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...
Tuesday 27 September 2011
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!
So much snot!
Friday 23 September 2011
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!!
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!!
Thursday 9 June 2011
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....
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....
Saturday 4 June 2011
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.
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.
Wednesday 4 May 2011
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.
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.
Tuesday 26 April 2011
Happiness is...
Emily playing with a toy the way it is supposed to be played with. She has figured out something and looks so pleased with herself.
Such a simple thing that most parents can take for granted. For us a milestone!
Such a simple thing that most parents can take for granted. For us a milestone!
Monday 25 April 2011
Tired
tired of sleepless nights
tired of the screaming
tired of fighting to get food into the girl
tired of trying to get the help we need
tired of being tired
tired...so fucking tired of retts
never tired of the smile, the kiss, the laughter....
...that's what makes it so damn hard....
tired of the screaming
tired of fighting to get food into the girl
tired of trying to get the help we need
tired of being tired
tired...so fucking tired of retts
never tired of the smile, the kiss, the laughter....
...that's what makes it so damn hard....
Thursday 21 April 2011
Feeding: method as of April 2011 (subject to immediate change at any time)
Ingrediants:
1 cup, with soft spout
1 long scarf
1 catch all plastic bib
1 large waterproof apron
1 hair band
1lap
1 girl
Method:
Prepare the food (at the moment only sweet foods like fruit drinks, yogurts, flavoured milk)
Add the supplements - powder or liquid
Ignore the impatient tantrum because it is taking too long
Place the girl on the lap
Tie the hair back with the hair band
Tie the long scarf around the waist and both hands of the girl
Place the bib around neck of the girl
Cover the girl and your legs with the long apron
Hold the girls head up (some strength may be required here)
Move cup towards the girl whilst she squirms and tries to move head away
Retie the scarf around the arms a bit tighter this time
Pick up the long apron from the floor
Try to get the spout of the cup into the closed mouth of the squirming girl
Success... if the tatse is acceptable then the girl will drink a few mouthfulls at a time. If not then ignore the tantrums as ou head off to the kitchen to make something else
Repeat the above steps several times (including the occassional picking up off the floor of the girl because she has squirmed so much and slid of the lap)
When cup is finished the girl may or maynot require more - more tantrums may be experienced
1 cup, with soft spout
1 long scarf
1 catch all plastic bib
1 large waterproof apron
1 hair band
1lap
1 girl
Method:
Prepare the food (at the moment only sweet foods like fruit drinks, yogurts, flavoured milk)
Add the supplements - powder or liquid
Ignore the impatient tantrum because it is taking too long
Place the girl on the lap
Tie the hair back with the hair band
Tie the long scarf around the waist and both hands of the girl
Place the bib around neck of the girl
Cover the girl and your legs with the long apron
Hold the girls head up (some strength may be required here)
Move cup towards the girl whilst she squirms and tries to move head away
Retie the scarf around the arms a bit tighter this time
Pick up the long apron from the floor
Try to get the spout of the cup into the closed mouth of the squirming girl
Success... if the tatse is acceptable then the girl will drink a few mouthfulls at a time. If not then ignore the tantrums as ou head off to the kitchen to make something else
Repeat the above steps several times (including the occassional picking up off the floor of the girl because she has squirmed so much and slid of the lap)
When cup is finished the girl may or maynot require more - more tantrums may be experienced
Three
Ahh well the sleep from the previous night was certainly not repeated last night. Emily eventually fell asleep after 11pm, woke up screaming at just after 3am and didn't fall asleep again to 07:30. spent the night moving around in our bed, crying, whinging and punching us....stressed to fuck!
It used to work putting her back into her own room, she would stay in her bed and cry herself to sleep. Now she gets straight out of bed and kicks and bangs the door, her knuckles were bleeeding yesterday after one bedroom tantrum.
seriously concsidering putting the cot bars back on....will need to get them and the surrounding walls padded though...
I know its a faze, she picks up and drops these behaviours usually quite quick...however during the long night, with no sleep, with tempers rising and stress levels at defcon 5 its an absolute nightmare....
Made worse by the fact that no how much you shout at her, when she has eventually settled she will always respond with a gorgeous, cheeky smile and a kiss....
...how guilty does that make me feel?
It used to work putting her back into her own room, she would stay in her bed and cry herself to sleep. Now she gets straight out of bed and kicks and bangs the door, her knuckles were bleeeding yesterday after one bedroom tantrum.
seriously concsidering putting the cot bars back on....will need to get them and the surrounding walls padded though...
I know its a faze, she picks up and drops these behaviours usually quite quick...however during the long night, with no sleep, with tempers rising and stress levels at defcon 5 its an absolute nightmare....
Made worse by the fact that no how much you shout at her, when she has eventually settled she will always respond with a gorgeous, cheeky smile and a kiss....
...how guilty does that make me feel?
Wednesday 20 April 2011
Two
Emily slept well last night, which meant we kind of slept well too. She ended up in our bed which caused a kind of broken nature to the sleep. Everytime I turned my back on her (she was in the middle between us) she seemed to sense it and sat up, punched either one of us and moaned until I turned around and snuggled her...then she fell fast asleep again in a blink of an eye.....whilst i took slightly longer!
In the beginning
Emily was born on 4th april 2007. She was a lazy girl who was in no hurry to enter the world, eventually she was given a helpful yank by a man in a mask with a pair of forceps in his hands. She was a perfect baby, sleeping, eating and very calm. full of laughs and giggles. Now we realise that the signs were already there. We were ignorant to retts in those days....how I wish I could say the same now.
She had a few words at a very early age but never really played with her toys the way we would have expected. Toys were carried around, usually in her mouth when she was crawling, or thrown around. she took a while to learn to crawl but when she did she soon became an expert. She had so many different ways of crawling. She could go forwards, backwards, sidewards, like a commando on her elbows, like a frog hoping, fast, slow, and round and round and round and round. Another sign!
She was again late in walking, had no need to I suppose what with so many different and inventive ways of getting around. At first we put the sleightly awkward gait down to being a new skill but it never really changed. She had, and still does have this funny little bum wiggle when she runs around, sometimes a bit stiff, sometimes a bit clumsy, tripping over thin air or bouncing off walls.
She had a few words at a very early age but never really played with her toys the way we would have expected. Toys were carried around, usually in her mouth when she was crawling, or thrown around. she took a while to learn to crawl but when she did she soon became an expert. She had so many different ways of crawling. She could go forwards, backwards, sidewards, like a commando on her elbows, like a frog hoping, fast, slow, and round and round and round and round. Another sign!
She was again late in walking, had no need to I suppose what with so many different and inventive ways of getting around. At first we put the sleightly awkward gait down to being a new skill but it never really changed. She had, and still does have this funny little bum wiggle when she runs around, sometimes a bit stiff, sometimes a bit clumsy, tripping over thin air or bouncing off walls.
One
This is the first post. I've been meaning to start a blog as a means of getting things of my chest. So be prepared for some rambling, ranting and no doubt sometimes abusive profanity.
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