and they think its all over....

....but it really wasn't.

Ah what a nightmare! Poor little Molly has really been through the mill.

After she recovered from the bug (she went down from 19kg to 16kg, thats about 6lb lighter! She was skin and bone, it was AWFUL), we hadn't been back from the weekend away long and her liver tests showed abnormal - first time since she recovered from the transplant. SO scary.

So off we trundled (!) to London, all thinking it was a touch of rejection. Not so. Now I am not sure, but I think I am kind of pleased it wasn't rejection, even though I know that happens sometimes. However, its not that at all. Its a kind of plumbing thing....

Molly seems to have scar tissue which has narrowed her bile ducts, due to the surgery. Quite a common complication apparently. She had to have a biopsy (argh, hate that, its brutal) then an MRCP which is a scan like the MRI - big tunnel, lots of noise.... she was very sedated and slept through the lot! I had earphones and it was still deafening. Amazing.

Anyway, this showed the narrowing. So we are due back at Kings College, London on the 18th June for a PCT. This is done under general anaesthetic and, if I am correct in my understanding!, is a camera in the bile pockets, looking at the ducts. If its not too narrow they should be able to fix it there and then with a wire thingy. (technical, me) If not they wil have to do an operation, but not sure when that would be.

The thing is, this has caused the bile to back up into the liver and she has been suffering from acute cholangitis (infection). I suppose acute is better than chronic.

Her liver numbers are normal now, but any temperature means we are straight into the local (which is an hour away from us). Thats happened twice in the last two weeks.

She is at school today, so fingers crossed she will stay well until we have to go, but I am thinking we will be back in at least once or twice.

We would have been in London or Plymouth longer after the biopsy, but I did the I.Vs at home. That WAS scary and I am not sure I want to repeat that. I suppose I would, as it meant she was home playing, but I HATED being the one causing her pain. On a selfish note, I really would refuse to do it, but Molly was SO happy to be home that I suppose I would do it again, for her. It makes me cry to think about it which is not like me at all but then again, its been pretty stressful.

The other stressful thing is that I am STILL fighting for her DLA - we are going to appeal now. I think it will make me feel better, actually TALKING to someone and trying to make them understand how it affects us (and therefore Molly) financially. I just want to be able to stay home and take care of her when she is poorly, not leave her with someone else. I want to be home when the phone me, not trying to get away from work. She needs extra care and I just can't seem to make them understand this. So very very frustrating and upsetting to be fighting about money when all I want to think about it her health and happiness.

So think of us, send us good wishes. And hopefully we will make our holiday to France, but who knows? We have lost loads of work, being self employed doesn't help. And it costs a fortune to feed ourselves in hospital, let alone travel costs for Shaun and Daisy.

Mr Blue Sky

Ah! Molly finally on the mend - back at school, a bit skinny, a bit weak, a bit pale but doing OK and getting better everyday.

We managed to get a free weekend away, just me and the girls, courtest of the dreaded Tescos. St Ives holiday village. It was fab. The weather was amazing and it was just what Molly (and Daisy and I!) needed. The girls were brilliant, the sky was blue and I didn't want to come home (poor Shaun! Didn't mean it like that!!).

Happy days are here again
Life is currently on the mend
Playing bingo, having fun
This holiday was full of sun

The brilliant beaches soothed our nerves
The clacking train carried us through bends and curves
The chalet in the pretty woods, our little retreat
The naughty seagull pinching Daisys ice cream treat

We came back mended, with peaceful souls
Ready to face lifes difficult goals
This little weekend away from our troubles
Left us inside a happy little bubble.

Winter of Discontent...

Molly is poorly AGAIN! Poor little thing - its been constant since last September really. She weighs 2lb LESS than she did this time last year and of course she is taller, so relatively speaking thats a lot more. She was lying on the bed this morning, feeling rotton, and her hip bone was just sticking out.

I hate it.

So we have had Shingles, suspected Meningitis (we think it was a virus - purple legs a go-go!) and the latest was Pleurisy. Thats not to mention infections (ear and uti), viruses and tummy bugs (what she has now).

I just want to claim back the 3 years of super health we had with her. I thought with the pleurisy that would be it, but it seems we picked up a bug in hospital. Shaun first, then me now Molly.

I have been cancelling "things" that I have had booked for this year as I just can't commit - I don't know when I will be around or when I will be looking after Molly.

And another rant Molly looks to be going down 2 bands for her Disability Allowance- I don't mind that, she is much better than she was. However, apparently I won't get Carers Allowance. I have tried to explain that I couldn't possibly have a full time job - Molly hasn't had a full week at school this winter so how could I hold a job down? But they can't count time spent in hospital etc etc - basically it all boils down to how much more care she needs than a "normal" 5 year old in each illness/situation. But they CAN'T take into consideration that she is ill far more often than a "normal" 5 year old.

Hey ho. Its a very strange world we live in. I think I will injure my back, preventing me from work, and claim DLA. That way I can afford to care for Molly.

Gah.

Growth & Development

 

 

My girls are growing so fast it makes my heart ache
I see them everday and the changes go unnoticed
Then while pondering my photos I stop to take a breath
And there before my eyes my girls have changed, never to change back.

Most of me is thrilled, my insides warm and close
That my little girls grow strong, healthy, happy and unique
Yet a little knot inside my belly starts to whirl and dart
They grow so fast - they grow so fast - childhood passes in a blink

I look back on days gone by and lament the pass of time
Lament that the days are never long enough, I was too busy running round
Too busy doing things that never really matter
While all the time my girls are growing faster, faster, faster

So then I have to shake myself, let go of my melancholy
I have so much to be thankful for, my precious girls are with me
I hope they grow and see me as their mum and as their friend
To tell me all their secrets (well, the ones they decide to tell!)

So laughter returns as I decide to revel in the moment
To enjoy my children and notice the changes happening every minute
I will celebrate their independence, support their deep desires
And remember fondly, with a little ache, how my babies came to arrive

A Merry Christmas to All (cough cough, hack, splutter)

There aren't many of us that have got away with Christmas germ free - my parents have both come down with the Brisbain Flu, mum in particular hit badly. However, we seem to rid ourselves of the neverending bugs and germs just before and had a very nice, quite day! Lunch at one, lots of fun, tv telly, mince pie bellies.

Since then its just been a matter of adjusting back to routine - brrr. With frozen pipes (who the HELL put our water pipes just ONE INCH into the ground? Eh? How clever they must have thought they were!). So no heating, no hot water off and on, with Shaun running around with a little blow torch trying to heat it all up! And before that the boiler had decided to pack up as well which took 3 days to fix. brr again.

First good news was going back to college today - brilliant. Made a "head piece" (don't ask) that looks very like it belongs to the queen of the fairies!

Second good news is that the primary school is doing an Eco week and really getting into the swing of getting the school "greener" which is really exciting.

Third good news is ... ta da we are going on a Summer Holiday! Its amazing! We have never, ever been on a summer holiday. Firstly because we had the boarding kennels and summer was our busiest season and then we moved and just didn't give it a thought! So we are off to Brittany by ferry to a little cottage in the middle of nowhere and I am very very excited. TWO WEEKS!!!!

Mon dieu!!!