Distractions/Actions/Tomatoes

Another age since I posted. The reason for this? My brain has deserted my tired body in favour of someone else. Possibly an alien because I am sure its been running in an unknown language for some time now.

Its been a busy Autumn. The last time I wrote Molly was gearing up for another biopsy - this still hasn't happened. Thats because she got a bad cold. So it was postponed. Then she got a chest infection. So it was postponed. Then she got pneumonia. Funnily enough, it was postponed. And bizarrely, while she had pneumonia, her liver numbers were normal.

Now the explanation for this was that the immune system was being kept busy so it "forgot" to try and oust her lovely new liver. And, sure enough, the liver numbers rose, and rose.

But then she had another chest infection. So the biopsy was postponed. And then... the liver numbers have been kind of declining ever since.

I don't want to tempt fate and say, "thats it!" or "we're out of the woods" but perhaps we can see a chink of light. Her liver numbers this week are roughly the same as last week - that is, not too bad, getting towards normal.

So thats the distractions.

The actions?

1. Fun! My sister in law is over now with her little boy, Shae. Daisy and Shae had fun the first week, fought the second week and have now settled in wonderfully and, for the most part, play really well together. Its good! Of course I am having fun cos shes around to make me feel good - she always makes me smile.
2. Job! I got a job! 2 days a week and its fab. Very local, little office, big business - they best combination. Havne't been here long, but its nice to be "me".
3. Playschool! Molly would go all day every day. I didn't even have to stay with her on her trial day. Bless!
4. Karate! Nopes - haven't made it back yet. I'm trying, but its just not happening.

Tomatoes? Well, lets throw them at:

1. Sleepless nights. Yes, we are still having them
2. Nights out - babysitting impossible. Molly comes with us (so does Daisy).
3. Sick. Lots of it. Molly has been coughing till shes bad. And then Shaun is nearly bad. Nice.

I'm off now! Catch you later xxx

What a crappy day. Waiting to do Molly's blood test results tomorrow so we know what we are up against, but Hospital is fairly certain we will be up the following week for another biopsy and a review of what they are going to do. fuckit. Whats worse is that the little girl I know that had her second transplant recently had been admitted to ICU andI have just heard she didn't make it. Poor little kid and her poor mum and gran (her gran looked after her a lot). Its just so unfair and sad. So Shaun and me had a big shouting match (not an argument, just letting off steam etc etc, we are fine) and are not angry or upset anymore, just BLAH. Its hard not to let it affect us and our outlook for Molly, but every child is so very different. There is another little girl I know who has just had her second transplant and is so very, very well its wonderful news. But how on earth will the other little girl''s mum cope without her? I wish there was something I could do to stop it from happening, but its already happened and I can't imagine what they are going through.

We just finished the two weeks of going up and down to Brighton twice a day. We got into the swing of it and it was OK. However, apparently there could still be some rejection too. I wish they would make up their minds. And I KNOW we shouldn't get cross with the hospital - we would be lost without them and they are doing an important job, but its so hard not to get cross sometimes. They can't tell you everything, but they do have to do some amazing u-turns sometimes. Its not their fault, its just bloody biology but its very frustrating.

We felt in limbo before, and Molly is so well in herself now, but we still feel stressed and in limbo. She looks so well and full of beans, it feels like time is a ticking bomb rushing past and I am SO scared that things will never settle down and we will lose her. Hey, here come the tears again - for someone who never cries I have certainly done a lot of it today. Its like a tap - everyone tells me I should have a good cry and I will "feel better" - what a load of bollocks!!! Once I start its on and off all day and I feel like hell!!! There, that DID make me smile!!!!

Three Cheers for Cock Ups!

We no longer have to go to Kings for these mega immunosuppresive drugs! Thank GOD!! I was so worried as they would have had to keep her in isolation and she would have felt so awful.

The bottom line is that its probably not rejection - there was a virus test (for those of you with liver kids, see bottom of post for full explanation!) that the results were missed. When the test was repeated earlier this week the result came back this afternoon "highly infected with CMV". Yow!!! Which means 2 weeks of twice a day I.V. antibiotics but hey, I can live with that, jsut means alot of travelling a day but at least she doesn't have to stay in and...

ITS NOT REJECTION.

Phew.

Yo Ho Ho and a Bottle of Vanish Stain Remover

Well the day started bizarely (see end of post). The dog (who is getting on a bit) got on the sofa overnight and left a rather unsavoury wet patch (hence the Vanish) and then Molly dropped a load of baby fruit on the carpet.

Took Daisy to school first thing then picked Molly up (still can't take her to the school) to take her down for blood tests in Brighton. Got stuck in bloody Cowfold for a quarter of an hour (I even turned off my engine) for no discernable reason apart from people fucking about and not paying attention.

Then got three quarters of the way over the downs only to be told bloody Dyke Road was shut at the bottom (thats where the hospital is) so I had to double back and go down the fragging motorway then all the way across again.

Got to the hospital and saw the phlebotomist fast. But the lab keeps getting confused so we had to try and sort out whether the result we had was for AST or ALT (quite similar, but react differently). So it took a while. And we still don't know.

Came back and accident was clear - hurrah! Then got stuck in bloody Cowfold again. Gah!!

Got home and new PC for next door had arrived so set that up and Molly had lunch with Granma and Grampy - ah! sweet!!! My mate turned up and I helped her with her Spanish homework (Senor, hay una tarantula debajo de mi bide)

Had to change Mollys rather icky nappy. She is very sore so I covered her in cream. Then she SHOWED me where she was sore and (turn away now if you are squeemish) stuck her finger up her bum. I don't think she meant to.... in fact I know by the look on her face that she didn't mean to, but you know, with the cream and everything.......

Picked up Daisy from school and from the minute she walked in the door she was living in Hype City bless her. I am nearly hoarse from telling her to "calm down Daisy" and "CALM DOWN DAISY!" and "FOR GODS SAKE SOMEONE IS GOING TO GET HURT, Daisy". Then had to rush around because another set of people came to see the house. (ah, may have to further explain that in a later post!)

So poor little knackered hyped Daisy ended up going to bed early (eyes rolling!). I couldn't be arsed to cook by that time to killed two birds with one stone and took Molly out in the car to get a Kentucky (NOT exactly grown your own organic, but for GODS SAKE do I look like I give a shit tonight?!?!?!??!). Which was fine. Except that Molly fell asleep about halfway there and I had to go around the block about a TRILLION times to get a space RIGHT INFRONT of Kentucky so I could keep an eye on her.

Then things got better. Came home, Molly stayed asleep even when I put her into bed (hurrah!!!) and Daisy was asleep too. Ate said Kentucky and am now suffering from wind (you may laugh, but I know it happens to you too).

......... and what started off such a strange day?

I managed to flip my right hand side (or is that foot side?) flip flop off my foot and tread on one of the little stones that Jammy (the dog) brings in so that she can clean her teeth (don't ask - my friend Lisa thought she was having a fit once but she was just cleaning her teeth) and swore quite competently.

Therefore Molly now calls my trendy shoes my "b*stard flop flips".

Up Down Up Down

Well I don't know! These blood tests..... Mollys numbers are up again, (ALT 233) so we are still in the "rejecting" period, although it is mild.

Bloods again tomorrow then, if they are still up or higher, up to London on Friday for the first of 3 i.v. doses of anti-rejection med (over a week but apparently we don't have to stay in).

I must say, it got to me this time. Those of you who read this blogg regularly will know that not alot gets me down, but Molly is SO well and the last vestiges of tummy upset had gone. We fully expected the numbers to be down and it was such a shock. Shes so well!!! Apparently her liver is just irritated but something and they are going to find out what. But by Christ its back to London Waiting!!!!!

On a much lighter but just as scary note, we got the house valued and it looks like a move is on the cards. And blow me, its not even on the market and we had someone see it today and someone coming tomorrow...... ARGH!!!!

Come on Molly!! Settle down little one!!!

The other good thing - new toy new toy! New PC!!! Its superfast with a nice big flat screen (not that my eyesight is failing but you know, I was 36 this year. It will be large print books soon).

So I wrote this blogg extra fast! Sorry no photos - haven't installed the software yet (been spending all night trying to sort out AOL!!! Will be changing to Tiscali very soon - new email will be published here!)

Night!

London 'Waiting'

Off to London tomorrow. Molly's blood test results were a bit screwy, and we are dealing with probably rejection. Hey, don't panic, apparently its pretty usual around this time after transplant.

There was another little one in the same time as Moll and she was in last week with the same thing and went home yesterday, so that was reassuring.

So, we leave at 6.30 in the morning (gadzooks - when the hell AM I going to get any sleep?), bloods at 9 sharp, ultrasound at 9.30. Nothing to eat past 7.30 and no fluids a couple of hours after that. Then, hopefully if a doctor can be found, a biopsy around noon which will mean results tomorrow tea time. If too late then we will have to wait until tea time thursday. In Camberwell, with f*ck all to do. Waiting waiting bloody waiting.

Then if its rejection, 3 days of steroids and home when her numbers settle down. If not, GOD knows, I will let you know!

So, thats it. Not a lot of light relief yet. Apart from a brilliant email from my long lost neice that started Auntie Lu...... Thanks Neice you make me grin!!

Oh, one more thing - Daisy went off on a little summer jaunt with her best mate to Bexhill on Sea! She went yesterday, it was on the spur of the moment and she comes back tomorrow - it all conjurs up a wonderful Enid Blyton kind of summer - Daisy and her mate, the slightly older sister and the little younger brother - all having a Famous Five type of time in pools, lakes, beaches, little trains.... I am so pleased and proud!!! I had to rush around and pack all sorts of bits and bobs for her - its was, in Enid Blyton-esque "all terribly exciting".

Non Starter for Ten

Do you know, I feel that crap today that the only thing I could rouse myself to do this afternoon is update the blog.

But I just can't be arsed.

After 3 years and 3 nights of sleep (that is NOT an exaggeration) all I want to do is sleep. And escape the kids, the housework, and the humdrum. And my waistline (or lack of it).

No More Sicky-Poo

Now I was just re-reading the previous post about Moll's transplant and how poorly she was that week. I thought I had better let you know what happened there!

The hospital gave Molly Immodium to counteract the diarrhoea. Once I stopped it (it wasn't working, lets face it), the poos started becoming normal (I know -eeeewww - but when you have a kid with liver disease you become poo obsessed). And, more bizarrely, the tantrums stopped. Just like that. She has had a couple this week, but totally different really, "do-able".

And she is eating loads. She needs to drink more, which we seemed to get on top of today anyway. So there you go. Mini Update.

Where in La-La Land Exactly AM I?

Its a strange time. Molly is exceptionally well - amazingly well - fantastically fantastic and I adore her. She is playing, running, laughing, being cheeky, doing horrendous nappies and laughing. She is sleeping (well, if you can call it that) in the bottom bunk with Daisy.... and yet we are only a few weeks after she has had a liver transplant. Its a miracle.

And yet..... its still a see-saw. Her blood tests have been perfect... until this week. So we are looking at a probably biopsy later next week/early the following week. Exactly - we are WAITING again. Its a normal part of liver transplant and we were told to expect one or two of these times at least ...... and yet....... BLERGH.

Do I have to explain any more? Probably not. I am thankful, grateful, ecstatic that she is so well and so happy. And yet I am low, tired, washed out and world weary.

We were thinking of booking a holiday for the end of October. Everytime things start looking positive, something else looms.

There is some more amazing news that puts a MASSIVE smile on my face! My niece, who we haven't been able to have contact with, has been in contact with her mum, my sister in law and best mate. Along with the rest of the family I have been waiting for this day and I can't stop grinning! I have the pictures she sent all over the place and she looks SO much like her mum it took me back to our teen years and made me laugh and smile! I can't WAIT to meet her and hope that she feels OK and not scared - her mum is amazing and fun and loving and she will adore her I am sure! That, of course, is a load of WAITING OVER!!! 14 years of waiting! FANTASTIC!!!! She was this little chubby blonde 3 year old leaping over my sofa shouting Stuck! Stuck! when she got her sock stuck on the edge and was dangling upside down. Now she is 17, absolutely georgeous and learning to drive.

And heres another equally brilliant thing - I haven't seen her for 5 YEARS! But my best mate, her mum, my sister in law is COMING OVER FOR 3 MONTHS!!! God are we going t have a ball. We can reminice again about me being 5, with a plum in my mouth meeting her brother (my hubby now!) for the first time and uttering the immortal words "My names Luthinda and I want a Pony".

So there I am smiling again, after all these strange days this week. There are downs and ups, ups and downs and life goes round and round and round - but my God I can ALWAYS find something to laugh about!!!! The day I can't I must have been taken over my aliens, cos its just not me and I don't stay down for long.

Even thinking that I have to go to Camberwell for another week with Moll I have been plotting - she only needs to be in for bloods and 1 dose of IV a day - which means we can go down to the crummy charity shop in Camberwell which is like an amazing Aladdins cave - we kitted ourselves out for 6 weeks there and now I can go "gold panning" there again!

Ah well. Time to put the kids in the bath. Mmm. Could be interesting............................! Wet floor and wet Lu here we come (now I could be rude here but there is absolutely no hint of that on the bloody horizon for f*ck it).

p.s. I got home and rebelled. My hair is now, officially, Pillarbox Red and I love it.

Tom and Barbara

Now I just have to add another post that is only semi related to transplants, if only for the time I wasn't here!

If you have read my blogg you will know that I have been attempting to fill my patio with foodstuffs that I have grown and the occasional pretty thing like flowers and bits of corn.

Of course, everything bloomed while I was in London for 6 weeks! Bah!!!! Mum in law kindly sent me some piccies which was brill!

However, I have successfully grown two cucumbers in my "multi" pot. God knows how many tomatoes in the top of the multi pot - all green at the mo. Will they ripen? Who knows! Strawberry plants in the sides were a bit smothered. So I tied up the toms with my reel of twine that I got for my birthday and trimmed all the old crap off with my new secateurs. Marvellous!

We dug up my tub of potatoes and they are brill! Lovely new spuds and we ate some last night and they were SCRUMMY! (look, Molly may have been sick afterwards but that was just co-incidence OK!?!?!).

My stocks got drowned cos they had no drainage hole. My spuds were the same but apparently that was good for them as the soil was fine. Sunflowers are sky high and just about to bloom. My herbs have gone mad, as have my verbena and lobelia and my sweet peas out the front have two blooms. Mmmmm. They smell yummy.

Just thought I would tell you. Not that I am boasting. Just I GREW STUFF AND WE CAN EAT IT! How Cool is that?

All Change! New Baby.....

This is NOT going to be the upbeat post I thought it was! However maybe recounting the miracle might put things into perspective?!

Molly finally got her transplant! I can't believe it, as these last couple of days we are having a bit of a nightmare again, but I digress and will start from the beginning.

I got the call Monday 27th June when I was at Tescos, halfway round with a full trolley! We dashed back home and waited for an hour for the ambulance. So I called the co-ordinators, who were somewhat horrified that we were still in Sussex! I asked if the team had gone out yet and was the liver viable. The answer came: Yes! Its here and Amy is already out of theatre...

(Now I must explain about Amy of course! Amy and Molly are the same blood group and although a fair few years apart in age, birthdays are only a day apart! We always wanted Amy to have a big lobe and Molly to have a small one. So the fact that Amy was already out of theatre..... )

Well the ambulance came after some heavy verbal artillery from Kings and we were blue lighted up to London (it was an ambulance car - cool!). That is most definitely the only way to travel through London thats for sure! Throughly enjoyed the ride. Molly slept through all the sirens etc until we got to the hospital. Then a fire engine went passed and she woke up!

We were in theatre within the hour - amazing! Great actually - we didn't have that awful wait to see if the liver was viable and no hanging around on the ward waiting to go down - it was all whoosh bang go go go!! Once we got over the initial minute of emotion at letting her go into theatre, there was a big AH! from both of us. The relief of a liver finally being suitable and no more watching our child get sicker day by day right in front of our eyes - I can't tell you how relieved we were unless you have a sick child yourself. Its amazing.

And then 6 hours later (yes only 6!) we had her back again. They had a bit of trouble getting the old liver out - lots of adhesions etc. But once it was out it was all plain sailing. As of to date, the graft (liver) itself has been consistently good. One less thing to worry about! It was a good match for her.

24 hours later, Molly was back on the general ward. She took her vent out herself so they had to hurry things along somewhat! We did have a few issues with pain relief, but it got sorted in the end.

2 weeks later and they were talking about discharging us! Now that WAS scary - bit too soon. What they did do was discharge us to a flat for a few days. (Explain: The Rhys Daniels trust was set up by the parents of two children with health problems. The trust buys flats nearby to the hospitals so enable families to stay together. It was brilliant and a complete lifeline.)

Then the trouble started! Nothing too major, we have been lucky. But Molly did get a load of fluid - a bile leak for those in the know. This is due to Moll having a "cut down" liver. It has a raw edge that has to heal and it just took its time! Poor baby had 500ml (about a pint) in there at one point, all infected. So 3 drains later..... and a little infection, and a tummy bug...

We came home on Friday after spending a few days at the flats. She is AMAZING. Skinny little thing at the moment as she is still having bad diarrheoa and is occasionally sick. But she is running, climbing, laughing - its wonderful to see.

We are going up tomorrow for a check up and an ultrasound to check for fluid. The main trouble we are having is that she is not eating or drinking hardly anything (although that has been slightly better today) and has lost loads of weight. She is also having TREMENDOUS tantrums. Now that could be seen as a good thing. Indeed when it started we were pleased she had the confidence and energy to throw her weight around a little. Unfortunately these have built to around 6 today, lasting anywhere between 10 mins and 1 hour. They come on fast and she really gets incredibly upset - almost to the point of making her sick. We are wondering if its the steroids.

So tomorrow hopefully answers some questions - or poses more. And yes, this has put things in perspective a little. She is so much better health wise - its just that we are exhausted from worry and lack of sleep. (No, she isn't sleeping yet!).

We are so very glad our little girl is on the mend but god, I hope she starts eating and drinking soon. She WAS eating and drinking LOADS after the op - I couldn't stop her! Its just tailed off slowly but surely over the last 2 weeks. She was looking chubby and full of fun - now she is tired and angry. Not what we want for her. But she no longer has Biliary Atresia!!! And no longer has a huge tummy. We don't have to worry about bleeds or dehydration (well, not as much). She is fantastic and I am in total awe of the surgeons. Thank you all.

p.s. did I mention the bombs???? I am sure you are all aware London was bombed - Kings College was somewhat in the middle of the trouble area - suspects everywhere and the man that was shot (was it 5 or 8 times in the end?), well that was a mile down the road. Lots of sirens/raids/explosions that just weren't on the news. Scary stuff.

Ooo-La-La

Nothing much occurring our end really. Still waiting for little Molly to get her liver. She is doing OK at the moment and seems quite perky although she does get tired quickly.

Shaun and I have started a RHS (Royal Horticultural Society no less!) course level 2 in horticulture. We had a look at all the general gardening courses but thought, well, in for a penny in for a pound. So we went the whole hog and should end up with some qualifications at the end of it - if we pass!

So the course work turned up the other day. Cr*pping Hell!!!! Read the first page 3 times and didn't understand a word of it. Got a whole host of words to learn including thallophyllic (NOT phallothyllic Lucie, whoops....), cryptogams, monocotyledons and dicotyledons and thats only the very beginning. But we ARE enjoying it and its nice to study together. Just a tad daunting!

Karate is going well and I have lost a lot of "size" and the weight it dropping now too. I love it and could throw myself into it totally. My Sensei wants to get me back to grading where I was, thats 6th kyu (green belt) to those in the know. Its going to be hard work but I am so enjoying it. Its done me the world of good to get out there and forget, well almost forget, all the stresses that life is throwing at me at the moment. Mind you I have to keep the phone of in case the call comes in for Molly, and the phone going off (I have it set to "Rooster") usually cracks everyone up while I am running around like the headless chicken itself just in case its "The Call".

Do you know, I really haven't been up to much else? Quelle surprise. Oh, did go into town yesterday and surprised myself. It was the French annual market and of course I had to have a look. My sunglasses exploded on the way in the car (don't ask) so I tried to find a pair on the Mr French stall for a fiver. Found the style but the colour I wanted was buggered up (arm hanging out to one side). So I said "Je te donnez trois, et je l'arregle". Not perfect. But I got them for £3. Bent the arm back and?

mais tres bien!!!

Strawberry Fayre

Oh dear - its been a while, which means I have loads to write. Which won't happen of course! You know me. So a quick run down...

Still enjoying having Daisy off school, if a bit hectic! I am not as bad a teacher as I first thought. We are doing things our way, with some help from the school, and enjoying it very much. And if I have a little trouble gettng her to do stuff, I just made her laugh by saying terrible things like "crappy maths! come on! I'm bored and this is pants. Count the blimmin fish and lets go and play!". Probably not the best strategy but hey, what do I care? Shes counting the f*cking fish.

We did the school trip - they were going Tuesday so we went Monday. And the wonderous Terri (Molly's Dr in Brighton's secretary is married to the manager of Brighton Pier (got that tenuous connection?)) and gave us SHED LOADS of free ride tickets. My mate Lisa came with me and, wonder of wonders, Molly was on top form and was more than happy to spend time with Lisa, which meant I got time to spend with DAISY!! Yay! Which meant, 4 rides on the log flume without even getting out of the boat - round and round and round and round. Daisy wrote in her news book: I went to Brighton and I went on the log ride four times. We got wet and Mummy screamed. mmm. Not sure where the SeaLife featured in her day out, probably not where it should have! (Molly loved the fish tho! So did Daisy actually.)

We also went on something called the Galaxian which was amazingly hectic and the funniest ride I have been on for years. The school trip stopped at the Peter Pan playground. Which looked so tame after the Galaxian that Daisy wasn't even remotely interested in it. Ah. Oops.

Also went on the trampoline!!!! Haven't done that for YEARS! Pulled muscles!! Found my pelvic floor muscles... didn't exist........... eeeeewwwww!!!!!

All in all had the best day out for a long time.

Then yesterday it was up to Kings for Molly's checkup. Took Daisy with us. And it was a very positive day - she is better all round that last months panicky trip and is holding her own with the fluid in the belly thing - without her medication. And she has put on weight (not just weight in liver, fat and muscle). And grown. So that was brill. Then we came home on the train and stopped at Gatwick for tea. Pizza Express.... we tried again and No! daisy didn't throw up at all. Fantastic. She ate a whole junior pizza and the biggest ice cream in the world. Molly took me into the bag shop which was a terrible mistake. I didn't buy one tho! Only cos I was feeling stubborn and didn't want to be too predictable. And now I am sad.

Tomorrow is the village fair. I am taking Daisy in the afternoon and leaving Molly with Shaun et al. Can't wait! Should be fun.

As for strawberries - yes, they are growing. One is almost red! and I bought stocks last weekend which are growing in one of those funky tub things. And my potatoes have gone mad, which is a bit scary kind of like triffids in a pink tub. Bit obscene really.

Tomorrow morning sees the weekly visit to Horsham market and the vegetable man, which means, of course, that I will buy some plants from him. he usually sells about 6 in a pack that he has pre-grown for about £1.50. Surprise plants! But where can I put them? If I put much more on my patio we won't be able to get out there. Oh well. I like living in a jungle, me.

Hi-Yah!!

Oh yeah! Forgot to say - took my courage in my hands and went back to karate after a 13 year break!

It wasn't nearly so bad as I thought it would be. I am NOT as unfit as I was when I first started (which is a miracle as I was 21), and I haven't forgotton too much - just really rusty!

I was fine yesterday (the day after) but a bit sore today. Nothing too much apart from my knee which I twisted due to bad technique. Was going tomorrow night, but now I am not so sure as I don't want to do too much damage to my knee - fancy doing it the first night!!

I am really pleased to be training again and its nice to have something (or someone!) to take my frustration out on. I definitely benefitted from it. And I should lose even more weight. Bought new jeans the next size down the other day, so it may be slow, but it IS coming off!!

Belly-Full

A day of changes! After speaking to the hospital in light of their panic when chickenpox once removed was mentioned, we have decided to keep Daisy off from school for the meantime. If, God forbid, Molly still isn't "done" by September Daisy will go back as it is her first proper year (she is in Reception at the moment) and I am concerned she won't get back into the swing of things. So Mummy is now "Mrs Wilby" - teacher extraordinaire!

I have had to get organised (groan!!!). It means giving her day some structure, following on with the school work as much as I can and keeping her from running wild/emptying the larder out of boredom. Its been quite hard explaining to friends that I can't keep chatting on the phone. Do you know, I could quite easily ban incoming calls? I love email its so much more civilised! I know I know, born a hermit......

On a more serious note, Molly's Sprinolactone (for fluid in her belly) was stopped the other week as they were concerned about her high potassium (we don't want to buggger up her kidneys). Its taken a while but as of yesterday, and getting worse, Molly's belly is absolutely huge. We are going up to Kings next Thursday so providing it doesn't get much worse we will hang on till then. Fingers crossed please!

Finally planted my strawberries etc. Have a tall strawberry pot with 2 strawberry plants, 2 cucumber plants and a tomato plant in the top. Yum!!!!

Achey Breaky Heart

Another day gone - shwammmm - new lightsaber added to the collection. We now have Luke Skywalker, Samuel Jackson ("Jedi in his own right, he is") and Annakin Skywalker (boo! hiss!! includes impossible maze puzzle.)

Boring day at home, then had a nice visit from my mate that cheered me up! Molly went for her nap this morning and I thought - brill!!! time for a bath (she goes down for 2-3 hours). Ran the bath.... Molly woke up. Argh. But then Tash came and we spent a nice afternoon together which really cheered me up and chilled me out.

Daisy went to my mums until Sunday - I will miss her but she does have fun. Her other Grandma took her and they all spent some time together with Daisy was over the moon about!

Molly took over her quota of milk - in fact 100ml over! That might not mean much to some of you, but those of you with sick kids with rejoice! And then, top this, ate a bowl full of pasta! Again, a Molly bowl - probably 3 to 4 tablespoons, maybe a little more, but ALL GONE! Due to no nap, she went to bed at 5pm - so did the invoices, had my tea, writing this blogg. Then I will do Shauns tea and have a bath.

THEN


I am going line dancing. tum te tum te tum. no giggling at the back.

Star Wars Schmar Wars

With Star Wars III all the rage and little lightsabers everywhere, it was only a matter of time before my two little girls turned into Jedi Warriors full of mischif-chlorians.

Two mini lightsabers from cereal packets later and they "schwoom, shwam"-ing around each other. Which is really funny, especially with Molly doing it. With her lovely yellow-green skin tone at the moment and the fact that she is so weenie.....

Yoda lives.

Droopy Drawers

And there went another day - whooosh!!! We all seem to be back on an even-keel this afternoon. Yesterday felt a bit like the day after your holiday - all hanging about with nothing to do.

Molly made me laugh today - came over to me at the pc and started shouting "PANTS! PANTS!" Well, it took me AGES to work it out! She had some jeans on that were a tad to big for her and had fallen down under her bum. Apparently that is PANTS!!! I would kind of agree with her. I had a similar thing all day - my jeans are a bit big now (note the smug tone to that last sentence) and my belt was in the wash, so it was PANTS all day!!!!!

We finally realised why she is not eating and no, its not just because she needs a new liver! She is teething - poor kid! Thats the trouble with these little ones, they are so tolerant of pain that I didn't realise. So she has all four big back teeth coming through. For some reason to do with the liver thing, her teeth are very small and extremely sharp and pointy - so her poor little gums were bleeding. She also has terrible nappy rash. Calpol Calpol Calpol we love you (although Molly hates it - bizarre! All these gross meds she takes and she screams at calpol.... wierd).

We have also found that she is attached to certain things and hates change. She FINALLY wore her new slippers today that I bought her for her birthday - I had to hide the old ones until she forgot about them!!! She has to have her pink coat, and her stripey cardy (I have put it in the wash 3 times and she keeps dragging it out!). I am really pleased that I bought an extra pink blanky dog when I realised how attached she was to it. I keep swapping them over so neither is too new and have one in the transplant bag.

Right, off to do some knitting. Gah!!!

They Were Right Before! The Earth is Actually Flat (super mega mix v. 3)

Amazingly, Molly went to bed at 3.30 in the afternoon and didn't get up until 6am! That includes the usual milk stops every 3 hours or so, but really not too bad - we were all SO tired after yesterday.

Got up this morning feeling out of sorts and two dimensional - all of us just a bit snappy! Now, having had breakfast and writing in my blogg I felt a lot better. Having just started it for the 3rd time - snappy is winning again!!

The sun is still out at the mo (forecast thundery showers - nice!) and we have a few things to do. Washing (yuk does it ever end) and then we are getting the kids summer things out of the loft - cue thunder - put the winter ones up in the loft, and Shaun said he would help me change the curtains - hurrah!!!

Then, if the weather holds, I am going out on the patio! Yes, I am still trying to kill things in pots - I now have more things to put in - 2 strawberry plants (have got a special pot for that already apparently!), 2 cucumber plants , a tomato plant and two sets of mini plants I got from the Daily Mail - now theres a thing, they came in the post half dead! So - ta da! - I revived them in my lasagne dish! And they are fine! Its a miracle. So had absolutely no choice but to buy two more hanging baskets to put them in. And then theres a little mauve daisy plant that looked pretty. mmm. Ordered a little gardening kit from the paper too - no doubt that will come when I have finished/killed everything! I haven't actually killed anything yet, although I did spray my rose with a weak soap to kill the greenfly (as advised!!) and then noticed something was eating my herbs - so sprayed them too. Not sure if that was a good idea or not! Soapy marjoram possibly not great.......... . Wanted to buy ladybirds and a ladybird house, but soap was far cheaper!!!

Daisys sunflowers are growing and I have planted my sprouting potatoes in a big pink plastic trug/tub thing. My own mini garden on the patio! Shaun is going to make me some window boxes too - how twee is that?!?

The wildflowers outside Daisy’s playhouse that we fenced off look wonderful - I weeded out the grass and left anything vaguely pretty and it does look nice. The foxgloves by the house are huge this year and are just starting to flower - mauve/pink colour. Amazing!

I put on 2lb during the week but today, weighing day (groan), I have lost one of them (where did it go? where did it come from? it must have been a stray needing a temporary home).

PLEASE feel free to leave messages on my blogg ! It amuses me! My email is luciewilby@aol.com if you need it when you try to leave a message. I don't like the "messages 0" thing its depressing. And no, I don't offend, lifes too short. If you say something offensive thats up to you - its your problem not mine

Away Day

Gah! Got the call yesterday afternoon for Molly's new liver! Amazing! Had about 10 minutes to get our sh*t together..... gah gah gah!!!

Had a hectic ride in an ambulance (Daisy was impressed - it was flourescent yellow) up to London. 2 hours and lu-lu came out flourescent green (Yuk, no windows....). Up to the ward where they put her cream on and sent us for an x-ray (no forms, so half an hour later ward nurse flinging her weight about we got the x-ray). Back up to Mountbatten ward for swabs (Molly thought the ones up her nose were most amusing but was absolutely outraged by throat and groin!!!). Then 3 attempts by ward Dr to get canula in. After bruising two hands and an un-anaesthestised foot Shaun told her to sling her hook (well, nicely I add - which is amazing for him) and got the Registrar in. Had to be in the foot of course, but we "iced" it with spray and she went in first time no probs. Why do that have to practise on kids?

Then came the wait... wait... wait. 1.15pm the news came that the liver was NOT suitable -too fatty. Gah Gah Gah. So we spent the night, catching an hour or so of sleep. Molly was disconnected from her drip and came in bed with me for a while. Then we had to wait for the Dr to give us the all clear and go home. We got home about 12.45pm.

And now? I could go to bed!!! We don't feel too let down - we knew it was a possibility. Actually I feel better for having been - I have "edited" the hospital bags - I now have stuff I will actually need in there!!! And I know what to expect. And, of course, it feels one step closer and I don't feel so panicky.

Ask me next week how I feel and no doubt it will be..... panicky - "will the liver ever come?". But for now...........

its close

Pavement Pizza

Shit day/night////life! But is all started so well....

Took Moll for bloods this morning which actually went very well and very fast (phlebotomist - always good!). Had a day in Brighton which was very nice. Picked Daisy up from school, got home, and got Daisy changed into her new uniform and off to Rainbows to Enrol - cute! Stayed the session with Molly who enjoyed it as well. Made Rainbow fish.

Then the plan was to take them out for tea to Pizza Express - which we tried to do. Walked into the restaurant, got to the table, Daisy threw up before we sat down. I cleaned it up, we left.

Hmm. Thought she was car sick so went for a little walk. Decided on fish and chips (oh great, just what I need on a diet, but didn't like to argue!!!). Picked them up. Drove halfway home. Stopped once cos Daisy felt ill. Carried on. Daisy then sick three times in the back of the car. EEEEWWWW.

Got home, Shaun cleaned the car while I cleaned the kids. Took Daisy to bed after putting Molly in her bed. Daisy sick again, extremely neatly, in her heart shaped bucket. Much easier than in the car I must say. Very tidy.

So shes got a bug! Argh! Which of course is well dodgy with Molly, as if she gets vomiting or diarreah she has to go to hospital for fluids because the artery leading into her liver has extremly high pressure. If the pressure falls blood can't get into the liver and cells start dying off i.e. mega infection. So if she gets it I will be spending a while in the hospital. Marvellous.

Got cross with Shaun. Shaun got cross with me. Going to bed. Why can't they PHONE????? Where is her liver???

scoubie-doubie-doo

Hmm. Whats to report? Well, skipping aside, the next big thing appears to be scoubie-dou - for those uninitiated when they were at school way back when, its the "art" of knotting plastic strings together to make, well, knotted bits of plastic. Pretty colours though. Hang them off your bag/round your neck etc. You apparently can make animals etc, but have yet to see any emerge. Needless to say, with an impatient 5 year old wanting to do them, I have been making a few myself. And found myself strangely addicted......

Molly had a visit to Kings College Hospital again last week. She is OK but some aspects of her disease are slightly worse. I am not going to go into it to much, suffice to say we are feeling the pressure of waiting and are wondering how long she can manage this disease as well as she is - she is fairly exceptional in the way she is coping. That said, she had lost weight so they upped the concentration of her prescription milk and we have stopped worrying about "meals" - she has such a tiny tummy she can hardly fit anything in (unless we go out for tea - then she manages a whole jumbo sausage to herself!!!). And yes, I really think she has put some weight on. Well I am sure she has.

The new pills are working well and have started today after advice from my mate Kay, to take Soy Lecithin to try and break down a possible fatty liver. Grand weight loss total: 10lb. Yay!

And thats it. Off to Brighton tomorrow for blood tests (long story, last week at Kings was a bit of a cock up with a new doctor and LFTs didn't get done) and a days shopping. Was going Wednesday but no electricity all day tomorrow so thought I might as well go out!

Daisy is getting enrolled (finally!) into Rainbows tomorrow which Iwill go and watch. Then we are going out for dinner, Daddy's treat. That will be GREAT! We haven't been for a very long time.

Ta-Ra!!

Chunky Mooey

Ah another day dawns. Moll still awake about every hour and a half, weather sunny but bloody cold wind. Brrr.

Felt low again today, but diet was going well! Got cleaned up a bit after the panic that was the birdhouses. Well, the kitchen at least. Watered the plants and planted the sweet peas in the butler sink outside the front door.

Molly was due to go to playschool, but they have a bout of tummy bugs so to avoid a stay in hospital we stayed home. Took her for a ride on her trike down the track which she thoroughly enjoyed.

Then we went to pick up Daisy from school, with the idea that seeing as I had to go to the village to pick up Molly's medicine I would treat them at the sweet shop and take them to the tea room. All of which we did, apart from a detour to actually visit the doctor after Molly fell flat on her mooey (crack! Thought she had broken her nose...) on the way to school. She has nearly bitten through her top lip - looks a right mess! But it stopped bleeding and it doesn't seem to worry her unduly. Apart from looking like a chimp with colagen injections that is.

These are the days......

The Wilby Juniors - Fun in La-La Land

The Wilby Juniors - Fun in La-La Land

NOT Fun in La-La Land, I can tell you!

Well, Molly is now 2 and has had a birthday. She had great fun. But we are STILL waiting. I know they have told me that she is actually in better shape now than she was but hey, she is still waiting.

She isn't sleeping at all well now. She woke up now with "T-ache, T-ache" - Tummy ache to you and me. Of course she gets tummy ache - poor little baby.

But she is OK. She's just fed up like the rest of us. I know it will happen, but it feels like it will never happen.

I am still trying to lose weight - I have lost another 1lb. Wa-hey. Its just not coming off. The Dr gave me some tablets that, ahem, will make you go to the loo if you eat fat - it stops you digesting it. However, seeing as I am not eating fat they aren't doing anything to me! Which is good, I suppose!! But the weight isn't coming off either. 1lb comes off, then it goes back on. I just wish I knew whether or not I would be suitable if I could lose the weight - I am sure it would help.

Anyway! Its a doom and gloom post. But! We HAVE been making bird boxes, and they look great! The local gardens have taken them for their gift shop, together with hand painted plant labels and greetings stabbers - its been a very busy week which is tiring, but worth it. I took them this morning, so am hopefully going to have a quieter end of week! We did 7 boxes.

Thats it! I am cold and tired. I want a bath and bed, but its 9.32pm and we have some estimates to do too. Gah.

The Weekend Good Life

Not a bad day today - if hectic. Got up at dawn (thanks Moll) and then got up and ready to get to the Farmers Market in Horsham. I like to be there about 8.30 but it was lashing down with rain so we hung on!

The market was good. Only one of each type there, but the veggy man was great. Bought, for the grand sum of £7 - purple sprouting brocolli (yum!), 2 cucumbers, bag tomatoes (v nice!), 3 onions (bit wet, was raining), celery, 4 jonagold apples, 1 big bag cox apples, 1 parsnip, er, 1 small cauliflower, 1 bag "big" carrots, 1 large bunch of carrots (new ones, lovely!). then I went to M&S (cop out!) and bought an iceberg lettuce cos I am addicted to them.

Tipped the buggy up once (it was really heavy - Moll really needs to put on some weight). Bought the kids cheese straws, ate one (ARGH!!!). Bought Moll a birthday present (she wouldn't let it go - I had absolutely no choice).

Got back with loads of time (managed to get back to the car park pay machine 2 mins before the next price hike - result! (I always get stuffed up by getting there 2 minutes after)). Then everything ground to a halt. Put Moll down for a nap, ate lunch with Daisy and watched Spiderman (ffwd the nasty bits!! ). Moll woke up. THEN - 2 haircuts turned up that I had forgotton about. So I am £15 richer, but the house is still a TIP.................

ah well. If the dirt on the kitchen floor gets much deeper at least I can grow my veggies indoor.......

Baby in Waiting

What a weird day. Dropped Daisy at school this morning and took off to town to pick up some stuff - mainly to look for a fleece jacket (its COLD in the mornings in the playground but not cold enough for a coat). Of course, even though I could see my breath in the air, all the shops were selling bikinis, cut offs and thongs (shoes and pants!). Neither of which would look good on a COLD overweight 35 year old. Wonderful.

However, I did end up with more plates. NOT that I need them. Its just they were sitting in the charity shop and were a complete bargain. Spode and georgeous. So I bought them. Argh. And a bag of clothes for Molly too which were even more of a bargain. And a pair of Jodhpurs to sell on eBay which were almost perfect. And then I went and bought Shaun's benecol yoghurt. And came home.

And then tidied the kitchen. Then got Daisy. All the while kind of "waiting". Waiting for the blood test results to come in but mainly waiting for Shaun to come home (not used to him being away at work!) and mostly for a liver. Now please.

And the kids? Driving me MENTAL.

Weird day.

La La London

A day in London today! Got to Kings College Hospital around 12.30. Saw the Dr, did bloods, ultrasound, Vit E jab and spoke to co-ordinator. Weight and height - both increased (Molly has put on fat and muscle - hooray!). Ultrasound was pretty much the same as before and she has hardly any fluid hanging about in her belly (amazing). They are pleased with her and are still amazed that she is eating relatively well - long may it continue.

They haven't done any transplants on the kids side for about 3 weeks and Molly is still up in first place - fingers crossed it won't take long.

I had my blood results too. My cholesterol is 5 which is normal (yay!) and all my other blood tests are good too! So we are continuing with the diet for 2-3 months then, if god forbid Molly is still waiting, we can run some more tests on me to see how suitable I am as a donor.

We then hit rush hour, so decided to detour to Nando's for dinner. Lovely yum yum! Got back to my organic veg delivery -not bad at all except only 4 apples when we get through 12 a week. Hmm. Also email from farmers market info - one in Horsham most Saturdays so am going to try there this week and see how it compares. How hard can it be?

To top a strange day off - I went back and put in all the stuff I had eaten today (hmm including a Twix - not good!) but have found I am only 2points over which can be rectified tomorrow. Amazing! Thank god I joined WW again - if only to keep me sane.

Now I just have to find out how to cook the Celeriac - thanks Delia, looks like I can roast it!!! Have something else too - Kol Rabi - better look that up too....... night night!!!

We are trying to "go the Good Life". It probably won't surprise anyone that knows us thats for sure! We have planted (well Shaun planted I did a bit of raking and put some seeds in holes when Moll was asleep!) our veg - french beans, broad beans, spinach, peas, and some other stuff I can't remember (some in trays!). Can't wait for it all to start coming up!

Next year we will "do" our own chickens too. Did you know that even if you buy organic chicken it still gets bumped off in the same plant as the disease ridden stuff and dipped into the same hot water as all the other chickens???? Yuk. So we want to do our own. Well, Shaun will have to do the nasty bit! I'm too chicken (groan!)

Other than that, tomorrow I get my first "organic veg and fruit box" delivered! Works out about the same price and its as local as it can be. Cool!

God life is very humdrum other than that. Its just waiting about for Moll really. Daisy joined Rainbows last week which is very sweet and she enjoys it very much! Its like pre-Brownies. She will still be riding too which is good. Since the weather has been better I haven't seen her for dust! Out riding her bike, or working with Daddy or Grampy or just bumming about outside here and there. Everything that I wanted for her.

The school is improving too. FINALLY they are installing electric gates which is BRILL. (Dids got locked outside in the playground (not secure) which was scary. So now the kids can't get out and no-one can get in without permission. About time too!!! Her teacher is back on form and they are learning well. Altogether I am happier about her schooling and don't have to worry anymore. Well, for the time being anyway!

We are still thinking about a move to the West Country. Obviously we can't do anything until Moll is "cooked" and stable but then, lookout! I think it would be good for all of us. Mum has also been thinking of moving for ages - anywhere from Norfolk, France, Gloucestershire etc. Now we are thinking of West Country she is too which would be brilliant. I would love us all to go there together. The Hospital say they will still treat Moll even if we live down there so thats good too. Hopefully we won't have to make the trip too often.

Shaun has struck out on his own now - he is doing the Handyman thing which he loves. To quote "Small building work, gardening, property maintenance, incomplete diy projects, clearance (house, garage, shed etc)". We want to do the clearance and re-sell thing cos we love it!!!

Blah Night Ahead

Well, its 21.10 and the kids are in bed. Have been up to Daisy 3 times but she is settled now. Have been up to Molly 3 times too but am feeling that we are in for a rough night. Ah well. Off to Kings again tomorrow. So am going to read for a while and then head up for BED!!!

Shaun had an excellent find in the skip where he works today - some Epson toners, new, for a colour laser printer! Cool!! 2 of. Worth £114 new. Will hang on for a while just in case someone needs them back!!! Otherwise, eBay here we come.......

What else? Nearly burnt the house down again.... left the back burner on my shitty cooker, but unfortunately had put the electric hot pot on the hob to serve up....... ooops. Shitty meal too!!!

Yoghurty ice cream was nice though! (low cal)

Diet for Molly not going well at all. Weighing myself again Wednesday but it looks like in 2 weeks I have lost the grand some of, wait for it, 2lb. Fantastic. Really should be able to reach my "'I've lost 3 stone" target in the next 3-4 months and help Moll out by being a live donor. NOT. So, Weightwatchers site here we come cos I must be doing SOMETHING wrong. Bugger it - hate giving them my money!!!!

Night! Buenas noches.

The Wilby Juniors - Fun in La-La Land

The Wilby Juniors - Fun in La-La Land

Fun in La-La Land

Well, this is just the first post in a long line of them, no doubt.

I am not going over old ground, suffice to say that my youngest is waiting for a liver transplant.

So my life revolves around my home and her health.

My eldest is doing really well at coping with it - 5 going on 15 when she is at school tho!

This is us:

Shaun (40 this year - Ha!), Lu (36 this year - Bah!), Daisy (Dids) (51/2) and Molly (Mol, no less) who will be 2 on 1st May.