Thursday, 28 April 2011

Dear World...

Dear keyboard. I know the Little Princess spilt a yoghurty squidge all over you and then tried to clean you with a cup of water. I realise this wasn`t the wisest plan. But most of you recovered. Could you please, please, consider giving me back the delete key and apostrophe? I really do use them quite a bit...

Dear random visitors to my house. Kindly stop putting my butter back in the fridge. It is my house, my butter, I like it soft. Thank you.

Dear carers. Once again, may I remind you that the toilet seat is not a suitable spot to dump Mog`s feed pump. Not even if the lid is down, not even if the feed has finished. It is however a more suitable spot to dump a soiled pad, if you are having difficulty reaching the pad bin.

Dear builders. Thank you. It is a truly beautiful bathroom, and I love it. It would however have been even more beautiful - and slightly more easily usable - if you had listened to my concerns about whether the shower bench would fit over the newly boxed in pipes, and how there was a reason why the shower head had been installed on the other wall in the past.

Dear Tesco. Thank you for your ridiculously cheap school uniforms. But I ordered six, not five. And I did in fact expect all of them to come with the correct number of buttons, all fastened to the dresses in the correct spots.

Dear `young men in hoodies, one grey, one purple` who have now stolen my milk once and my side orders three mornings in a row (as witnessed by my neighbour). I hope you actually need the milk. I realise you didn`t like the Hot Cross Buns, but sticking a hole in them then scattering them around the car park was just annoying. We actually have plenty of milk at the moment, so if you must steal something tomorrow morning, could you please take the milk and leave the cranberry juice? My daughter actually needs that for medical reasons, and I am pretty sure her need is greater than yours.

Dear life. Could you slow down a little please, and not throw anything more at the Little Princess just yet? She has had about as much as she can take, and we really do not need any more wobbles.

Dear LP. I know, I KNOW! You have told me 6542765 times now, most of that in the last three hours. Which is particularly irritating, as you begged to go to bed from around four o`clock. Please, settle.

Dear Mog. Yes, we all love your tiara. Shame it actually belongs to another child in your class though. We will send it back in on Tuesday.

Dear Wills and Kate. Wishing you all the best in your years ahead, but, well, should you decide to repeat the process at any time, could you consider celebrating by giving children an extra day in school, not by taking them out when we have only just got them back in again?

Dear K. Chocolate and Almond Torte.
Grease and line a 9 inch loose bottomed cake tin. Melt 8 oz dark choc (or, in my case, 6 oz dark chocolate and 2 oz leftover mini Easter eggs) with 3 tbsp water over low heat. Add 5 1/2 oz soft brown sugar and stir until dissolved. Remove from heat. Stir in 6 oz butter a little at a time until all mixed in. Add 1 oz almonds and 3 tbsp self-raising flour. Separate 5 eggs. Add the yolks one at a time and beat until absorbed. Whisk egg whites into soft peaks. Fold into chocolate mixture with metal spoon. Add 3 1/5 oz finely chopped blanched almonds (or, in my case, another 3 oz ground almonds). Stir.

Pour into cake pan and bake for 40-45 mins at 180 degrees C until well risen and slightly cracked on the top. Leave to cool in pan for 30-40 minutes. Recipe says to turn it out after that but I chickened out. Yum.

Dear C. Take one lump of pizza dough and spread it onto a tray. thin covering of oil. Mozarella over that, then asparagus (shaved into ribbons using potato peeler). Black pepper, then boursin. Bake at 220C for 15-20 mins. Also yum - and was serving one just as your text came through. Original recipe over at the Pioneer Woman`s Tasty Kitchen Blog.

Dear Bath. It has been far too long since the builders removed your predecessor. I have missed you.

Tia

Friday, 22 April 2011

Wednesday, 20 April 2011

New Mask


Pros.
  • It has a good seal.
  • No pressure in bad places.
  • It seems quieter than the others.
  • Very quick release catch for when she's being sick.
Cons.
  • She hates it.
  • It fills her tummy with air.
  • It makes her sick.
  • Condensation from the humidifier means she can't see out.
  • She can't suck her thumb.
  • Her shouting is muffled so I can't always hear her calling for me.*
  • She hates it.
It's been a week now. Screaming (muffled), retching, begging and pleading, holding my nightie hostage so I have to come and take the mask off when I go to bed myself. We've tried the "wear it until I go to bed and then I'll take it off" and the "Go to sleep without it and I'll put it on when I go to bed" and the "JUST WEAR IT AND BE QUIET AND DON'T EVEN THINK ABOUT BEING SICK" option (surprisingly effective but not to be recommended I think). Last night I went out. Huge upset as I was going, so I took her mask off and told her I'd put it back when I came back. Four hours later, as I walked through the front door, she called out to me. And, instead of the peaceful sleep the sitter (and I) had assumed she was having, she had bundled herself face down into the far corner of the bed, burrowing under the bed sides and nearly suffocating herself (as well as pulling out sundry other overnight bits of tubing) in her panicked attempts to avoid wearing the mask. I gave her the night off, and big silent tears rolled down her face as she clamped down firmly on her thumb once more and settled into a nervous and disturbed sleep.

So, tonight I decided we'd give it a go, but give up at the first vomit or scream. Mild battles at bedtime are one thing, but having a child afraid to go to sleep is another entirely. And I put it on, and she told me she was going to be sick, and then decided she just had tummy bubbles, so I vented her. And ten minutes later I vented her again, and we counted all the things I need to do before I go to bed myself. She selected a mildly squishy toy to cuddle up to to compensate for the thumb. And then she went to sleep. Wearing the mask, with no more argument.

It may, of course, have had something to do with the fact she lost a tooth this afternoon. And "Mummy, when I am asleep will you be the tooth fairy for me please?" She does have a couple more wobbly ones, but I don't think knocking a tooth out every day is necessarily the way forwards.

Tia

*Actually, this one could be a pro.

Monday, 18 April 2011

Interval



A second chest infection - thankfully over quickly, but with some worrying interesting new symptoms. A second GA, a hated new night time regime, far too much vomiting for any child to live with, a bladder full of nasties, a garden full of bits of bathroom, and a house full of builders. And a missing camera cable. Night feeds, night wees, night time niggles and not enough coffee.

And

An extra weekend of respite offered by the hospice, some unexpected respite nursing and the promise of a new and cat-proof pressure relieving mattress; the joy of seeing my brother and family after an 18 month absence, a general gathering of the clans (although sadly but understandably incomplete); a shiny new fully functional wetroom and rather jolly lovely bathroom well on its way; some very gorgeous cuddles with a cousin's baby; watching Grannie playing cricket and cousins renewing relationships; beautiful weather; and the realisation that we are just about halfway through the Easter holidays and haven't yet had the "what on Earth are we going to do now" panic when it's 9.30AM and the day's activities are already complete.

And breathe.

And, the chance to try out a super duper fancy whizzy wonderful wheelchair which goes down to the floor and up to the sky and sits and stands and would generally make the Little Princess far more able to just be a part of life as a six year old. And a £20,000 quote for that same wheelchair which, oddly enough, isn't a sum I have just lying around under a mattress somewhere. Especially not after nice new shiny independence-enabling wet room. Time to start thinking about some fundraising.

And, speaking of fundraising; here's a challenge. I don't know about you, but once I was old enough to go to school, my parents found me a place, found me some uniform and whatever else I needed, and supported me for the next thirteen years until I'd collected a few A levels. My Mog started school (on a very part time basis) once she was two, and LP is now very happy at my old school. It's not quite the same story for Sarah's children in India. Sarah sent me this letter yesterday, and I'm passing it on.

Hi Friends of SCH!

If you're receiving this letter, it's probably because you love our vision for rescuing abandoned, institutionalized, and neglected kids with special needs and giving them everything--tons of kisses, lots of prayer, corrective surgeries, nice clothing and toys, physiotherapy, and everything that a much-loved child born or adopted into one of our families would get. We want to be the next best thing to an adoptive family, and you've helped us to be that. Our children are so happy because they're deeply loved and they know it. Almost all visitors remark that they've never seen such happy kids in an orphanage.

Part of giving them everything we can is making sure they have the best education available in Ongole. Being able to do this for them really excites me. These kids have been educationally neglected and are behind in many ways, and they need quality education to help them to not only catch up, but to get ahead. NONE of the 82 children in our care were sent to any type of school while in government care, but now 16 of them attend the best private, English-language schools we could get them into. Next year, starting in June, we'll be sending 21 children to top schools.

In India, competition for jobs is fierce, and if our children as orphans with special needs are going to compete, they've got to start preparing early. To get a good job, a child needs a private English education--without one, he or she can not get into a good college and will not get a good job. The free government schools are pathetic--often the children wander around, teachers rarely show up, and five or six grades are shoved into a classroom. Our children would be lost in the government school system.

We love it that we've been able to get so many of our children into good schools. Can you help us afford their education next year? It costs around $500 on average for one child to attend school for a full year, including tuition, fees, transportation, books, uniforms, shoes, backpack, water bottle, etc. When I sent my 3-year-old to a Christian preschool in America for 3 days a week ten years ago, I paid $330 a MONTH for tuition alone. My friend's brother in China will have to pay $50,000 to send his twin kindergarten daughters to an international day school in Beijing for a year. In comparison, the best education we can obtain for our SCH children is amazingly cheap, but the contrast between that and the free government schools is phenomenal. It would be a shame if we couldn't afford to do this for our kids.

And we may not be able to: I've raised only $200 toward this need in my several months of fundraising. We need $10,750 to send all 21 children to school next year. I can't imagine having to pull these kids out, when it's taken so much advocating to get them in.

Can you help? Can you sponsor a child or two? Maybe you can meet the whole need--a single donor did it last year...

Anyone feeling generous? These are Sarah's school children
and I know how hard she has worked to find schools who will take them. Here you can download a spreadsheet detailing the costs of each child's school placement, including uniform, transport, and all supplies. And here is Sarah's original post requesting help with school fees. Since she posted that in January, she has had just $200 donated towards these costs. The school year finishes in April. Without help, there will be no school for these children next year (new term begins in June). I can't imagine being in that position. Can anyone help? I see I have 59 followers. If every follower donated just £5, that would be one child's school costs paid for the year.

Tia

Wednesday, 6 April 2011

Beautiful

Big huge busy-ness over the past few days. Tediously complicated stuff, poorly children, and generally a bit too much of life.

And then I went to visit Mog at the hospice (where she is, for the second time in a month, being nursed through a chest infection), and was handed a CD. They have a photographer who comes and gives her time, taking photos like these and giving them to the parents.

And somehow the grimness of the underground rooms in the hospital and the worry of two under-par children in two separate places was swapped for an appreciation of how wonderful they are.




Don't you agree?
Tia

Sunday, 3 April 2011

A Birthday Princess

Three hours before the party.
Three hours after the party, all quiet in the house, with utterly exhausted children sleeping the sleep of the exhausted child.

17 small children, thankfully several spare parents, too much food, too many balloons and a good time was had by all except the little one who stood in a corner sucking her thumb. Only two sets of tears, and only three who refused to do anything at all - and even they agreed to sit down for the food.

We survived, no one died, and if we can teach her to swim in the next twelve months perhaps next time it can be a pool party. Or pizza. Or something involving fewer children and someone else in charge of entertainment!

Today, the aftermath. One small princess weeping and begging for a back rub, guiding my hand to her "hump"and asking me to push it gently. Not great, but laying the groundwork at least for the beginnings of conversations about how one of her doctors is thinking about maybe straightening it out one day with an operation.

And one larger princess who suddenly went very cold and shaky whilst enjoying a nice cuddle. I put her to bed and took her temperature before piling her with blankets - 38.8. Forget the blankets, strip her down, calpol and brufen and half an hour later even hotter, and with a heartrate of 180 to add interest to the proceedings. She then decided to get very warm, bright pink all over, so I took her temperature wondering how high the thermometer records - and despite burning up, she was now at 35.9. So we spent the rest of the afternoon alternating backrubs for one child with attempting to find a respectable compromise for the other, as she proceeded to cycle between the two extremes with the occasional bout of seizures in case we got bored. Gave up in the end, stuck her on her CPAP and she turned her head around, smiled and went to sleep. Much happier and much calmer. I'll try that earlier next time.

One Little Princess sleeping sweetly without her Nippy as it's marking her face = one strangely silent household. Larger one in Helen House from tomorrow, lesser one having Botox on Tuesday, could be an interesting week.
Tia

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