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!