Runaway

This morning Little Fish put her coat on all by herself. As I sat reading through new messages at Special kids in the ukwatched her, she reached over and grabbed it, turned it the right way round, pushed one arm into it, shuffled herself forwards and pulled it over her back, then pushed her other arm into it. She smoothed it down over her legs to hide the fact she hadn't been able to get out of her wheelchair and pull it down at the back, had a go at the buttons, and headed for the front door. It's a shame we weren't going anywhere.

Fast forward a few hours, and, coat removed, Little Fish opened the front door to let a visitor out. She then puttered around in the hall for a bit, and I heard the sounds of a doll's buggy being pushed out of the front door.
We have a lovely back garden. Little Fish prefers the front. She came back in again a few minutes later, and I assumed she'd had enough. No such thing - two minutes later the pram was going the way of the buggy, and Little Fish was set for the afternoon.
Whilst I am impressed with her skills in pushing pram and buggy whilst simultaneously wheeling herself along, I am a little concerned with her parenting skills.
I'm no expect, but I'm reasonably certain baby's feet aren't supposed to be sticking out of the pram like that.

With superb timing, Little Fish managed her escape just before the end of the school day. This ensured that for the next hour, she had a solid stream of passersby, mothers on their way to collect children, children and mothers returning from primary school, and then older children walking back from secondary school. I think she said "'Ello" to every single one of them, and the vast majority of them replied. It makes me melt how even the toughest looking group of teenage boys who round the corner playing loud music, hitting each other and spitting on the street all calm down as the pass her. Most of them manage an embarrassed "awright?" in return for her 'Ello; occasionally one of them will even stop to straighten out the buggy for her or comment on her cool wheels. I love it.

I am however slightly baffled by one woman. She and her children all pushed their bikes across my lawn rather than take the footpath. That in itself is not at all unusual. She then stopped for a chat - again, not unusual. But she then suggested that I put up a fence, so that Little Fish could play outside. I'm not sure what she thought Little Fish was this afternoon. When I mentioned that putting a fence up could be problematic as everyone walks across my lawn, she told me I should put it up set back from the footpath. Hmm, so I should fence my lawn in so Little Fish can play, but I should cede part of my garden so people don't have to stick to the path? I wonder if she'd do the same?

And then the audience ran out, and after a few minutes of calling out incase they were hiding, Little Fish set off up the cul-de-sac in search of new victimsplaymates. And so I had to drag her back inside and find some sort of an evening meal. Perhaps that fence isn't such a bad idea after all. And a six foot high gate. And a spittoon.

Oh, and the keen-eyed amongst you might spot a large abandoned boot in the hedge between Little Fish's pram and buggy. Who loses a boot on the way home? And how?
Tia

Lazy Autumn Bibs

Little Fish goes to pre-school all day on Thursdays now. She missed last week, being somewhat busy and under anaesthetic and all, so today was her first long day. I sent her off, excited, with a couple of pots of slime for lunch, and left her arguing with her keyworker over when exactly she could eat lunch.

And then came home to the joy of an empty house for five whole hours. Bliss. So, what did I do with my wonderful patch of time? All those relaxing things I've not had time for over the summer? Long soak in a bubble bath, back to bed with a good book, catch up on some sleep, or some nice solo shopping? No, for some reason I got hung up on the bib I made yesterday and decided to do some better ones.

Take one piece of flannelAnd cut out a rough bib shape.
Add in a layer of soaker fabric (ZORB)
And a waterproof layer (diapermaker's PUL in this case)
Pin, and then stitch.
I do love my sewing machine. I use my overlocker for speed most of the time here, but it was not happy yesterday with the waterproof layer. So I was forced to dig out the proper machine. I had forgotten how nicely it stitches, what a joy it is to use. Unfortunately, it didn't like stitching the waterproof layer inside out either, so I had to cheat use a top stitch and trim rather than sew them backwards and then turn them around to get a nice neat finish.
Having stitched all the way around the bib, take a phone call from school*, and take a short break to go and collect Mog who is worn out after a busy morning. So much for five whole hours off.
I just had to turn it over to admire the neat train tracks stitch. And stroke the flannel, and squidge the lot; it's all so soft and yummy.
And then trim away all the fabric excess to be left with half a dozen fairly basic but beautifully soft and absorbent bibs. In nice fetching autumn colours.
Mog seems to like them anyway. Or perhaps she was just pleased at not being in school.

The more observant of you might have noticed I haven't photographed the fastener. That's because there isn't one yet. My velcro is iron on, and won't iron through all the layers. My poppers are all fiddly little tiny ones for summer dresses, not extra thick bibs. I'm thinking it'll either be a couple of inches of elastic (practical but ugly), a button (pretty but uncomfortable perhaps?) or a couple of ribbon ties (simple but strangulation risk?). Meanwhile it'll be a safety pin (easy but slatternly!).

Now we are late, so I must run.
Tia

*this part optional for anyone who is not me.

Pretty girls

Mog and Little Fish are turning into style icons!

With Mog it's all about her. Her shoes, her hair, her choice of outfits, her sulk at the thought of school uniform, and rather charmingly, her pleasure at the new dribble mat I made for her this evening. No photos; it's now covered with savoury rice and tomato. She likes to be complimented on her outfits, on her hairstyle, and she's not above kicking people if they don't notice her shoes quickly enough.

Little Fish on the other hand, whilst wanting "Pretty Dress" rather than trousers (just as well since her jeans won't go over her casts), isn't too fussed about what she wears. She has taken to asking me to plait her hair every morning, but mainly so that she can then pull the plaits out and play with the hairbands. Don't ask. However, she is on a mission to reform me. I thought it wasn't until the teenage years that children were embarrassed by what their parents wore. Not in Little Fish's case. "Skirt, Mummy" or "Dress Mummy", and my jeans are greeted with big frowns. A T-shirt is ignored, but a blouse warrants a "Pretty Mummy!" She can't reach my wardrobe which is probably just as well; I'm sure I'd find trouser legs severed to prevent me wearing them. If I put on the wrong (in her eyes) jumper, she pulls and tugs at it and gets extremely cross. But the right outfit, generally a long flowy skirt and a floaty blouse of some kind, gets her utmost approval. "Pretty Mummy, Pretty pretty". Now if only I could teach her to wipe her face before she buries herself in the skirt, perhaps I could meet her sartorial standards more often!

Tia

Purple Prose

Today has not been the best of days. It hasn't been the best of weeks, so far.

We have moved from these


to these.

A sand incident. Don't ask; she's three - it happens! However, in happening, it just cost the NHS £180 (around $300). And I'm the one who got the lecture for it. No more sand for the next three weeks I think.

It isn't all bad. Because we needed to get the casts changed, we spoke to staff at the local orthopaedic hospital. Because we had to speak to the staff, we learned that they were wanting us to come in urgently about a skin infection Little Fish has on her foot. They wanted us to come in urgently, but no one had actually told us this - I wonder how long they'd have left their urgent request before contacting us about it? And because it happened, we got to take a look at her feet and check for pressure sores, and we found there are no marks at all. Great.

Meanwhile, results from swabs taken last week came back. Both girls are growing MRSA in their stomas. Little Fish is also growing a different kind of staph in hers. As well as the third kind of staph in her foot. She likes to be awkward keep life interesting.

So, tomorrow, both girls start a course of a different antibiotic. Poor Mog, she took the last dose of her co-amoxiclav this evening. And tomorrow she'll have to start again with a different one. Pity the poor washing machine too (and its refueller).

MRSA. Lots of us are living with it, without any problems. It's only when it starts causing problems like Little Fish's sore stoma that we start finding out about it. And now suddenly we are modern day lepers. One person does not wish to work with the girls until it's all cleared up. Our carer this evening turned up with armfuls of gloves, alcohol gel, aprons, and paper towels. All except the paper towels we have here anyway. There's a part of me which feels affronted about the fact that our nice old worn soft fluffy towels have been deemed unclean, that our staff now have to use disposables, wiping their hands not only between handling the girls and after touching stomas, but as they exit our house. And a bigger part of me which says it's all just sensible precautions, and we don't want them to pass it on to other vulnerable children. But the small, houseproud* part of me is still affronted.

More matters medical. Remember how Little Fish has been having bladder problems since April? It turns out that the appointment we cancelled for August did not get cancelled, and that we are now in trouble for having missed it. We missed the one before it, as the radiology department told us we need not attend. And the urodynamics test we've been waiting for since June, the one which is supposed to happen in a fortnight? There's no record of that on the system either. Back in April, I was told Little Fish would need to be regularly catheterised, starting very shortly. It is now September and no progress. I hope and pray we are not doing long term damage to her bladder here.

And I have a small child begging not just for biscuits and chips but also for bread and cheese. It is somehow much harder to resist a politely worded request for wholemeal bread and extra strong cheddar than it is to refuse the demand for a chocolate biscuit. I hope we can get some decent feeding therapy in place soon.

Little Fish has just started saying "I want to jump" "I want to walk" "I want to stand up tall". I can explain how her legs don't work, I can talk to her about her cool wheels and how good she is at nipping around in all her many chairs. It doesn't compensate, but it is something positive to mention. This whole wanting to walk and jump is not, incidentally, helped by the vast numbers of people who see that she has had surgery to her feet and assume that it is to help her walk. As a result, she now thinks this is the case herself. Thanks, world.

But, of the two, I can handle the "I want to jump" cries better than I can handle the "I want to eat" ones. Cuddles, bounces (gentle ones due to her brain malformations), rocking chairs, super deluxe wheelchairs and wheeled standers all help to compensate for that. And in general, people make "cool wheels" comments rather than "awwww such a shame" ones. "I would like a bit of bread and cheese, please" is not compensated for by "here you are darling, have some green sludge". Pink sludge doesn't help either, frankly. And comments from the rest of the world are less "cool food", more "ewwwwwww yuck" or "baby food".

Let's end on a positive. Mog is asleep, no chloral hydrate needed tonight. We're reducing one of her seizure meds and although it's only been one day, she seems to be having fewer seizures as a result. Tomorrow we'll be adding in a new anticonvulsant and who knows? This might be the one which actually takes them all away. It's unlikely, impossible, impractical. But every time we try a new drug there's a tiny flicker of hope that this might actually turn out to be The One. Of course there's also the possibility that it'll be The One to have totally unacceptable side effects and cause even more problems than she already has, but I said we'd end on a positive, so we'll ignore that.

Little Fish is asleep too, so I am going to copy them both.
Sweet dreams
Tia


*the houseproud part of me is very small indeed. Big enough to be affronted by things like this, not big enough to pick up the HAMA beads Little Fish scattered so generously across the sitting room floor before going to bed, not big enough to wash up the supper things yet, and definitely not big enough to finish painting and decorating.

Sleep - surviving without it

Following on from the first sleep post, I'm sure I'm not the only one of us who has days and weeks and months and years when getting enough sleep simply isn't going to happen, no matter how many tips and tricks you put in place.

So, I thought I'd start a list of things I've found helpful when surviving on too little sleep. Not so much ways of increasing sleep (and have you noticed how searching for information on sleep is full of handy tips like "take a nap" or "go to bed earlier"? Simply not an option when you're sitting willing your child to keep breathing), but ways of functioning when sleep-deprived.

Please feel free to add your own suggestions - I'll take any and all I can get!

1. Write everything down - don't rely on memory.

2. Get into the habit of checking the diary regularly, and don't make appointments without it.

3. Slow the day down - don't plan too much in any one day.

4. Accept that getting ready for things will take longer.

5. Feel free to cancel evening events if they will cut into time which could be spent sleeping.

6. Try any or all of the tips here to get more sleep in the first place.

7. Cry lots.

8. Take the frustration out on random telesales people who shouldn't be phoning anyway.

9. Coffee is your friend.

10. Accept that people who have not experienced longterm sleep deprivation will not understand how tiring little things like sitting up and concentrating can be.

11. Try to find a driver - chauffeurs are the way forwards.

12. Grow interational friendships - I'm sure Trina and Laura would agree that having someone awake and on MSNwhen the rest of the local world is sleeping makes the midnight vigil easier.

13. On a related note, check the time before ringing more local friends - many people aren't awake and ready for convoluted conversations at six o'clock in the morning.

14. Pick a uncomfortable pew at church, and if they are all comfortable, ask a fried to poke you if your snoring is louder than the sermon.

15. Pray

That's 15 to yesterday's 50 - anyone got any more for me?
Tia

Sleep - getting more of it.

It seems as though a lot of us are having problems getting our children to sleep. I wrote a list for someone else, but thought it might be helpful here too. So, here are my tips for getting more sleep. I should mention that they don't all work, that there are times when none of them work, and that some of them might not be entirely serious!

Some of the things I've tried - feel free to ignore the lot, take any that are helpful, or be angry with me for suggesting all the things you've tried already!

1. Giving melatonin and chloral hydrate at max dose but both of them together and anything else I can combine it with just to break the cycle for one night.

2. Going at it from a pain and spasm angle and treating with painkillers and diazepam again to try to break the cycle.

3. Emergency seizure meds a bit earlier than might be called for (we are supposed to wait for 30 minutes of seizure activity before treating).

4. A video on a loop all night long.

5. Music CD on a loop all night long.

6. Television.

7. Settling in wheelchair instead of bed.

8. Wrapping up warmly and closing the door, sleeping with a pillow over my head to block the noise.

9. Getting cross and shouting lots.

10. Leaving child to sleep where they drop in the sitting room with a blanket over them instead of trying to get them into bed.

11. Bringing child into my bed and snuggling up with them all night.

12. Letting child sleep on a foam mat at the foot of my bed.

13. Sleeping in the child's bed with them.

14. Overnight respite of any kind - someone sleeping here whilst I go elsewhere, child going into social services respite, to fostercarers, to hospice, to grandparents so that I can sleep at night.

15. Sleeping (me) during the day so that I can be up with them all night.

16. Finding constant activities for the child all day long.

17. Setting child up with books and quiet toys and giving them a choice "I can't force you to sleep but you can't force me to be nice. You can either be quiet now and let me sleep, and then I'll be rested and ready to exciting things tomorrow, or you can be loud now and I'll be cross and grouchy all day tomorrow and we won't be doing anything at all"

18. Taking child to hospital to be checked out for hidden fractures or other causes of pain.

19. Speaking to my friends living in different time zones and crying to them about how desperate I am for sleep.

20. Inviting the sleep psych to have her ovenight since she doesn't appear to see the urgency for sleep.

21. Giving child antipsychotic meds (on advice and under supervision of psychiatrist) to try to even out the moods and break the screaming all night bit.

22. Other sleep meds.

23. Alcohol (for me, not the child).

24. Camping - a couple of my children have slept better in tents than in the house.

25. Getting even crosser and angrier and ready to destroy the child completely (and then scrubbing the kitchen floor or knitting or anything else using my hands to avoid touching the child)!

26. Giving the child massive doses of laxatives and enemas since the slightest hint of constipation used to send one of them completely high.

27. Birth control pills (for an adolescent with sleeping issues).

28. Melatonin for me in order to ignore the problem.

29. Rocking the child and comforting them all night long.

30. Rocking the child and comforting them after having given them a massive knock out dose of sleep meds so they stayed happy and drifted off instead of getting mad and fighting them off in bed.

31. Letting them scream.

32. Bribery (stay quiet all night and you can have chocolate for breakfast).

33. Cutting out all caffeine for the child after lunch (no chocolate as well as no coffee), giving them hot weetabix just before they go to sleep.

34. Adding in an overnight feed to prevent hunger.

35. Taking out an overnight feed to reduce reflux.

36. Angling the bed so the head is higher to reduce reflux.

37. Angling the bed so the feet are higher to help postural drainage and reduce choking on saliva.

38. wearing night splints

39. Abandoning night splints.

40. Crying to social services to get more help and respite.

41. Taking on extra children to dilute the intensity.

42. Reducing numbers of children to grow sanity.

43. Star charts.*

44. A memory foam mattress overlay.

45. Extra blankets.

46. Fleece blankets and sheepskin instead of sheets and pillowcases.

47. Aromatherapy "sleep" blends on the pillow.

48. Humidifyers.

49. Olbas Oil.

50. Prayer.

*Just to clarify after Alesha's comment, I mean behaviour modification charts where a child gets a sticker or a star on their chart for being good, I don't mean astrology!
Tia

Family reunited.

I started a long complaining post here, about the many and various ways in which the world was deliberately setting out to drive me crazy. And then Little Fish started singing "Tha-a-ank you Lord for this fine day" and spent the next 20 minutes finding different things to be thankful for with Mog's assistance. And I decided that maybe I didn't have so much to complain about after all.

Little Fish is happy. She has a new favourite item of clothing. Forget the coat, she's all about the accessories.
I must stitch a tie around it; for some reason the coat itself is beautifully lined with fuzzy stuff but the hat is lined with super-shiny lining fabric. Which ensures it slides off the head every couple of seconds. Fun for all the family.

Meanwhile, scary news! We have a stalker! All those urban legends about people breaking into your van, hiding behind your seat and then leaping up behind you when you are driving? They're true! Look what happened to me today!OK yes, it is a balloon. But trust me, when you glance over your shoulder to check the girls traffic, and when it is getting dark, a balloon is not what it looks like!*

Mog's home again. It is nice to be a threesome again. Lovely to have individual time with either girl, but there's a certain dynamic which gets missed whenever there's a girl missing. I hope she's pleased to be home, at the moment she's tired. Now both girls are sleeping and I feel the need to follow suit.
Night,
Tia

*and you can take the daylight in this photo as proof that I safely recreated the experience for photographic purposes rather than click the camera over my shoulder as I drove home. Oh, and it is tied down too. Drive safely girls and boys. And always brush your teeth.