Wednesday, 1 October 2008


I like being on time. Pre-children, if I needed to be anywhere at a certain time, you could guarantee that I would arrive early enough to be sitting in the car around the corner waiting until it wasn't too embarrassingly early to turn up. With one child, I managed to keep that up, most of the time, although sometimes only by the skin of my teeth. With two children that started to fall apart, and by the time there were three, forget it. By the time 2 were ready the 3rd would be needing attention, and by the time the third had been sorted out the first would be needing something again.

Today though I think we reached an all time low. I was enthusiastic about Little Fish's post-op checkup. We waved Mog off to school, I scraped most of the weetabix out of Little Fish's hair and off my jeans and loaded up the van. I had my diary, my handbag, my purse, Little Fish's feeding supplies, and two spare nappies. I took the time before we left to empty everything extra out of my handbag - including, for some reason, a small pile of unopened post. No idea how that got there. It was looking good. We had a smooth trip to the hospital, no heavy traffic, no unexplained roadworks or random traffic surveys. We even found a parking spot, and had time for a cup of coffee before heading to outpatients.

Or so I thought.

The first sign was when the receptionist failed to find any record of our appointment. The next was when she asked me to tell her today's date. Yes folks, we managed to turn up an entire 24 hours late. Ooops.

Thankfully, instead of sending us away, they did agree that Little Fish's casts should come off, and that someone should take a look at her. This did however mean sitting in a crowded waiting room until they could slot us into a clinic. Joy. I'm not sure what the planned clinic was; it definitely wasn't a post op clinic and there were several sets of twin babies. Very cute.

Little Fish needed a cuddle; I plucked her out of the chair and realised she was sitting in a puddle of wee. Lovely. Grabbed my bag and headed to to loo. No changing bench. No choice; I lie her on the floor (which does at least look clean), noticing as I do so that her dress has rather handily been rucked up around her waist, not so comfortable for her but at least it's not wet. This is good, as it turns out I have forgotten to pack a change of clothing for her. I strip off her nappy and ferret in my bag for the replacement. I find a large packet of junk mail, and realise I've left the spare nappies on the hall table. Excellent. Meanwhile, Little Fish takes this opportunity to urinate copiously, flooding the floor and her dress. Mildly panicked by this time, I rustled frantically through my bag, willing something, anything, to turn up. I should perhaps mention at this point that having dressed rather rapidly this morning due to the unexpected entrance of a new carer shadowing our existing one, I am wearing a hooded sweatshirt but no t-shirt underneath. So giving her my T-shirt and pretending it's a cool new baggy dress is not an option either.

I unearth a largish bib and assorted tissues. Little Fish's cardigan has escaped the deluge, so I strip her off, and cover her top half with the cardigan. Rinsing the dress out under the tap, and cursing the fact that this is the first loo we've been to in months which has paper towels instead of a hot air blower, I place it around her waist, attempting to contain the sogginess in a layer in the middle whilst keeping a nice dry bit at the top which therefore almost looks as though she's wearing decent clothing. This deception would be more effective if Little Fish didn't keep plucking it off, waving it around the waiting room and shouting "I wee on my dress". Thanks, kid.

We head to the little shop in the hope that it might have some kind of babygro or possibly even a nice soft fluffy towel. We come back with a flannel and two bars of chocolate. The flannel lines the wet dress nicely, and the chocolate keeps Little Fish's fingers busily occupied.

So, fast forwards a couple of hours, skipping over the "No STOP NOT over my feet, not over his feet, STAY STILL IN YOUR CHAIR" bits and avoiding the bribery by chocolate bar, we come to the appointment itself. Mr T took a look at Little Fish's legs, and divined, through the casts, that the op had been successful. Impressive. He must have some kind of super x-ray vision thing. We then talked about her forthcoming hip op. "Oh, did I say she needed surgery?" he asked. Once that was cleared up he confirmed that she did, indeed, need major reconstructive surgery to her hip, it would indeed be the same operation that nearly killed Mog last year, and it will probably happen before Christmas (I'll belive that part of it when I actually turn up at hospital and not before though). So glad I asked.

On to physiotherapy, where they were able to cut off her plastercasts, tidy them up, wipe the fish food out of her toes, and fit them with straps to be worn as AFOs for the next fortnight. Nice clean wounds neatly healing but a bit of interesting puffiness about the ankles. Oh, and a pressure sore on her heel again.

Over to orthotics next where LF was cast for her new groovy AFOs. Lots of different designs to choose from. Here she is trying to unscrew them all from the board in order to scatter them across the floor of the plaster room. Didn't work.
So, with all those designs to choose from, which did Little Fish fancy? This is a design which will cover her AFOs - AFOs for those not in the know are little splints which will run from her toes to the backs of her knees to keep her ankles in a good position and hopefully prevent the need for further surgery. They aren't subtle creations, they are highly visible, especially when you have a child who likes to wear skirts and dresses.

Bearing that in mind, one of the subtler designs might perhaps be welcomed. Or perhaps make them a design statement, they aren't ever going to be invisible, so go for something which shouts its existence?

It's not a very clear photo. The bottom row has camoflage, denim, and pretty flowers and butterflies. Middle row groovy girls, diggers and lorries, zoo animals. Top row rainbow swirls, planets. footballs. Perched on top of that a new design - thumbprint bunnies.

Little Fish was absolutely determined what she wanted to choose. We offered her several opportunities to change her mind. The orthotist was almost begging her to reconsider, or alternatively for me to override her decision. Sadly, she's the one who has to wear them so therefore she is the one who gets to choose the design.

I'm assuming that by now you're getting the impression it wasn't one of the sweetly pretty girly designs. So, rainbow swirls? Camoflage? Nope, Little Fish, my little girl, has decided that the only design for her is the diggers and lorries. I think it might be the "no dogs" traffic signs which sold her. That or she thinks it's going to impress her boy friends. At least it wasn't the footballs!

We took so long at the orthopaedic hospital that we had no time to get home before our next appointment. So we swung past Mothercare where we failed to get nappies but managed to pick up a new dress, Boots for the nappies (making Boots apparently the only shop selling size 6 nappies in nappy style rather than pull-ups, worrying), and finally Burger King for a quick lunch. Since Little Fish has been banned from chewing (she failed a swallow study fairly spectacularly), it can be tricky to get proper food for her when out and about. We have some nice mesh bag teething devices which are clearly designed for healthy bouncy babies. I'm certain the intention is to insert strips of organic mango and melon into the bag, to let Baby enjoy the fullness of the flavour without any of the fibre. We stuff them full of burger and chips. It was Aberdeen Angus burger, does that make it any better?

On to school for Mog's wheelchair appointment. A new back, and a new headrest tried and failed. A big "Hmmm" about the headrest and a recognition that Mog appears to have lost the ability to turn her head from side to side now. She can't use the headswitch for her communicator any more, and can't keep her head in midline by herself. However, she also can't use a sculpted headrest as her seizures slam her head sideways, and a sculpted rest or a neck collar could damage her. Our wheelchair service like a challenge; they've gone off to consider the options, and meanwhile, Mog needs to not spend so much time sitting upright. This could be interesting - can't lie down as she drowns in her dribble, can't sit up as her head falls over.

A quick visit to nursery where Little Fish interrupted the afternoon to play with one of her little friends. It's lovely to see her form friendships, and was great to see them both so excited to see each other unexpectedly. Less good was the tantrum Little Fish threw before we got to nursery, refusing to go home until she had seen him!

Home finally and in time to greet Mog from the bus. As we wheeled Mog in through the door she had a nice fruity cough. Oodles of bright green phlegm pouring out of her. A quick phone to the surgery, a doctor's appointment 20 minutes later, and we are now home with a bottle of antibiotics and the knowledge that she has another chest infection. Strange as her symptoms have been totally different this time - no high temperature, no coughing really, just a bit flat during the day and the whole evening miseries. But she usually has a nice right sided aspiration pneumonia, apparently this one is upper left instead so I suppose it makes sense for it to have different symptoms. Different antibiotics too, so I hope these ones will sort things out. And not make the nappy rash worse.

And now I have two girls in the kitchen; Little Fish is demanding dinner and Mog is laughing at her. I had better go and see to the pair of them.


Sandy said...

ah Heathers first splints were thumbprint bunnies .. they were so cute .. of course she grew up and gets to choose too now so we have pink groovy chicks with bright red straps ! .. hideous with red uniform!

Sorry about lateness and wetness .. i hate it when that happens .. it has always happened to me .. having never been efficient like you its easier to bear !

sending love to mog hope she better soon

Sandy xx

Alesha said...

so the mystery with Mog is solved. Sorry she is sick and obviously not feeling well.

We were 24 hours late for an appt. once, too!!! It was so embarrassing, but you have to laugh! What else are you going to do?

And I'm sure LF will be a big hit with her dafos! So cute!

I hope your night is peaceful!

Michelle said...

Mog sounds so much like Emily who also drowns in her secretions and can't hold her head up. We tilt Emily's chair back part way, and have very soft cushy wings on her headrest. She also seizes to the side. Emily was born curved in a C and tends to face that way. I thought the back surgery would change it, but not to be.

Anonymous said...

I used to be the very early one to anything scheduled and well remember sitting in the car so not to be embarassingly early many times. Now I have the opposite problem. It was worse with three. Not much of a problem with two. I too am surprised when finding a stack of letters in a bundle that I have not gone through. Just too many things to remember.
Hope Mog is on the mend soon and the nappy rash isn't too bad.

Claire said...

Could pretty legwarmers or socks over the AFOs be the answer? I have to congratulate LF for refusing to conform to gender stereotypes, well done!

Anonymous said...

Certainly your life is anything but boring! But you wish for a slow down every once in a while.
Love reading about the happenings of LF and Mog--
Hope Mog is feeling better soon


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