Rewind time a few weeks, and I have a conversation with Hazel, who will be in the area and would like to meet up for lunch if possible. That's great; it will have to be an earlyish lunch and I'll have to kick her out when the sitter comes, but still lovely to see her again*.
On Thursday I get a message from Mog's other family, can they call in on Friday morning to see her. So that's meeting at 2.15, leave here at 1.30, Hazel and Joni here before that, Mog's Mum and little sister here before that. Busy but doable.
Until, early on Friday morning it becomes apparent that I cannot get Mog's temperature down properly, and that, since she has had a temperature and discomfort for about ten days now, she probably ought to get to a doctor of some kind before the weekend. If we hadn't been at hospital all week, I'd have taken her earlier (how ridiculous does that sound? I can't get my child to see her doctor because we're in hospital?), but Friday she wakes early spluttering and struggling to breathe as well; definitely time to sort things out for her.
I phone the surgery and have an appointment for 10.40. Sort things out with Mog's other family who will now come to see her before we leave, and
Mog's Mum and sister arrive just as Little Fish wakes up (a week of assessments and she sleeps in until 9.30, wonderful!). Rather sweetly, little sister has brought a doctor's kit to help Mog get better. It turns out that Mog's reflexes are working just fine, especially if you hit her knees repeatedly with a hammer. Little Fish rouses herself enough to grab the toy phone, and the three girls have a nice time all doing their own thing but nearly playing together.
Out of the door and into town to get to the doctor. Very nice doctor, not one we've met before, who listened to my concerns, checked that I was happy with his actions, offered to have us admitted to hospital but was equally happy for us to wait it out at home, had a good look and a listen to Mog, and then found a lovely right sided lower lobe chest infection. Her old friend aspiration pneumonia strikes again. All the way through the examination he talked to both girls and to myself, did not once try to dismiss our concerns or overreact, was very clear about the things he didn't know and really made me feel skilled in my role as a parent. I wonder if he's read my letter?
Anyway, we left the surgery and headed for the chemist to pick up Mog's latest dose of antibiotics. It's been a few months since she last had any so that's quite good for her. I am sure that having a a suction machine has helped with this; being able to hoover up any grot she coughs before she reinhales it must be a good thing.
Home and unloaded with minutes to spare before Hazel and Joni arrive. Lovely to see big bouncy baby; Little Fish fascinated with "BOY!" who is equally fascinated with the wheels on her chair. Fair exchange I think - and they share a mutual fascination for grated cheese and bread crusts. One day I'm sure she'll get the hang of playing with other children rather than simply alongside them, but for now they were both happy and that's plenty good enough.
I change both girls after lunch and load them up with liquids and meds as appropriate. Hazel gathers Joni and baby bits, I try to collect my wits (and sadly fail), and leap into our bus ready to go. As I turn the ignition, I catch a familiar waft of poo, glance down and realise my thumb is less than perfectly clean. Running late now, I wipe it on
Meeting is at 2.15, amazingly I find a parking space at the hospital before The Archers finishes, so am officially not late. Hurrah. Oddly though, by the time I have run upstairs and into the community paeds office, everyone else is assembled and waiting for me. Ah well.
The meeting runs its course; Little Fish is officially deemed to have a working age of somewhere under 2 and a half - she is at the moment 3 years 3 months. Her IQ has been assessed at 71, which puts her right at the very bottom end of "normal". Various referrals are made on her behalf, reports are read, and we discuss her eating. Her paed is very worried about her eating skills and is not convinced that her new improved chewing abilities are safe or sensible. He would like her to have a repeat videofluoroscopy, and I get the distinct impression would prefer her not to eat at all. This is not going to happen - not unless we can keep Little Fish away from other children for the rest of her life. For now we will carry on as we are, going slowly and at her pace, offering her purees when she'll let us and letting her graze on soft chewy things when she won't, with named feeders in school settings. But no more drinking until after the next vfs. And we will
Home again, to an upset Little Fish - no, she hasn't read my mind and discovered that drinking has to stop again, she has managed to trip up on our ramp, tipping her wheelchair over on top of herself and cutting her face with her glasses. We've been waiting for her to do that for a long time - I do wish Bob would come back and finish his other ramp so that she would have a safe exit to the back garden.
*and as a handy benefit, she happens to be living at the moment fairly close to the ebay seller of a fibre optic curtain, and will collect it for me, hurrah!