Behind The Child: A Day in my Life

It's the 14th again, and visiting Little Jenny Wren's site reminds me that it is time for A Day In My Life.

I had another couple of posts mulling about but I shall shelve them for now and blog our day for you.

We started with an inadvertent lie-in; for some reason my phone was on silent so instead of being woken by the alarm I was woken by the carer ~~hammering~~ gently tapping on the front door to be let in.

I ~~dragged my weary body~~ tiptoed gently to the door to let her in, then retreated to get dressed myself as she gathered clothes for Mog. Mog meanwhile was sleeping peacefully, so peacefully that I had to check for myself she was actually breathing. She was. Beautifully, calmly, silently, without struggling. So we mutually agreed to leave her to sleep, and our carer instead helped Little Fish with her breakfast and then into her clothes. I fought the urge to go back to bed and entertained the carer by insisting on two spoons of coffee in my mug.

Mog did wake up before the carer left, so we threw some clothes onto her too, having made the decision that she would not be going to school today.

An almost peaceful hour followed; Mog went back to sleep, I washed my hair, and Little Fish asked me what I was doing about six hundred billion times, and then asked me why six hundred billion and one plus infinity times.

And then we loaded up the bus and headed off to hospital for an outpatients appointment. Yesterday, different hospital, Little Fish and I ended up parking on a muddy verge as no spots left in the carpark. Today, no spaces in the disabled parking zone, no spaces in the children's hospital carpark, but thankfully only a fifteen minute wait to grab a space in the neuro carpark, and only a 1 minute indoor walk between that and the children's hospital.

Up in the lift "maybe we might be having time to play, Mumma?" and much to Little Fish's pleasure, the clinic was running late enough that we were nicely in time for her to ignore all the toys and insist on being bounced on my lap holding half an old telephone set.

And then a weigh-in - by the same nurse who weighed her yesterday at the orthopaedic hospital - and then finally time to see the paediatrician.

Yesterday one of the doctors looking at Little Fish listened extra hard to her chest, and got that look on her face. You know the one; it starts with a "mm hmmm" and moves to a "wait what?" and then goes on to a "hmmmm don't remember reading THIS in her notes" and then a panicked "oh what do I say to the parent, she's sitting right here watching me, must be reassuring, oh too late she knows something's wrong now right here goes." And then with a bright, caring, smile, the doctor said "Has anyone told you she has a heart murmur?"

No. No one has thought to mention that before. Actually, I'm pretty sure no one has picked this up before; it is the sort of thing which would be listed on adoption medical papers and it wasn't. And given the number of people involved with Little Fish's medical bits and pieces, the fact that it has never been mentioned quite possibly means that it wasn't there before. Or that everyone assumed someone else was doing something about it.

So, today the paed had a good listen for himself. He listened to different parts of the heart from different positions on LF's chest with LF's arms and body in different positions. And then had a bit of a "Hmmm" himself. The good news is, he isn't really worried, and apparently if Little Fish were an ordinary child her age he would just want to monitor it periodically with the expectation that she would grow out of it by the age of 5 or so. But of course Little Fish is not an ordinary child, and her body doesn't work in the same way as other children's do, and in addition she is now waiting for major surgery. So he has referred her to a cardiologist. Ho hum.

This means that between the two girls, we now see two neurologists, one neurosurgeon, two respiratory doctors, one orthopaedic surgeon and one spinal consultant, one urology consultant, one general surgeon, and are now awaiting appointments with one ENT consultant and one cardiologist. Add in all the many nurses and thank goodness we don't need to keep seeing all the social workers too!

So, appointment over, we have time for a quick bite of lunch in the atrium before heading back towards home.

For some reason, it wasn't popular this lunch time. Someone had beaten us to all the chocolate and almond pastries, perhaps everyone else shares my opinion that nothing else is worth eating from there.

Little Fish did not share my opinion, and enjoyed a sandwich in her chewer.

This is a clever little device with a hardy mesh bag attached to a tough plastic handle. All finger foods can be put into the bag, and she can then suck and chew to create her own purees. It isn't pretty to watch, but it is excellent feeding therapy, and she prefers it to having to eat cold mush everywhere we go. Hopefully by the time she is old enough to be embarrassed about needing it she will have made enough strides with her therapy to be eating ordinary food again.

Mog and I then dropped Little Fish at preschool, and walked out, her wails echoing down the corridors once more. I wish I knew what this was all about. She was absolutely fine about being left last term. After Goldie's inquest she was quite upset and feeling a little insecure, but she seemed to have settled down into school and preschool again a bit more before the end of term. And now she is worried all morning about the prospect of having to go. "I not go, Mumma, I too tired" "I too sad, I a bit hurty" "Maybe you and me stay here together, Mumma?" I know she isn't of statutory school age, I could take her out of both settings and keep her at home with me. I know too that I could go and stay with her in both places. But, 30 seconds after I have gone she is perfectly happy - not just resigned to her fate, but happy. And when I pick her up she's delighted to see me but again not superclingy and overwhelmed, just pleased I am back. So I really don't know what's going on there.

However, having waited until I could hear her being happy again, Mog and I came home and snuggled up together to watch her copy of "The King and I". Mog evidently felt it was quite relaxing.

And then it was time for a cold walk back to preschool to collect our Little Fish.

Back home again, and time for our speech therapist to visit, bringing with her an assistant who is going to carry out a feeding therapy programme for Little Fish for the next six weeks. Lots of blowing bubbles, making faces, and licking chocolate spread off her lips, and then time for them to go and for us to think about tea and pyjamas and bed.

And so they did, and so we did, and then Little Fish was settled . And then I had some food, and Mog had some music, and now Mog is also settled in her chair