Sonny had a session in the sensory room in the next town from us this morning. I got the date wrong but thankfully it was empty and there was a staff member more than happy to join us. He loves just chilling out and watching the bubbles and lights more than anything.

Luke has meningitis again.
He had a really good day yesterday, Nikki said he was being really cheeky. He turned in the night and had a temperature this morning. A scan revealed fluid on the brain again. He is back in critical care and awaiting further treatment to battle the infection.

I should never have let my guard down.

He's beaten this before. He has to do it again.

I have been home since Monday. Im sorry I haven't updated but I haven't been online, my heart isn't in it but I' feel bad not responding since I get so many texts and messages.

Luke got through the vital 48hrs and sadly I had to return due to lack of funds and family problems between parents. Thankfully, I got to say goodbye to Luke and his eyes flickered. I felt a little better and have tried to give my head (and my heart) a few days off by trying not to think about it too much other than my daily update.

Luke had a tracheotomy this afternoon so that he could come off the ventilator and hopefully commuicate a bit better. He's still very confused, sedated, paranoid and sleeping most of the time. He came round initially to Nikki's perfume which is awfully sweet.
He's very scared from what Dad says, just by the look in his eyes and he's one arm is making involuntary movements. He still has meningitis but when I left Mon, the drs were pleased with the way the fluid was draining from his brain. Nikki and Dad both said that before he went in for that op, before I got the last bedside call that he was grey and didn't look like Luke. They felt that he wasn't going to make it.
He will be HDU for a long time, it's a very long road ahead and we have no idea what the future holds. Yes, he's better than when i have been with him but he's still very ill. We don't know how he will be physically or mentally. His confusion is very scary and the phyiscal toll is apparent.

Myself? I feel torn. I was glad I got to be here for Mother's Day, even if I had to leave in a hurry again. I'm mentally exhuasted and constantly tearful of course but so what?  Nikki is by his side every day. They have both missed 2 months of their course. Not really an issue for Luke but Nikki has missed a vital dance model. I went to Preston hoping I could be some support to her but left feeling that she knows she's ultimately on her own however many friends and family try to support her. I felt that when Sonny was born. The help is there, plentiful, but sometimes resorting to solitude is the way to cope.
I can't look at photos, listen to songs at the moment. If I do I break down. Rob is my rock. He has done so much. Jim and his family have helped too aswell as Janny. Thankgod for them all.

I want to be with my brother. I can't. I haven't drunk since Sunday. Was beginning to rely a bit too much again. Not celebrating my 30th next week. Unfortunately Rob is training that day. Looks like I wont be able to get back to Luke until a week today which seems such a long time. I know he'll never remember the week I spent with him but I will never forget it.
It will haunt me, it was terrifying and upsetting but amidst all that he made me laugh with one thing he said earlier last week and it still makes me smile now.
Nikki and I went in one morning and he was very confused. He was sure that we were a family a super powers and totally worried that he'd revealed his power to one of the nurses. I tried to calm him and said I'd ask if he wanted but he firmly said not to. Luke is very into Heroes and a trekkie etc. I told him gently that we weren't a family of super-powers, we were a disfunctional family, yes!, but sadly no super powers. Boo!

Going round and round in my pessimistic head that tale being told at his funeral.  There, it's been said. The F word. Probably very unhelpful to think in that way but then what I saw last week will haunt me, like I said.

One day, hopefully, I will be back on form. The world will have stopped spinning slightly askew for our family and I will be able to write my usual crap. Maybe I'm not that person anymore though either.

From now on i'm stopping open posts and making it neighbourhood, freinds and family only. I have been doing so that local people can read Luke's updates but now that people know the situation I'm sure they can find out some other way.

Luke had a seizure in the night, went back to HDU and is back on a ventilator. Totally sedated. He has fluid around his  brain which they need to remove and then pump full of anti biotics. The next 48 hours are crucial.

Dad revealed his fear that Luke will be permanently disabled. After caring for him for 4 days on and off I can't imagine ever seeing Luke again. Not the Luke I've known for 27 years anyway.

Just got back from Preston. Luke deteriorated from the time I got there Weds until today, he had a lumbar puncture and was back on  morphine. I can't describe what the past days have been like so I won't try.
It was confirmed on my way home that Luke has contracted Meningitis.

I don't really know what to say. Im just letting people who care, know. I've come home for Mother's day but hope to get back in a few days.

Carol King's 'So Far Away', keeps running around my head.

='

Any minute now, my ship is coming in
I'll keep checking the horizon
I'll stand on the bow, feel the waves come crashing
Come crashing down, down, down, on me

And you say, be still my love
Open up your heart
Let the light shine in
But don't you understand
I already have a plan
I'm waiting for my real life to begin

When I awoke today, suddenly nothing happened
But in my dreams, I slew the dragon
And down this beaten path, and up this cobbled lane
I'm walking in my old footsteps, once again
And you say, just be here now
Forget about the past, your mask is wearing thin
Let me throw one more dice
I know that I can win
I'm waiting for my real life to begin

Any minute now, my ship is coming in
I’ll keep checking the horizon
And I'll check my machine, there's sure to be that call
It's gonna happen soon, soon, soon
It's just that times are lean

And you say, be still my love
Open up your heart, let the light shine in
Don't you understand
I already have a plan
I'm waiting for my real life to begin

Went to see Luke on Sat with Rob,  we took nothing with us, expecting to come home the same night but I couldnt leave. We stayed overnight.  To say I was shocked is an understatement.  I can't stop crying for Luke, for Nikki, for my mum and dad. I won't go on but  this song is for them.
Luke, I love you and if I could move temporarily to Preston, which believe me I have tried to work out a way and can't, then I would.
Nikki, I love you too. For what you're doing for my brother. For being so strong. For keeping on keeping on.
We will see you Thurs.

Been a funny old day. It's Jess, my cousin's birthday, I finally some proper posh bottle with silicone not latex teats and Sonny took to them no problem. Sony had his first feed of babyrice and carrot. I made enough for about 3 batches (I thought!) and he scoffed the lot! Proud day for my boy, many photos to follow but I thought I'd just thought I'd tell all my friends that ..

95% of Luke's tumour has been removed! He's come through surgery. He's going to be kept sedated over night. The docs say that the tumour has quite possibly always been there.
Look's like everything's going to be peachy.

NOW, 2008 can begin for me!

:)

Luke is having the second operation on his brain tumour tomorrow to try and remove more of it.
Please more healthy cyber vibes for the operation. He sent me a photo on his phone of his big belly and puffed up face from the steroids. I gota tell you, I've had a skinny brother my whole life, it made me blub a little, but that's not hard at the moment if anything concerns Luke.
He will then have to have radation which terrifies me and makes me feel sick. Altogether I feeI have been like a scared little girl throughout the whole thing. He sent me a text yesterday saying he could do with  hug from his big sister. Well, you can imagine...

I can't sleep again. I was up til 2.30am this morning and I anticipate another late one. I'm exhausted but my mind races the moment hits the pillow.

Moxie send some reiki healing down to Preston please :)

Ok, with a little help from Rob actually reading the instructions (do you ever???) and actual manipulation. It takes two baby, I went for a little stroll with Sonny in my sling with I've had for a few months and was debating selling again but I really wanted it to be a success. I can't wait for him to be on my back but I think that will be a while yet from the look of the age of the child in the photo in the instructions.
I only went to post a parcel and deliver a congratulations package to Kate and Trav on the birth of brand new baby Spencer. It was totally comfortable in that no one place on my torso ached but boy I was f**cked when I got home. It's all up hill on the way home and not being the fittest person I was a bit pooped. PLus Sonny and I kept bashing heads a bit so we're gona have to work out the dynamics slightly. I couldn't do a long walk unless it was flat! But it was lovely for Sonny to be upright, as he is still in his pram, lying flat as we wait for a special buggy with added support. Not much fun for him just seeing the sky and random faces. He was really grumpy, and has been for a few weeks.. He has had 2, even 3 molars coming through and tye have bothered him 100x more than his mouth surgery! Amazing.

Sorreeding is a joint y, more bot bot pics too, but he ALMOST did it so I flashing away. Feeding has become a joint effort, one feeding  , one with camera.
I know I've a lot of Sonny today so I managed to get two pics of the the girls. Later I will dedicate one to Tommy as I always feel he gets left out a bit.

Sospot

Stinky boot after a hard day at nursery

Bart's Hand (with added finger)