Ahoy there melbourne!

hi guys
eli here...mum says she is sorry for not letting me onto the computer for a while...i have been 'resting'...
unfortunately after a positive start after my grommets were put in, i started to get a bit crook again on tuesday and mum and dad thought it would be safer to head back to melbourne which is what we did on wednesday...
We got back up here on wednesday arvo and i must admit i wasnt feeling really well. Dr steve did some stuff, and we were admitted to hospital on wed nite for 'observations' coz mum reckons i was doing some really weird stuff with my eyes and i was spending lots of time holding my head. Mum said she thought it was my ears playing up again and we would be safer getting them checked out again.
Dr steve saw my eye episodes and thought it might be good to get the brain people to check me out too.
Dr 'brain' came around on thursday and said that he thought i might have been having seizures - possibly due to all the medicine i have been having...also, i had to have a big brain x-ray...something called an mri just to try and work out whether i had anything happening in my head. The dr's also ordered a big needle in my back to suck some juice out of my spine - they call that a lumber puncture to run some tests on that stuff to see if they could grow ANY bugs. To date NOTHING has grown so it has been a bit frustrating for everyone.
I had a bit of a fever for about 36 hours, but it got better yesterday lunch time. Im still REALLY REALLY sleepy and have my eyes closed up to 20 hours in 24. Im not eating huge amounts and have just started puking the stuff i have eaten all up...i caught mum off guard and got her a gooden...it was funny!
So i had the brain tests on friday morning (in between sleeps) and the results of that came back saying i wasnt having any fits/seizures which we were all relieved to hear about. I was also put to sleep on fri arvo to have the brain scan and big needle to collect juice late on friday afternoon. Early indications are that they think my brain is ok, but still cannot explain why i feel so lethargic. All my blood results are showing that there is definitely something going on, as my white cells have shot up to 27 which means there is a cootie in me somewhere. The other pretty big thing happening is that my liver is not traveling so well. The dr's have done heaps of tests that are showing that my liver is finding it pretty tough to be normal at the moment with some of the results showing that it needs to have some medicine to try and make it better.
No one really knows what is happening with me, but all i know is that im feeling pretty flat and am not doing too much except for resting and giving the staff heaps coz they are poking me HEAPS with needles (coz my noodles are out!)...ive got little holes in me EVERYWHERE! mum reckons im so brave and she tells me all the time that i am MUCH braver than what she would be. Secretly i know that mum and dad just want something to 'grow' so the dr's can get on and make me feel better. But at this point NOTHING is growing at all.
From what i can gather, there are two trains of thought...one is that it is an infection of sorts - maybe a viral infection, and the other is all the medicines im taking might be having an impact on me because i have been on them for a long time. We are hoping something shows up soon so i can feel better. I heard Dr Rachel, Dr Matthias and Dr Keith say that it really is a process of elimination. We are really not sure how long we will be here...it will really depend on how im feeling. Cant believe its been almost 5 days already! Dad reckons we should buy shares in this place!
a huge thanks to aunty jen, cousin casey and neighbour deb for visiting my mum and dad...i know mum was really happy to see them. Also, a big thanks to aunty hayley who "ALWAYS" tidys up mums things thats she starts and for looking after bodsie for us. She helps us out HEAPS with just the little things...
also, once again to all of you who constantly message and let us know that you are thinking of us...just know that we think of all of you too...more than you will probably know.
Mum is excited and sad all at the same time coz she has met another family from 'home'. She says it feels really nice to talk about 'home' as well as sharing some experiences...she feels sad too because she says no family should have to go through what we go through no matter where they are from...they are ace though.
For those that ask about the twins, from what we understand they are doing really well and last we heard they are still at home going strong.
There is another little poppet that we met who also has jmml. Her name is jessica and she was the first of all of us to be diagnosed. She is an absolute stunner and is about 17 months old now...mum said we will try and get a picture of her...it would be nice to get a photo of ALL of us who have jmml, just because it is so rare and hugely weird that we have the 4 in a million all at the same time.
anyways...i am getting really tired and dad is also looking for a bit of a lie down...dad reckons im getting really good at giving cuddles in bed!
anyhoo...love to all and keep the messages coming.
we will try and keep you posted.
luv to all
eli
xox