girls (Mog's sisters plus Little Fish) all sitting on the stool playing the piano together very gently and more or less tunefully; Mog listening intently and smiling as she recognised some of the tunes. Fun in the ball pool, a spring clean for the doll's house, and suddenly it's bedtime and time for them to go.

Two girls very tired and posted into bed. One mother enjoying the heady scent from theseand ready for bed herself. Tomorrow we get to spend the day with all the girls who are coming to Guide Camp in the summer, and hopefully persuade the parents that their precious darlings really do need to learn how to wash up without a dishwasher and to sleep without a nightlight before they get into the coach in a few week's time.

Night all,
Tia

*I'm not really heartless; Mog has hundreds of seizures every single day; if we stopped the world for every single one of them we'd never get anything done. Unless her breathing is compromised or she is unhappy, we let them run for 30 minutes before treating them. They usually last 27 minutes - this one was no exception.

The Pizza Diet

Here's one for my dial-up friends (not friends I make by dialing up numbers on the phone, that would be weird. Friends who don't have broadband). No photos, and only a small amount of text. A very small amount of text actually - just enough to ask one question.

Why, after weeks days of eating boring healthy balanced meals and watching my weight stay exactly the same, do I find that the morning after having eaten a rather large and delicious takeaway pizza, I have somehow shed 9lbs in the night?

Tia

A day in my life

Little Jenny Wren is inviting people to join her in posting "A day in my life" for today, Wednesday 15th May. So here's mine.

I had a good start to the day; I awoke to this:
which is always a nice start; it means neither girl has needed me in the pre-dawn hours. Little Fish did decide to let me know she was awake as I was getting up, but since that was 6.30 I think it was nearly reasonable.

Next stop the kitchen; coffee and feed the fish.Breakfast for both girls, tea for our morning carer, get Little Fish dressed as the carer gets Mog up, and make sure Mog has everything she needs for school.Milk, check. Meds, check. Home/school book, check. Lunch, check. Spare clothes, check I obviously didn't check properly; she came home in a spare school tshirt as I failed to put in an extra of her own. Oops.

Sort out our breakfast thingsAnd a pile of laundry
Then wave Mog off on the school busNormally at this point, the next step would be to walk Little Fish over to preschool. But today she had an appointment at the Dr's, so instead we loaded up our own bus and headed off into town. Posted a letter, payed a bill, and zipped up to the surgery, where we sat quietly for 30 minutes until it was our turn.

Little Fish does not have diabetes. Hurrah. Our Dr is going to push urology to do some proper investigations, and if that doesn't show anything, then the next step is to look at diabetes insipidus. But it's more likely to be a urological problem. Since we already know that she has urology problems, I'm thinking that's sort of good news.

Back in the bus and dropped Little Fish at preschool. Home in time for some of thisand a bit of a sit down, before walking back past thisto collect Little Fish from preschool.

We meandered home togetherAnd had lunch
before heading out into the garden and realising that whilst theseare very pretty, and so is thisI should probably be spending less time admiring them, and more time doing something about thisand maybe adding something to thisI grew carrots in this window box a couple of years ago, mixed up with strawberries. They both grew quite nicely, although the carrots were only an inch or so long. Tasty though. But, enough pondering, time to load Little Fish and I back into the van and head off to our local cottage hospitalto have Little Fish's eyes tested.

I am still mildly amused by the sign on the window at reception:So is it my name you want, or my "name"? (Hello, my "name" is Inigo Montoya, It just doesn't have the same ring)

Eye tests went fine - Little Fish's eyes are working better than they were last year, however her long sight has worsened. So her eyes are more functional but less effective; not entirely sure how that works. But the good news is her sticky eye is likely to be nothing more than a side effect from wearing the wrong strength glasses, and unlikely to be anything more sinister. We have a new prescription (after much screaming and sobbing from Little Fish - she'll let the nurse stab her finger for a blood sugar test in the morning but won't let the optician shine a light in her eye in the afternoon, strange child), and will go and choose some new glasses next time we are in town.

Home again, and time to do a spot of this:whilst meanwhile Little Fish takes a turn with the camera.I am quite fond of this one. I like my ceiling; it is so clean and tidy up there. There is an awful lot of wasted space on a ceiling; I sometimes wonder about somehow coating the ceilings in this house in velcro, and just tossing toys, junk, clutter children up there at the end of each day. Mog came back from school, and we spent the rest of the afternoon in our usual round of cooking, feeding, medicating, cleaning up, changing and posting children to bed.

Little Fish has settled after her now obligatory round of calling out, being comforted, calling again, being comforted and turned, calling again, being comforted and having the door adjusted so that it is neither open nor shut, calling again and being told she needs to go to sleep, and finally silence. Mog stayed up an extra hour, and kept me company as I ate my healthy and nutritious evening meal takeaway pizza. What? it had vegetables on it...

Now I can hear the gentle hum of Little Fish's Nippy, and Mog is snoring less gently in her room. My brother has just phoned for a chat, and informs me that the weeds in my flowerbed were are Creeping Buttercup, not Ground Elder. And that my new nephew is doing superbly, my niece is happy, and he and my sister in law are surviving nicely. All good to hear.

Uploading many photos and blogging this for you all; I am now about to say goodbye to my MSN friends for the night, and will see you all in the morning
Night
Tia

Roast Beef and Raspberries

No, it's not the latest Delia Smith (at least I hope it isn't), it's Little Fish's latest discovery. Both of them very acceptable apparently, but only by themselves with nothing else on the plate, and the raspberries must be two at a time or not at all. Fun times.

Still, it's progress at least. The other progress we've been having these past few days has not been so positive. There's the whole scoliosis thing. Then at her annual review it was strongly suggested that her learning disabilities do in fact put her into the "severe learning disabilities" bracket, not the "delayed, she'll catch up, won't ever be top of the class but will cope" bracket. There's the surgery she'll be having over our half term holiday. Tomorrow we have an appointment with our GP - our community nurse believes that she is reacting (i.e. allergic to) her PEG, and that this is the cause of the general manky stoma. Oh, and that the wee problems are quite possibly related to diabetes.

This afternoon Little Fish has been complaining about sticky eyes. Her eyes are quite often pink and scabby; her Nippy blows air into them all night long if it gets readjusted in the quest for a perfect thumbsuck. So I cleaned them up, not really looking at them just gently wiping them with a bit of gauze on autopilot. It was only after the 3rd or 4th "My eye Icky Mummy" that I took a proper look, and realised they weren't sticky as in crusty and gooey, but sticky as in the eyeball was stuck in one position and she was needing a gentle wipe (or was poking herself with a finger) in order to get the eyeball moving again. I'm not certain, but I'm pretty sure that's not normal behaviour for a straightforward squint caused by long sightedness?

The timing is good - tomorrow afternoon she already has an appointment with the eye doctor - but I could really live without additional issues for a few days please.

Meanwhile, when Little Fish isn't raiding the 'fridge for raspberries and roast beef, she's now taken to wheeling herself up in front of Mog, pulling Mog's foot and then complaining "Mummy, Mog kicking me". Happily they both find it hilarious.

Little Fish has made progress in other areas too. We've been working hard on her vocabulary. The school bus driver, Mick, is no longer worried about paternity suits. Instead, Little Fish now wheels herself off the bus, turns around and shouts "Bye Bye Michael, Bye bye Michael's bus, bye bye Michael" until he has driven off. He seems to find this just as embarrassing. Meanwhile the escort wants to know why Little Fish refuses to acknowledge her at all. I'm sure it's nothing personal.

Tia

Bright Sunshiney Day

Bob came back last week. He had to leave again; the weather was not good enough for him to finish the outdoor work, and apparently it wasn't worth coming back just to finish the inside bits and pieces. He's been waiting for a sunny day to fit our new gate.

It's been warm, sunny, balmy weather for the past week now. We've been in summer clothes and sun hats and I have been obeying my optician who tells me I have middle aged eyes (query: if my eyes continue to age before the rest of me, will they be able to retire early and what implications would that have for the rest of my life?), and wearing sunglasses. We've been eating outside every day, the air is buzzing all around with the sound of many lawnmowers, and the scent of many barbecues. And still there is no Bob - do you think this could possibly be the wrong kind of sun?

Little Fish and I have been digging in his absence; I have been digging up yet more ground alder and replacing it with somewhat nicer plants. She has been taking the exposed ground alder roots and carefully burying them in her own "gigging 'oles". I'm not convinced this is helpful.
Tia

Scenes from a stationary vehicle

I think we found nearly all the red lights between here and there (and back again).
We found level crossings for Mog and Little Fish to laugh at (the bumps in the road, not the concept!)
We found many many older English churches
And pretty towns.
More red lights, more churches


More churches - it's very considerate to place red lights near so many churches, plenty of time to admire them.And finally out of towns and into the countryside proper,

The kind of countryside where seven villages will have the same first word in their title, and differ only in the Saint's name following. As I drove through all seven villages repeatedly, desperately hunting for the correct saint I did at least get to appreciate the many fields full of rape.
Glorious, golden, oilseed rape. Beautiful. It smells of the honey my grandmother's bees used to make, and I hear my great grandmother praising its colour as we took her for a drive through the country. Nearly blind, she could see the yellow but was insistant it was daffodils. Whatever it was, it was pretty and it made her happy.

So it makes me happy when I see it. And happily, none of us suffer from hay fever.
I had planned to give you a picture of an ancient windmill as well as the more modern variety, but, most inconsiderately, the lights by the windmill were green and the traffic was all moving. Sorry folks.

Finally, after much pausing at crossroads, and successfully relocating the same crossroad signpost from all four directions, and after a frantic phonecall, we arrived at our friends' house.

And had time to smarten ourselves up ready for the main event.I was herding children during the main reason for our visit, and there were better photographers than I present, so Tina can give you the rest of the story here.

A peaceful, restful weekend; visiting friends, celebrating a Baptism, watching Mog and my Goddaughter renew their friendship
and watching Little Fish renew her friendship with "Ina" and "Boy"
Please excuse the quality of the last photo; I was hiding inside so Little Fish could enjoy her friends and not worry about needing to be on my lap.

A good time was had by all, and I hope we can repeat it very soon.
Tia