Found this site again

found this. forgot I'd started a blog over 7, SEVEN, years ago mainly to do with Emily and rett syndrome....obviously blogging is not something I'm particularly good at...ahem

Lot of things have happened in those years, Emily was joined by her Brother Oscar...who will be 7 in a few weeks.

We still live with rett, obviously, no signs of cure or improvements yet, though some research is heading in the right direction.

Emily is still mobile, which is great. She still can't speak but we have a eyegaze computer that she is learning to use.

Health wise she is doing great. Recent ecg,eeg have all been ok. She eats well and is still a cheeky bugger at times.

Eating

Emily is now trying some solid food and eating from a spoon again. Just little bits at a time, we don't want to push her too much. Still drinking most of her meals from cups but she is willing to occassionally try mush and solids. This may not seem like much but it is a big step for us. Her weight is still gaining...trying to break the 18kg barrier next....and she has filled out nicely. We are hoping that she doesn't take another downturn..... She has so much more energy and and is so much more her old self when she is eating well.
gotta keep fattening her up for christmas....and beyond...

Tantrums

Emily has decided we need some more tanturms in our lives. They come from nowhere (although suspicion is falling on food - lack of, type of, consistancy of...whatever.... and the possibilty she may have picked up a bug somewhere....both culprits in the past) and thankfully don't last too long. However they sure are packed full of energy, snot, self harm, biting, hiting, more snot, screams (loud!),tears and more snot.
So much snot!

Time

Really must not be so lazy and post more on here....lots happening with Emily, at work and the impending arrival of number one son..who is being an awkward little toerag already and not lying properly ready for delivery....so maybe S will be taken into hosp next week for a section.
What Emily will make of the new arrival is any ones guess. Hope she doesn't treat him like the rest of her toys..that is pick up and slobber over before throwing half way across the room. I'm sure she will be fine. I hope she will be fine! We will have to watch out for her arms which occasionally she can't keep control of and come flying out making contact with, usually, someones face (although I do believe sometimes the accuracy of her strikes may have some deliberate intention behind them....not vicious or malicious, just born of frustration).
Well time will tell and I will endeavour to squeeze some posts in here whenever i manage to get a few minutes..so sometime next year no doubt!!

good times

Emily eating...or at least still drinking her food
Emily sleeping..in her own bed..
Emily punching less....not stopped but less...
Emily has a fat tummy!
Emily looked at me and said "dada"....don't care if it was intentional or not, if it was just random sounds at the right time....i'm having that, thanks very much :)
Emily has energy and is full of smiles
Tantrums are few, short and far between

this may all change tommorrow or last for weeks....making the most of it....

Eating

Emily has gained 3Kg. Still on a liquid diet, she will only drink from her cups, won't eat from a spoon or finger food. Big difference is she not only eats from me but from her mum too. So when I'm at work I know she is taking food. Also the struggle, the fight, to get her to drink from her cup is at the moment gone. She happily sits and drinks now. Peace at meal times.
How long this will last only emily knows. She may change tommorrow, or next year or never.
So the plan.... bulk her up as much as we can, love seeing her little fat tum, and hope if she takes a feeding dip again she will have enough weight to help her through it.

Rocky

Emily has become a prize fighter, though what the prize may be we are yet to discover. She has been punching things, walls, doors, toys etc for some time now. It's her longest running phase. One we hoped she would soon have grown out of, alas that has not happened, if anything it's worse now. Often her knucles are bruised, sometimes even cut and bleeding. We have tried various gloves to help minimise the damage to her hands. At the moment she sports a pair of fingerless cycling gloves with bubble rap stuffed down the inside. Needs must and we are hoping the OT departments can come up with something better.
She now has taken to punching us, sometimes in anger but mostly its her uncontrolable retts reflex actions...still hurts when you get a fist in your eye though! Occassionaly she has lashed out at others too...we really hope this is a very, very short lived phase.
She must be so frustrated, its hard to comprehend. Sometimes a hit is the only way she can express herself. That tied with not understanding that our pain thresholds aren't as great as hers can lead to some stressfull (and painfull) times all round.