Nine.

(Princess Mog all dressed up for the Royal Wedding)

Nine years ago, a little baby was born. Shortly after her birth, she started having seizures.

Today, Mog decided to celebrate her birthday by having another big run of seizures.

The rest of us celebrated in a slightly nicer manner, with scones and cream and strawberries and raspberries fresh from the garden, chocolate brownies and cakes and lots of singing and chatting.

Mog slept off the Midazolam - rather too well.

But tomorrow when she wakes up, she'll have a large stack of new clothes to choose from, a stash of new music to listen to (and if anyone here was the sender of the "Glee" CD, please identify yourselves; contrary to the label in the bag, I know she didn't order it herself!), some beautiful fluffy pink lights to look at, and an assortment of cheques and gift vouchers to enjoy spending.

Meanwhile I'm thinking back. I wasn't at that original Birth Day, but I remember her First Birthday; a teeny tiny Tumbleform chair and some bells and mirrors, chocolate cake smiles, and wine for the grownups. A second birthday, in our new house; Vtech toys in her standing frame, and sunny smiles with hair finally long enough for bunches. A third birthday, a new baby sister, and lots of splashing around in the paddling pool.

I don't remember her fourth birthday. Did we go to her other parents, rather than them coming to us? I have a picture of her birthday cake and candles and cuddles, but was that another time?

Birthday number five, and an invitation to the whole nursery class to join us at home, jump in her ball pool, check out her sensory lights, play with her new fountain in the garden. Bouncing classmates and guitar playing teacher, and all good fun.

Her sixth Birthday had vanished too, until I checked back through the blog - proof that keeping this record is useful to me if to no one else. A big, multiple day event, with Birthday breakfasts and days out, making a Rainbow promise and going to the circus.

A change of venue for her seventh Birthday; a week in Tenby with the Harriet Davis Trust. The Little Princess had just had surgery that time too.

And last year, big plans made small when Mog's ability to sit up shrank (thankfully temporarily, although it was a very long temporary), and a day in France exchanged for the great kite flying adventure.

So now Mog is nine, and definitely not little any more. And the combination of new medication and a new wheelchair have taken away most of last years' miseries. New needs have inevitably arisen to replace them, but she continues to make her feelings known, to surprise those around her at times with her opinions on life, and to add that little extra bit of interest whenever she possibly can.

At nine, Mog is a Brownie, and very proud to be one.
Mog goes to school, and has managed to increase her attendance rate from 40% to 60%. I think this past month's absence may be doing something to lower that again though.
Mog goes to Godzone at church, and comes home with drawings she has done herself, and craft projects she's had a little more help with. She is usually keen to go, and enjoys joining in the worship.
Mog is using a switch and a talking book in order to communicate her needs and wishes, and enjoys having something to tell us all. She's finally decided it is in her own interests to demonstrate her yes/no responses on request, and as a result, she can talk to people who have only met her once.
Mog has wild brown hair which has still never met a pair of scissors, and she still enjoys having it primped and played with. She has a huge wardrobe, and manages to look good in just about everything in it.
Since having her bar chimes for Christmas, Mog is increasingly using her right arm again to make them jingle (or, preferably, to push them over and make them crash. On second thoughts, perhaps she really hates hearing them jingle).
Mog is, once again, throwing new health issues at us, ensuring that she stayed the primary focus at her Birthday Tea, even if for all the wrong reasons.
Mog is a part of the local community, never short of people who will come over and say hello, surrounded by friends and family who enjoy having her around.
Mog is loved.
Tia

Skwirrelling about

When the spinal surgeon said that the Little Princess would probably stay very short, he dismissed our concerns over this by mentioning the possibility of a powered chair with a seat raiser.

When the next surgeon mentioned that tLP's arms might get weaker, and that she might have more difficulty propelling her manual chair, we decided to look for a chair which had the ability to go down low and fit properly under primary school sized tables.

And we found three options. The K450 MX from Permobil, the SnapDragon from Dragon Mobility, and the Skwirrel, supplied in this country by Joncare. All slightly different, with very different price tags. Having taken a good look, we decided the Skwirrel was our best beastie; apart from anything else, Joncare are very local to us (so close, in fact, that the rep turns out to live at the house where our cats run off to when they have had enough of the food I offer them). There's a definite advantage to local suppliers. Apart from when they steal your cats. Oh, and, they promised us that the chair could be with us just 4 weeks after placing the order.

So, four weeks ago, we signed on the dotted line, had a very important consultation as to colour (it is supposed to look like a friend's Mini, but unfortunately Ice Blue wasn't on the RAL chart), did some measurements, and handed over a large wodge of cash for a deposit.

I then spoke to Wheelchair Services, who had offered a pretty generous voucher towards it. They sent out the paperwork, giving me accidental kittens when the amount on the letter was for a manual rather than a powerchair, but correcting it quickly and paying Joncare their share by return of post. Hurrah for efficient practice.

And today was The Day. tLP woke up on top form and even consented to eat something for breakfast, in order to have enough energy for the Big Event. We drove round to Joncare, and were greeted with a large cardboard box, decorated with bows, ribbons, a special message to the Little Princess, and of course the signature Skwirrel.

Inside the box:

One rather stunning new wheelchair. The Little Princess decided to try to climb into it herself,

but was defeated, mainly through many of us telling her it wasn't quite ready yet, so took a brief break
before finally being lifted in and handed over ownership.



Note luggage rack for her sister's suction pump Very Important Things.

Most adjustments and tweaks and the inevitable sawing a couple of inches off the foot plates, and then we were free to head outside.
where tLP found herself temporarily interrupted again, as extra tweaks were made to the rather intelligent controller.

Finally, we handed over another large wodge of cash (well, a cheque, but it was a substantial cheque for all that), and were free to try to work out how to fit it into the van. Anyone know if Unwin make longer than standard front straps?

We cannibalised the spare rear straps and were off.

This afternoon, the Little Princess decided to take it for a walk.
I think it's going to take a little while for us to get used to front wheel drive (it's a bit like reversing whilst towing a trailer - turn left to go right, etc.), and a little while for her to get used to using her left hand rather than her right (the theory being this will free up her dominant hand to do all sorts of other things). And I know it'll take me a while to get used to walking the other side of her to hold hands.

But, she loves it. And, if at any time over the past two months, you had asked her why she needed a chair that goes up and down, she would tell you it was so that she could do this:
And now I can retire!

Tia

Whatever Happened to Mog?

Because, however much she might wish it, the world does not in fact revolve around the Little Princess. She exists, not in isolation, but as a part of a family, and a wider community. And, despite her fairly complex medical issues, those around her are used to thinking of her as the more straightforwards child. She is, after all, reasonably independent (and utterly determined), she talks, she eats, she goes to mainstream school. Oh yes, she also needs mechanical assistance to breathe, wee, drink, and other minor things like that, but on the whole we tend to think of her as the healthy one. Comparatively.

So discovering that she now needs brain surgery before she can have the spinal surgery she needs to have before she can have the op she actually wants - the one(s) that will give her independence in the loo wasn't exactly the best of news.

And, naturally, the priority is to get her through the op and early recovery, and she needs Mummy by her side for that. Which brings us back to the whole not existing in isolation thing. Much as tLP may think it, leaving Mog in a cupboard somewhere isn't really an option. Not for a whole week, anyway.

And here's where it gets good. Helen House was always going to be our first option; Mog knows the place, the staff know Mog, and I can relax knowing she is safe and under the eyes of the whole medical team there.

But the op was brought forwards, and the hospice is very busy, and whilst they could offer us four nights wrapping around the op, Mog was homeless after Friday.

And our amazing Community Nurse (with a bit of help from some of the more senior staff in various statutory bodies) arranged for Mog to go to our local Barnados/SS/NHS respite care home for the weekend.

And, my previous decisions not to investigate it as an option even when we were dropping with fatigue a year or so ago had to be overturned, and friends with equally complex children reassured me how well their daughters were cared for there, and thinking it was probably better than sticking her in tLP's cupboard, and remembering that it was virtually in the hospital grounds, I was happy for her to go.

And then the op date was brought forwards even more, and instead of Mog being in HH two nights before the surgery, suddenly her stay did not begin until the day itself. And Mog decided to celebrate the news by starting a chest infection, with the interesting refinement of needing oxygen after around 3.30pm.

So here's where friends stepped in, with one friend giving up a Monday to come and care for Mog, and another racing back from work and swapping vehicles to taxi Mog and Grannie to the hospice, ensuring Mog was always with someone competent to suction (which is, as a rule, the best way to ensure she doesn't need it).

And friends stepped in again, to ferry Mog from hospice to hospital, with more friends bringing food and child friendly entertainment. And other friends refused to be insulted by having visits rejected, and continued to pray for a decent recovery.

And family stepped in to sit with whichever child I wasn't driving around to hospital or respite. And to visit tLP every day so I could grab coffee. And to feed the cats, sort the laundry, count the fish, fetch forgotten pieces of equipment (even carrying commodes on public transport).

And tonight, when respite is closed and hospice is full, Ronald McDonald has stepped up, and Mog and I have a bedroom just a 2 minute walk from the ward, and all three of us can be under the same roof for this last night before tLP is discharged.

And Mog informs me she has had a lovely tine and would like to go back to Viking House one day. And I don't think she feels as though she has been shuffled about for our convenience at all, more that she has had an exciting week.

And I am thankful to God for giving her such a lovely time, and surrounding her with carers and nurses not phased by the need for nebs at odd hours of the night, for keeping her stable even when ill, and out of hospital. For knitting tLP's head back together so quickly and for her amazing ability to shrug off major surgery. For all the friends and family and professionals (including some who may fall into two or three of the above categories) who have been helping us out and the others who have offered but so far been surplus to requirements.

And Mog is pleased to have had such fun, excited to see tLP again, and thinking that she would like some new music for her Birthday next week. I think we can manage that.

Tia

Happiness is

Photo doesn't appear to be showing up so trying to send it again.

Happiness is

A knitted Peppa Pig. Thank you, Great Auntie Felicity. 

Peppa needed a tour of the hospital this morning. She found all the coffee shops, and tried a motorbike in the ward playground. She liked the motorbike so much that she decided to keep riding it even after tLP went back inside. But thankfully she agreed to come and take a nap when we tracked her down again. 

After lunch, she had a set of neuro obs. The results were a little worrying (pupils fixed and unevenly dilated, no palpable pulse, blood pressure and sats through the floor). But we decided perhaps the physiology of the knitted pig is different to that of humans, and she certainly seemed happy enough. Bit quiet though. 

Tia

Signs You Might Have A Medically Complex Child no.4316

You come into Theatre Direct Admissions on the morning of your surgery, and can tell instantly which number your child's notes have been assigned.

Bonus points for being recognised by the anaesthetist and most of the surgeons from different specialities too.

Scary points for being removed from the communal area and seated in a quiet and empty room to sign the consent forms. And additional scary points for being told you're last on the list because yours is the big op for the day.

And random entertainment points for every time you spot someone stapling or sellotaping the box back together, especially if you have first witnessed it fall apart as they pick it up. Random entertainment points are useful things; a high score helps turn humiliation (leaking wee bag in the playroom) into humour, and helps turn feeding the bed errors into food for a blog entry. Ish.

Sadly minus points awarded for spending 2 hours in the night trying to comfort a deeply distressed and screaming child, before thinking to ask about medication and realising pain relief is now 90 minutes overdue. Bonus points for not murdering the nurse who both managed to turn up ten minutes after finally settling her to do a set of neuro obs, and them turned up at 6.30 with the comment that she had had a really good night, hadn't she. We won't murder her though; she's been lovely all week really and very poorly babies do take priority over grumpy stable six year olds.

Tia

War wound

It's good to know you can have surgery which isn't going to leave great visible scars. It's even better to know you can have surgery and bounce back as quickly as the Little Princess seems to be.

Lots of visitors today. A better appetite, and a brief hello from big sister Mog, moving between her respites.

Leaving tLP with Grannie and a plate of chocolate brownies (which they didn't save for me), I took Mog to her new respite place. Where she was pleased to see a school friend, and I was a little surprised to see one of my first foslings. He's grown a bit since he was the little boy I took camping in the snow one colder than planned church weekend.

Mog was very pleased to stay, and as I left, was nagging her carer to take her into the sensory room. She decided communication was going to be important, so made the effort to demonstrate her yes and no responses (plus a few minor seizures) whilst I was around to interpret. Clever kid.

Nothing major to report medically; side effects of the morphine have very definitely worn off, femoral line dressing has been changed successfully, temperature staying nicely stable and head pain being mostly controlled. Waves of pain and exhaustion seem to roll over her at random intervals, but between them she's still thrilled that the line is our of her hand.

Small one interrupting this post to say "can you help me to turn over, Mumma, I need to face you because you are a beautiful lady." how do you argue with that, even if you have just been mean and miserable and told her to settle down and stop talking?

Tia