Life

It's a busy week this week, with firm immovable commitments towards the end of the week (including my brother's wedding up in Scotland, lovely, but a long drive).

Mog was off school all last week. She made it back for the grand total of one hour yesterday, and it has been decided that she should stay off for the rest of the week now. Hopefully she'll be more herself by the weekend.

Little Fish has a horrible rash surrounding her stoma again - it has been swabbed, we have co-amoxiclav on the way pending swab results. Hopefully this will help, certainly it will give her spectacularly loose bowels in the meantime. That'll be fun for preschool. And for the journey up to Scotland. She also has conjunctivitis again, but cannot use her backup ventilator mask as she screams until she is sick. Hmmm, conjunctivitis and a decent night's oxygenated sleep, or no conjunctivitis and a child aspirating vomit whilst wearing the mask, or not wearing the mask and simply not breathing for extended intervals throughout the night? We've got chloramphenicol and hopefully the conjunctivitis will go away.

Both girls have horrific nappy rash again and we have a new whizzy super cream wending its way from the pharmacist - antibacterial and antifungal. Oral fungicide too for one girl.

Anyone seeing the girls for the first time with all their different ways of falling apart would seriously consider placing them on the child protection register. I've seen ammonia burns on children who have been left in rancid nappies for hours (days?) on end, and the girls' rear ends look similar. Add in some pressure sores, dribble rash, persistent infections and I start to doubt myself even - it certainly wouldn't look great from the outside.

Mog hasn't slept in her bed for three nights now and won't tonight either - she can't lie down at the moment, even propped up, so is sleeping in her comfy armchair. It is comfortable, it does have pressure relief built into it, and it is better for her to sleep sitting up in a posturally correct position with an open airway than to spend the night drowning in her own dribble. But as a result her bed has a neglected air to it - more evidence for those phantom child protection staff I picture behind my shoulder. It is at times like these that I am so grateful for our carers, who come in six days a week and could, if necessary, confirm that I do in fact look after the girls perhaps not perfectly but certainly in a more than adequate fashion.

Just to make life even more entertaining, my internet connection has decided to start playing up. Thinking it was the ADSL cable, I took the girls on a mission to find a replacement. Whilst I am willing to accept as a hypothesis the theory that all retail staff are incompetent idiots, I suspect that when every single member of staff I meet in every single one of the shops we enter is acting the idiot, well, possibly, the problem is not with the staff but with myself. It is definitely time to stop trying to shop when the slowness of the staff at the checkout makes you incandescent with rage.

Come home with both girls, large quantities of chocolate, and a new line and filter. Picked up the modem to discover all buttons twinkling merrily, internet service has been resumed. Decide that not only all staff in all electrical shops but also all people working on internet provision and in telecommunications generally are evil and working to one purpose, namely to drive me even more insane. Realise, once again, that if the entire world has the problem, it is probably my issue not theirs.

Plug the computer into the modem and the girls into Telletubbies. Read emails. And breathe.

In writing this my connection has dropped at least twice, so there's definitely some problem somewhere - if I disappear then I haven't dropped off the face of the earth, just off the internet. And whilst the thought of dealing with the real world without a virtual one at my fingertips is scary, it's possibly less scary than the prospect of actually dropping off the face of the real world.

I may be back.
I may also be extremely tired, which is probably why much of this makes no sense.
Tia

PS And because life is rarely all bad, or all sad, a little Little Fish-ism - Sitting quietly in her chair looking very seriously at her packet of chocolate buttons. "Mumma, this chocolate is not working". It was empty. A girl after my own heart.