The following summarises the main events that happened between April and May 2006:
SATURDAY 1st APRIL 2006
Emma has worn her implant all day and been turning consistently to 'come here' and 'come on'. Her eyes move to the correct jigsaw piece when asked where the blue/red/green one is.
She has walked towards both mummy and daddy whilst holding one of their hands and has been quite happy to do so. She has been very affectionate and allowed both mummy and daddy to cuddle her.
She actually placed her beaker on the table once she had finished it instead of throwing it!
She doesn't like stories being read to her yet and prefers to sit on her own with a book and look at the pictures.
She waited patiently for mummy to stack the cups before knocking them down and she even managed to open the door that hides the dog on her pop-up toy completely on her own.
WEDNESDAY 5th APRIL 2006
Emma was very grizzly at the Children's Centre for the first hour and hated being made to sit in the chair. The second hour she was fine and so long as she had her bottle she was happy to sit. She picked out a picture of a cat and started making 'miaow' sounds. She has made quite a few new sounds, including 'brum', 'ba' and 'gra'.
Her eyes have been deviating to the left quite significantly - I wonder if it has something to do with her trying to understand and produce speech, or maybe something to do with learning to walk.
She turned to daddy calling her name even when the TV was on.
FRIDAY 7th APRIL 2006
Emma spent the morning at Nursery and actually made some eye contact with a few of the children. She lay on mummy's lap for a good 20 minutes on the return home. Her implant keeps cutting out so Great Ormond Street Hospital have been called for replacements (again!).
She pulled her implant off a few times but actually tried to replace the coil herself three times.
She has willingly taken a few aided steps and is very happy about moving between furniture unaided now.
She managed to eat some banana without gagging or choking.
WEDNESDAY 12th APRIL 2006
She was seen by the OT's today who have said that her fine motor skills are on a par with her cognitive ability, i.e. those of a 12 month old. She rolled a ball to them once and was very quick to figure out how a toy worked. She has worn the implant all day (bar when the coil cable broke and it needed replacing!).
We have been advised to use sensory toys with her and to encourage her to undress herself. She managed to take her tights and trousers off pretty well on her own with only minimal assistance.
She has really developed an interest in jigsaw puzzles and the stacking rings and is now playing with them for up to 5 minutes at a time.
She managed a Mini Chocolate Egg without any problems!
MONDAY 17th APRIL 2006
Emma has been grizzly most of the day and was given some Paracetamol in the end to try and make her feel more content - I think it's teething as she is grinding her teeth lots and chewing on everything she can find.
She has refused to wear her implant pretty much all day and has been pulling it off the moment it is replaced.
She has mostly been playing on her own and not wanted to interact with anyone.
She has wanted to be held lots today.
THURSDAY 20th APRIL 2006
Emma started another morning at Nursery today but has been pulling her implant off loads and uncooperative. With it on, however, she has been very vocal and been making some nice new sounds - 'ra ra ra', 'ba ba ba'.
She is still grinding her teeth lots and wanting cuddles.
She managed to stack 2 play cups whilst in the bath four times, all on her own and really persevered with it for at least 10 minutes.
WEDNESDAY 26th APRIL 2006
Emma put out her hand when mummy asked for it (without using any visual prompts). She also banged her feet on the floor when daddy was reading an action book with her that asked that she 'stamp her feet'.
She went to the children's centre where she sat on a chair without any support and engaged in an activity with another little boy for a good 5 minutes
She put all the stacking cups inside each other in the correct order.
She managed to take a few unaided steps. Her teeth still seem to be aggravating her - at least I hope it's her teeth causing her problems!
She claps at herself when she manages to put the correct jigsaw piece into the hole.
She pulled her coil off her head several times when told 'No!' about something!
She seems to be understanding 'up' as she goes straight upstairs on hearing it.
Monday, 10 November 2008
March - April 2006 (Catch-Up)
WEDNESDAY 1st MARCH 2006
Emma seems to understand the word 'drink' as she turned to look for it when mummy asked her where it was.
She went to fetch a jigsaw shape from across the room that she had cast and handed it to mummy.
FRIDAY 2nd MARCH 2006
Emm spent the morning at Nursery where the other children try playing with her and will hand her toys which she takes, but she is not interested in interacting with them and is only noticing the toys.
She has become very aware of her actions and will turn around to see if anyone is watching her before doing something 'naughty'.
She stood unaided for just over 10 seconds as mummy was trying to sort out her cochlear implant.
SATURDAY 3rd MARCH 2006
Emma kisses the little dog that pops up out of her toy very tenderly!
She has definitely been experimenting with sounds today in a musical way! she said what sounded like 'more', 'mum' and 'green' ('muuur', 'mam' and 'greee') in context but could still have been a fluke although she was given lots of encouragement and praise.
MONDAY 6th MARCH 2006
She is definitely responding to her name and will go off to look for the person who called it when they are in another room.
She has started shaking her head when she is being taken somewhere she doesn't want to go. She recognises the milk carton and biscout tin and will reach for them.
She has started to attempt to do the pop-up toy her self although gives up after a few minutes and takes mummy's hand to 'say' she needs help.
TUESDAY 7th MARCH 2006
Emma sounded very ill and 'chesty', and looked very tired when mummy collected her from Respite this afternoon.
she definitely recognises her name and understands 'drink' as she immediately reached out for her beaker when mummy asked her if she wanted a drink.
She has not been making her usual high-pitch noises and has started babbling a little more.
WEDNESDAY 8th MARCH 2006
Emma said 'mum mum' and 'ya ya ya' whilst Judy was here as if engaging in conversation with her. She also said what sounded like 'mine' whilst holding a jigsaw piece up to her chest.
She stayed on-task with several activities that Judy brought for her and made good eye contact.
Mummy tickled her with a baby wipe and she then picked it up and put it to her face trying to tickle herself again.
She was seen by the GP who assured us that she doesn't have an infection but has prescribed a strong moisturiser for her skin as it is incredibly dry at the moment.
She managed to drink from her beaker this afternoon - only half, but at least she managed.
SATURDAY 11th MARCH 2006
Emma has started to distinguish between mummy and daddy's voice and will turn to the right speaker.
TUESDAY 14th MARCH 2006
Emma hasn't had the chance to be very active today as most of the day was spent either in a car seat or in her pushchair as she was seen by the Neurosurgeon in Oxford. He told us that we need to watch her development and should we feel at any point that she should stop progressing or starts regressing that we need to be vigilant as it could be a sign of a shunt malfunction.
THURSDAY 16th MARCH 2006
Emma spent the day at Respite where she has been chasing and kissing another little boy. She keeps taking her coil off her head and then passing it to an adult to sort - almost as if for attention.
She waved at her reflection in the mirror and thought it was funny.
She has been drinking more willingly from her beaker today.
SUNDAY 19th MARCH 2006
Emma goes looking for the person who has called her name from another room almost instantly. She has started taking her coil off her head when she is being told off! She passed her beaker to mummy when asked to and when there was quite a lot of background noise.
She smiles when smiled at and her eye contact has been okay. She is reaching out when she wants to be picked up.
When she is told 'No!' she passes the object she shouldn't have up to the person for them to take away from her!
She is anticipating 'Round and Round the Garden' being done on her belly and giggles excitedly.
TUESDAY 21st MARCH 2006
Emma has started showing signs of jealousy and didn't like a carer at Respite holding another little boy.
She ate her sandwich in small pieces rather than shoving it all in her mouth and choking herself if asked to 'eat nicely'. She has worn her implant today but been pulling it off loads.
She sat very attentively and watched 'The Tweenies' on TV this afternoon for a good 10 minutes.
She has been cruising everywhere with support from furniture, walls and cupboards. She is cimbing up onto furniture all the time. She even stood unaided for a few seconds.
She will pass cutlery into her left hand and then throw them but it they are in her right they never get chucked!
FRIDAY 24th MARCH 2006
Judy went to visit her at Nursery this morning and said that although she is happy that she is attending she needs a lot more support as the staff there are not really able to give her the amount of attention that she needs.
She allowed the Nursery staff to paint the palms of her hands and help her make handprints without any fuss or bother at all.
She sat unaided at a table in a normal chair and was very steady.
She is still pulling the implant out a lot.
She is pushing the strategically placed jigsaw pieces into their correct slots and getting very happy about it. She lets you know if she likes something (toys, people, food etc) by smiling at it. If she cries or ignores it then she doesn't like it!
Although she is turning to her name consistently now she will obviously ignore you if she knows she is in trouble!
MONDAY 27th MARCH 2006
Emma was seen by Gill this afternoon but was too tired to cooperate. She loves the praise she gets when pushing the jigsaw pieces into the right slots. She took an unaided step from the radiator to the table in the kitchen and is far more confident about moving in between furniture around the house. She has been taking sips from her beaker well. She seemed to make a 'helllllooooooo ' sound when the implant was switched on for her.
She doesn't like being 'made' to do anything that she doesn't want to do and gets very upset if made to sit at the table and eat.
Her eyes have started to deviate again quite a bit. She didn't like daddy stroking the dog and pushed him out of the way so that she could have a cuddle with daddy instead!
WEDNESDAY 31st MARCH 2006
Emma seems to be talking more to objects. She took the rings off the stacking game one at a time and placed them on the floor nicely. She walked around the kitchen holding onto mummy's hands for support and even stood alone for a few seconds. She has been trying to get Chester to kiss her and really enjoys making kissing sounds!
Emma seems to understand the word 'drink' as she turned to look for it when mummy asked her where it was.
She went to fetch a jigsaw shape from across the room that she had cast and handed it to mummy.
FRIDAY 2nd MARCH 2006
Emm spent the morning at Nursery where the other children try playing with her and will hand her toys which she takes, but she is not interested in interacting with them and is only noticing the toys.
She has become very aware of her actions and will turn around to see if anyone is watching her before doing something 'naughty'.
She stood unaided for just over 10 seconds as mummy was trying to sort out her cochlear implant.
SATURDAY 3rd MARCH 2006
Emma kisses the little dog that pops up out of her toy very tenderly!
She has definitely been experimenting with sounds today in a musical way! she said what sounded like 'more', 'mum' and 'green' ('muuur', 'mam' and 'greee') in context but could still have been a fluke although she was given lots of encouragement and praise.
MONDAY 6th MARCH 2006
She is definitely responding to her name and will go off to look for the person who called it when they are in another room.
She has started shaking her head when she is being taken somewhere she doesn't want to go. She recognises the milk carton and biscout tin and will reach for them.
She has started to attempt to do the pop-up toy her self although gives up after a few minutes and takes mummy's hand to 'say' she needs help.
TUESDAY 7th MARCH 2006
Emma sounded very ill and 'chesty', and looked very tired when mummy collected her from Respite this afternoon.
she definitely recognises her name and understands 'drink' as she immediately reached out for her beaker when mummy asked her if she wanted a drink.
She has not been making her usual high-pitch noises and has started babbling a little more.
WEDNESDAY 8th MARCH 2006
Emma said 'mum mum' and 'ya ya ya' whilst Judy was here as if engaging in conversation with her. She also said what sounded like 'mine' whilst holding a jigsaw piece up to her chest.
She stayed on-task with several activities that Judy brought for her and made good eye contact.
Mummy tickled her with a baby wipe and she then picked it up and put it to her face trying to tickle herself again.
She was seen by the GP who assured us that she doesn't have an infection but has prescribed a strong moisturiser for her skin as it is incredibly dry at the moment.
She managed to drink from her beaker this afternoon - only half, but at least she managed.
SATURDAY 11th MARCH 2006
Emma has started to distinguish between mummy and daddy's voice and will turn to the right speaker.
TUESDAY 14th MARCH 2006
Emma hasn't had the chance to be very active today as most of the day was spent either in a car seat or in her pushchair as she was seen by the Neurosurgeon in Oxford. He told us that we need to watch her development and should we feel at any point that she should stop progressing or starts regressing that we need to be vigilant as it could be a sign of a shunt malfunction.
THURSDAY 16th MARCH 2006
Emma spent the day at Respite where she has been chasing and kissing another little boy. She keeps taking her coil off her head and then passing it to an adult to sort - almost as if for attention.
She waved at her reflection in the mirror and thought it was funny.
She has been drinking more willingly from her beaker today.
SUNDAY 19th MARCH 2006
Emma goes looking for the person who has called her name from another room almost instantly. She has started taking her coil off her head when she is being told off! She passed her beaker to mummy when asked to and when there was quite a lot of background noise.
She smiles when smiled at and her eye contact has been okay. She is reaching out when she wants to be picked up.
When she is told 'No!' she passes the object she shouldn't have up to the person for them to take away from her!
She is anticipating 'Round and Round the Garden' being done on her belly and giggles excitedly.
TUESDAY 21st MARCH 2006
Emma has started showing signs of jealousy and didn't like a carer at Respite holding another little boy.
She ate her sandwich in small pieces rather than shoving it all in her mouth and choking herself if asked to 'eat nicely'. She has worn her implant today but been pulling it off loads.
She sat very attentively and watched 'The Tweenies' on TV this afternoon for a good 10 minutes.
She has been cruising everywhere with support from furniture, walls and cupboards. She is cimbing up onto furniture all the time. She even stood unaided for a few seconds.
She will pass cutlery into her left hand and then throw them but it they are in her right they never get chucked!
FRIDAY 24th MARCH 2006
Judy went to visit her at Nursery this morning and said that although she is happy that she is attending she needs a lot more support as the staff there are not really able to give her the amount of attention that she needs.
She allowed the Nursery staff to paint the palms of her hands and help her make handprints without any fuss or bother at all.
She sat unaided at a table in a normal chair and was very steady.
She is still pulling the implant out a lot.
She is pushing the strategically placed jigsaw pieces into their correct slots and getting very happy about it. She lets you know if she likes something (toys, people, food etc) by smiling at it. If she cries or ignores it then she doesn't like it!
Although she is turning to her name consistently now she will obviously ignore you if she knows she is in trouble!
MONDAY 27th MARCH 2006
Emma was seen by Gill this afternoon but was too tired to cooperate. She loves the praise she gets when pushing the jigsaw pieces into the right slots. She took an unaided step from the radiator to the table in the kitchen and is far more confident about moving in between furniture around the house. She has been taking sips from her beaker well. She seemed to make a 'helllllooooooo ' sound when the implant was switched on for her.
She doesn't like being 'made' to do anything that she doesn't want to do and gets very upset if made to sit at the table and eat.
Her eyes have started to deviate again quite a bit. She didn't like daddy stroking the dog and pushed him out of the way so that she could have a cuddle with daddy instead!
WEDNESDAY 31st MARCH 2006
Emma seems to be talking more to objects. She took the rings off the stacking game one at a time and placed them on the floor nicely. She walked around the kitchen holding onto mummy's hands for support and even stood alone for a few seconds. She has been trying to get Chester to kiss her and really enjoys making kissing sounds!
Wednesday, 5 November 2008
February - March 2006 (Catch-Up)
The following is a summary of the significant events that occurred in Emma's life in February 2006:
WEDNESDAY 1st FEBRUARY 2006
Emma visited a day nursery today where she will hopefully start attending for a Friday morning. She was also taken to the children's centre group where the staff are supposedly trained to deal with children's specific needs - Emma had them running around all after her and she was completely uncooperative as she was busy testing boundaries. Plus, she is very wary around adults anyway as she believes they are going to harm her.
The staff there will be focusing on her walking, general awareness and interaction skills and will also be trying to discourage her casting tendency!
THURSDAY 2nd FEBRUARY 2006
Emma has a strange rash on her wrists and lower back.
She is definitely trying to gain her independence and make her mark - she has full-on tantrums and really has some impressive outbursts!
She heard the vacuum cleaner and went looking for it and also turned to find her musical butterfly toy when it was turned on.
FRIDAY 3rd FEBRUARY 2006
She is becoming extremely frustrated and angry as she is unable to communicate her needs or what she wants.
When the coil came off she reached for her head as if to say 'Where is it? I can't hear!'. She got very upset until it was replaced.
She ahs really been in her own little world today and not been interacting much with anyone at all.
Judy (TASS) called to say that Emma's statement of special needs will be ready at Easter. The day nursery has accepted her and she will be doing a few taster sessions before starting properly on the 24th - Judy says that support can be arranged for her.
SATURDAY 4th FEBRUARY 2006
Emma shook her head very purposefully and said 'na na' at the same time. She is enjoying turn-taking with toys and other objects and has been playing independently lots. I have just found out that the Pneumococcal Vaccine (Prevnar) will be readily available as og April this year - how gutting is that?! I am absolutely devastated.
SUNDAY 5th FEBRUARY 2006
Emma fell asleep with her implant on and then woke abruptly when a noise startled her - she got very upset and took ages to calm down.
She has been making some nice eye contact. She definitely understands 'no' and stops dead in her tracks for a few seconds before continuing anyway! She picked up a dog biscuit and threw it on the floor. Mummy said 'for Mummy' from behind her and she picked it up again and handed it to her.
Emma realy jumped when the vacuum cleaner was turned on in another room and went looking for it.
She has started to bounce a ball repeatedly and will shake and bang a range of toys to make noises. She seems to really love having access to sound!
MONDAY 6th FEBRUARY 2006
Emma did really well at Chatty Monkeys today and joined in with some of the games. She enjoyed sitting on mummy's lap and doing the actions for 'Row Row'.
Her implant has been cutting out all day and causing her great distress.
Amanda (OT) came round to fit a harness on Emma's Breezi chair to try and stop her climbing out and so far so good.
She found a coaster that had been hidden under the sofa (with her watching).
Emma didn't fall asleep until 8.45pm and is sounding very grizzly and ill.
TUESDAY 7th FEBRUARY 2006
Emma didn't do great at Physio today but mainly because she wanted to do her own thing and play with a particular toy. Her SAL session went well though and she interacted nicely with Helen and engaged in a few activities for about 5 minutes at a time.
The cable on her implant broke and needed replacing.
Ruth (HV) came and measured her head again but there has been no change in the circumference so that's good.
THURSDAY 9th FEBRUARY 2006
Emma started bouncing her body up and down as if dancing to music and she even started wiggling her bottom when up on all fours!
Her eyes have been deviating to the left lots and she keeps rubbing them - they are obviously causing her discomfort.
She has started having deeper baths and seems to enjoy them.
She took 3 steps to the table with mummy only supporting her waist with two fingers!
FRIDAY 10th FEBRUARY 2006
Judy saw Emma today and she did really well - she sat on mummy's lap for a good 5 minutes looking at a book, she worked out how to make a spinning top rotate after being shown a few times and she picked up a ball that had been rolled to her and threw it back!
She took a loaded spoon from her plate to eat and then passed it back to mummy nicely to reload.
Judy left a checklist that indicates that Emma is currently finctioning as a 12 month old. She also left a load of information and tips on how we can help her develop.
WEDNESDAY 15th FEBRUARY 2006
Emma spent 2 hours at the day nursery for a taster on her own and she actually sat with the other children whilst they sang and enjoyed some 'quiet time' in the TV room. She also spent the afternoon at the Children's Centre where she stuck a few pieces of paper onto some card and didn't attempt to eat all the pieces! She is casting 50% of the time.
She got very excited when she saw her reflection in the lounge mirror.
THURSDAY 16th FEBRUARY 2006
Emma was seen at GOSH for another MAPPING session and her electrodes were tweeked slightly. She has been very frustrated as she has been stuck in her pushchair for most of the day and been very bored. She is also getting very upset as she is unable to communicate what she wants.
She tried standing herself up from the floor. Her eye contact has not been good - only if she needs to make it in order to get something!
FRIDAY 17th FEBRUARY 2006
Emma spent the morning at day nursery and has been fine. She ate a pear and went through 3 bowls of fish pie and 2 bowls of custard - I am going to have to tell them that this is unacceptable! Emma doesn't realise when she is full and will just continue eating!
She has played nicely alongside other children with cause and effect toys. She got very distressed when her implant cut out and the staff were unable to sort it, but she soon perked up when mummy managed to fix it for her.
Her eyes have been rolling and deviating lots and we are beginning to think that it might be linked to tiredness, so we will be monitoring this to see if we can find a pattern.
Emma wriggled her hands out of mummy's when taking supported steps to try and do it independently and she managed one step - she will get there!
WEDNESDAY 22nd FEBRUARY 2008
Emma had a very restless night and kept waking in what seemed like pain. It could be due to bad nappy rash she has - she looks burnt bless her. Her eye contact is getting much better and she turns consistently everytime she hears a voice. she got very upset when mummy had to take the harness that holds her cochlear implant off her in order to change her clothes and tried putting it back on herself as she couldn't cope being without access to sound!
FRIDAY 24th FEBRUARY 2008
Emma spent the morning at Nursery as a proper session and apparently had a good time, although they did still feed her seconds! She is now turning constantly to her name and even went looking for mummy when her name was called from another room.
She took two independent steps holding on to her bottle for 'reassurance'. I am sure she will be walking within the year. Just cannot believe that we were told she would not be able to sit up let alone walk again. I am so very proud of her.
SUNDAY 26th FEBRUARY 2008
Emma nose-dived out of her cot this morning and has prompted us to seriously think about transferring her to a proper bed - who would have thought she would ever be in a normal bed?!
She has let daddy hold her hands to help her bang two plastic cups together and has stilled and turned to mummy singing and calling her name.
She has been climbing up and down of the settees in order to collect things that have been placed there for her to reach and she is far more controlled when coming down.
The cable on her processor broke (again!) and she became very distressed until it was replaced.
WEDNESDAY 1st FEBRUARY 2006
Emma visited a day nursery today where she will hopefully start attending for a Friday morning. She was also taken to the children's centre group where the staff are supposedly trained to deal with children's specific needs - Emma had them running around all after her and she was completely uncooperative as she was busy testing boundaries. Plus, she is very wary around adults anyway as she believes they are going to harm her.
The staff there will be focusing on her walking, general awareness and interaction skills and will also be trying to discourage her casting tendency!
THURSDAY 2nd FEBRUARY 2006
Emma has a strange rash on her wrists and lower back.
She is definitely trying to gain her independence and make her mark - she has full-on tantrums and really has some impressive outbursts!
She heard the vacuum cleaner and went looking for it and also turned to find her musical butterfly toy when it was turned on.
FRIDAY 3rd FEBRUARY 2006
She is becoming extremely frustrated and angry as she is unable to communicate her needs or what she wants.
When the coil came off she reached for her head as if to say 'Where is it? I can't hear!'. She got very upset until it was replaced.
She ahs really been in her own little world today and not been interacting much with anyone at all.
Judy (TASS) called to say that Emma's statement of special needs will be ready at Easter. The day nursery has accepted her and she will be doing a few taster sessions before starting properly on the 24th - Judy says that support can be arranged for her.
SATURDAY 4th FEBRUARY 2006
Emma shook her head very purposefully and said 'na na' at the same time. She is enjoying turn-taking with toys and other objects and has been playing independently lots. I have just found out that the Pneumococcal Vaccine (Prevnar) will be readily available as og April this year - how gutting is that?! I am absolutely devastated.
SUNDAY 5th FEBRUARY 2006
Emma fell asleep with her implant on and then woke abruptly when a noise startled her - she got very upset and took ages to calm down.
She has been making some nice eye contact. She definitely understands 'no' and stops dead in her tracks for a few seconds before continuing anyway! She picked up a dog biscuit and threw it on the floor. Mummy said 'for Mummy' from behind her and she picked it up again and handed it to her.
Emma realy jumped when the vacuum cleaner was turned on in another room and went looking for it.
She has started to bounce a ball repeatedly and will shake and bang a range of toys to make noises. She seems to really love having access to sound!
MONDAY 6th FEBRUARY 2006
Emma did really well at Chatty Monkeys today and joined in with some of the games. She enjoyed sitting on mummy's lap and doing the actions for 'Row Row'.
Her implant has been cutting out all day and causing her great distress.
Amanda (OT) came round to fit a harness on Emma's Breezi chair to try and stop her climbing out and so far so good.
She found a coaster that had been hidden under the sofa (with her watching).
Emma didn't fall asleep until 8.45pm and is sounding very grizzly and ill.
TUESDAY 7th FEBRUARY 2006
Emma didn't do great at Physio today but mainly because she wanted to do her own thing and play with a particular toy. Her SAL session went well though and she interacted nicely with Helen and engaged in a few activities for about 5 minutes at a time.
The cable on her implant broke and needed replacing.
Ruth (HV) came and measured her head again but there has been no change in the circumference so that's good.
THURSDAY 9th FEBRUARY 2006
Emma started bouncing her body up and down as if dancing to music and she even started wiggling her bottom when up on all fours!
Her eyes have been deviating to the left lots and she keeps rubbing them - they are obviously causing her discomfort.
She has started having deeper baths and seems to enjoy them.
She took 3 steps to the table with mummy only supporting her waist with two fingers!
FRIDAY 10th FEBRUARY 2006
Judy saw Emma today and she did really well - she sat on mummy's lap for a good 5 minutes looking at a book, she worked out how to make a spinning top rotate after being shown a few times and she picked up a ball that had been rolled to her and threw it back!
She took a loaded spoon from her plate to eat and then passed it back to mummy nicely to reload.
Judy left a checklist that indicates that Emma is currently finctioning as a 12 month old. She also left a load of information and tips on how we can help her develop.
WEDNESDAY 15th FEBRUARY 2006
Emma spent 2 hours at the day nursery for a taster on her own and she actually sat with the other children whilst they sang and enjoyed some 'quiet time' in the TV room. She also spent the afternoon at the Children's Centre where she stuck a few pieces of paper onto some card and didn't attempt to eat all the pieces! She is casting 50% of the time.
She got very excited when she saw her reflection in the lounge mirror.
THURSDAY 16th FEBRUARY 2006
Emma was seen at GOSH for another MAPPING session and her electrodes were tweeked slightly. She has been very frustrated as she has been stuck in her pushchair for most of the day and been very bored. She is also getting very upset as she is unable to communicate what she wants.
She tried standing herself up from the floor. Her eye contact has not been good - only if she needs to make it in order to get something!
FRIDAY 17th FEBRUARY 2006
Emma spent the morning at day nursery and has been fine. She ate a pear and went through 3 bowls of fish pie and 2 bowls of custard - I am going to have to tell them that this is unacceptable! Emma doesn't realise when she is full and will just continue eating!
She has played nicely alongside other children with cause and effect toys. She got very distressed when her implant cut out and the staff were unable to sort it, but she soon perked up when mummy managed to fix it for her.
Her eyes have been rolling and deviating lots and we are beginning to think that it might be linked to tiredness, so we will be monitoring this to see if we can find a pattern.
Emma wriggled her hands out of mummy's when taking supported steps to try and do it independently and she managed one step - she will get there!
WEDNESDAY 22nd FEBRUARY 2008
Emma had a very restless night and kept waking in what seemed like pain. It could be due to bad nappy rash she has - she looks burnt bless her. Her eye contact is getting much better and she turns consistently everytime she hears a voice. she got very upset when mummy had to take the harness that holds her cochlear implant off her in order to change her clothes and tried putting it back on herself as she couldn't cope being without access to sound!
FRIDAY 24th FEBRUARY 2008
Emma spent the morning at Nursery as a proper session and apparently had a good time, although they did still feed her seconds! She is now turning constantly to her name and even went looking for mummy when her name was called from another room.
She took two independent steps holding on to her bottle for 'reassurance'. I am sure she will be walking within the year. Just cannot believe that we were told she would not be able to sit up let alone walk again. I am so very proud of her.
SUNDAY 26th FEBRUARY 2008
Emma nose-dived out of her cot this morning and has prompted us to seriously think about transferring her to a proper bed - who would have thought she would ever be in a normal bed?!
She has let daddy hold her hands to help her bang two plastic cups together and has stilled and turned to mummy singing and calling her name.
She has been climbing up and down of the settees in order to collect things that have been placed there for her to reach and she is far more controlled when coming down.
The cable on her processor broke (again!) and she became very distressed until it was replaced.
Monday, 3 November 2008
January - February 2006 (Catch-Up)
The following is a summary of the significant events that occurred in Emma's life in January 2006:
SUNDAY 1st JANUARY 2006
Emma took a few steps towards mummy and daddy with hardly any support and even stood alone for a few seconds unsupported before plonking herself down on the floor in a very controlled manner. Her cochlear implant keeps cutting out and causing her distress as she doesn't understand why sometimes she has access to sound and at others she doesn't - seems very cruel!
MONDAY 2nd JANUARY 2006
Emma definitely turned to the sound of the vacuum cleaner today - hooray! Her cochlear implant is still on the blink. Great Ormond Street Hospital have been called and a message has been left for them to send out some new cables for the device.
Emma definitely turned to the sound of the vacuum cleaner today - hooray! Her cochlear implant is still on the blink. Great Ormond Street Hospital have been called and a message has been left for them to send out some new cables for the device.
Her eyes have been deviating to the left quite a lot today but her eye contact has been pretty good considering.
She took an unsupported step towards daddy this afternoon.
TUESDAY 3rd JANUARY 2006
Emma spent the day in Respite care and has started to interact well with the other children.
She has stood unsupported several times and took a step towards mummy without support. She also took 3 unaided steps across her bedroom as she was holding onto her bottle and seemed to use it as support.
GOSH are sending out replacement cables today - thank goodness!
WEDNESDAY 4th JANUARY 2006
Emma has vomited violently twice today. The Dr came out to see her and said that he could not see any signs of infection, but that should she do it again, and should she remain lethargic and sleepy to take her straight to a&e - I bet he did! It's his practice that misdiagnosed Emma's meningitis in the first place!
Emma has vomited violently twice today. The Dr came out to see her and said that he could not see any signs of infection, but that should she do it again, and should she remain lethargic and sleepy to take her straight to a&e - I bet he did! It's his practice that misdiagnosed Emma's meningitis in the first place!
Luckily, she perked up in the afternoon and has played well.
The spare cochlear implant arrived and has been working fine - Emma has been wearing it all day - she definitely turned twice to her name being called.
FRIDAY 5th JANUARY 2006
Emma said what sounded like 'more' at dinner time - but this might have been coincidental as I am so desperate for her to talk! She is definitely understand 'for mummy' however, as even without using gestures to emphasise what is being said she is passing the item being asked for to mummy.
She has started 'dancing' to her musical toy and definitely recognises the sound of her drum being played and will turn to look for it consistently - looks like we might finally be getting somewhere - she seems to be making more sense of sounds.
SUNDAY 8th JANUARY 2006
Emma has started using 'a', 'e', 'i' and 'ga' sounds. She removes the coil of her cochlear implant from her head as usual but she is now passing to daddy to replace - she obviously enjoys having access to sound and doesn't like being without hearing. Thank goodness!
She has made some good eye contact.
She took two unaided steps towards daddy and wanted to keep trying.
MONDAY 9th JANUARY 2006
Emma was taken to 'Chatty Monkeys' playgroup for deaf children today but she is definitely not ready for it and was rather overwhelmed by all the noise and children. She got very upset and was inconsolable. She did not like being handled by the staff there as she is still very touch sensitive after having gone through the ordeal she did in hospital last year.
TUESDAY 10th JANUARY 2006
Emma did well at her weekly physio session. The Speech and Language Therapist saw her and commented on her lack of eye contact - she should have seen her a month ago! These professionals are always so negative! What about praising how far her eye contact has actually come along?! It is so infuriating! Fair enough - she only seems to make eye contact with people who are wearing glasses - but at least she IS making eye contact of some sort - a few months ago she wasn't at all!
She has stood unaided a few times today.
She is now also responding to her telephone toy that rings.
Her eyes have been deviating lots today and definitely seem blurry - she keeps rubbing them as if trying to get them to focus.
WEDNESDAY 11th JANUARY 2006
Emma was seen in Oxford by the Neurologist today and he is very happy with her progress - Wayhey - at least someone is! He is adamant that she will continue to progress (although there are times when I do doubt it). He is hoping that once her hearing and speech develops, her cognitive abilities and eye contact will start to progress too. She is in what he refers to as a 'pre-lingual' stage and that her brain is probably functioning as that of an eleven or twelve month old. We can therefore, not expect her to behave as a 26 month old and need to go at her pace.
SUNDAY 15th JANUARY 2006
Emma's babbling seems more 'structured', she is also communicating her needs a little better - she shakes her head adamantly when she doesn't want something and flaps her arms manically and squeals loudly when she does want something!
She was transferred to her new bedroom this evening and coped really well with the change - settled straight to sleep!
MONDAY 16th JANUARY 2006
Emma was seen by the ophthalmologist this morning who is happy with her progress and is not concerned that she is photophobic - he thinks that this might be something that has been left over from the meningitis and should fade after a while - how long does it take to actually recover from the disease!!! Poor little bubs :-(
He is also happy that her eyes are moving equally.
Emma's implant is playing up yet again - for such an expensive piece of equipment I am shocked at how much it breaks! She has been very upset and screaming lots when it has not been working.
TUESDAY 17th JANUARY 2006
Emma made lovely eye contact with another little girl in her physio group and she also looked directly at the Speech and Language Therapist when she visited her this afternoon - stick that in your pipe and smoke it!
She has also been engaging in play with others quite well although she still prefers to be left alone to do her own thing. She finds processing new things very tiring and will play up instead in an attempt to get out of it.
She has been babbling nicely and has started making 'ba ba', 'ga ga, ' and 'ma ma' sounds.
She had a raspberry milkshake this afternoon, but because she is still so weak from the illness the sugar went straight to her head and she started crawling around the house manically and head-butting the settee for 15 minutes non-stop!
WEDNESDAY 18th JANUARY 2006
The Teacher for the Deaf (Gill) came to see her today and Emma actually spent a lot longer playing with the toys than usual and was interacting nicely. Schooling options have been discussed and visits will be arranged. I would like Emma to go to the local Special Needs school as I strongly feel that she will not get the specific and huge amount of support she will need in a mainstream school. Emma's needs go far beyond being deaf and her global developmental delay would, in my opinion, be catered for much better in a Special school. (Plus I teach in a mainstream school and I do not believe that she will do as well as in in a Special Needs school).
THURSDAY 19th JANUARY 2006
Emma has started to help with dressing and actually tried to put her arm through the sleeve of her pyjama top.
FRIDAY 20th JANUARY 2006
The Teacher for the Visually Impaired (Janet) saw her today and is very impressed with the way in which Emma is manipulating, examining and playing with toys, and the fact that she is no longer mouthing everything she sees but using her hands more. She also commented that her eye contact is coming along nicely and that the only reason she is not making it with people is because they are, at present, not as interesting to her as her toys are. She looks at people if she needs something from them, but other than that, she has no need to as far as she is concerned.
SATURDAY 20th JANUARY 2006
Emma pushes her face forwards when mummy says 'Let's wash your hands and face' without using any prompt or gesture to help her understand what is being said.
MONDAY 23rd JANUARY 2006
Emma was taken to 'Chatty Monkeys' playgroup again this morning and actually lasted the entire 2 hours before getting tired. The staff did not try and push her into joining in with any activity and she did really well just pottering around and playing with the toys. She wasn't really aware of others around her but at least she had a better time than before.
She is very steady on her feet now - even when stood and is taking aided steps a lot better.
TUESDAY 24th JANUARY 2006
Emma was seen by the SALT again today and she made good eye contact, lots of vocalisations and stayed on task for a good amount of time. She also turned immediately to fire engine, ambulance and police car toys.
Her eye contact is really good at mealtimes in particular!
She stood unsupported at her physio session so they have finally seen her do it for themselves - yay!
WEDNESDAY 25th JANUARY 2006
Emma has been pulling her implant off lots today so it is obviously playing up - again! She is also making very high pitch screaming noises that are another indicator that something is going on with the device and causing her neurological problems - bless her. Cochlear implants, on the surface, are fantastic, but they definitely have their flaws!
She has been very wobbly today - mostly when not wearing the implant as again, it also affects her balance.
FRIDAY 27th JANUARY 2006
Emma was seen by Judy from the Teaching And Support Services (TASS). Judy was very impressed with Emma's eye contact, her attention span with toys and her turn-taking. She would like those skills to be reinforced further, as well as 'babble' communication and her comprehension of cause and effect toys. She is also very eager to discourage Emma's casting of objects.
She got very upset when she woke from a nap and didn't have her implant on - she started feeling her ears and really crying!
MONDAY 30th JANUARY 2006
Emma has been taking unaided steps between furniture (2-3 steps).
She saw Gill again and has been quite interested in her toys - a lot more than usual anyway!
She has become more aware of the dogs and likes it when they yap or bark!
She did some lovely turn-taking with mummy and stayed on task for 4 minutes! The SALT has said that Emma's cognitive and social skills need to develop first before her speech, language and hearing skills can.
Introduction
This blog carries on from the Diary that followed Emma throughout the year in which she contracted meningitis and septicaemia at the age of 15 months, in 2005. The day-to-day diary of that year can be found by clicking here (this link will take you to the main website from which you can then view the diary).
For those of you who do not have the time to read the diary in full, let me very briefly summarise the events for you here:
Emma was 15 months old when she was misdiagnosed with an ear infection and was left for two days without receiving medical attention that she urgently needed. As a result, when she was eventually admitted to hospital and diagnosed with Pneumococcal Meningitis and Septicaemia, she remained in a semi-comatosed for a month and spent a total of two and a half months in hospital, undergoing horrific treatment, including brain surgery, lumbar punctures, MRI and CT scans; and that's not to mention the daily (usually several times a day) blood tests, cannula and long line insertions she had to endure. She suffered from numerous seizures, lost her vision, mobility and hearing, contracted Hydrocephalus and sustained extensive permanent brain damage. There were several times that we were told that she wouldn't make it and we honestly believed that we had lost her. We were also told that Emma would never walk, talk, see, hear or feed herself again, and her prognosis was very very bleak.
However, despite all the odds being completely against her, our little girl did survive both the extremely aggressive form of meningitis she contracted and the septicaemia (the latter which she contracted twice - the second time following a cochlear implant operation in October of the same year).
For those of you who do not have the time to read the diary in full, let me very briefly summarise the events for you here:
Emma was 15 months old when she was misdiagnosed with an ear infection and was left for two days without receiving medical attention that she urgently needed. As a result, when she was eventually admitted to hospital and diagnosed with Pneumococcal Meningitis and Septicaemia, she remained in a semi-comatosed for a month and spent a total of two and a half months in hospital, undergoing horrific treatment, including brain surgery, lumbar punctures, MRI and CT scans; and that's not to mention the daily (usually several times a day) blood tests, cannula and long line insertions she had to endure. She suffered from numerous seizures, lost her vision, mobility and hearing, contracted Hydrocephalus and sustained extensive permanent brain damage. There were several times that we were told that she wouldn't make it and we honestly believed that we had lost her. We were also told that Emma would never walk, talk, see, hear or feed herself again, and her prognosis was very very bleak.
However, despite all the odds being completely against her, our little girl did survive both the extremely aggressive form of meningitis she contracted and the septicaemia (the latter which she contracted twice - the second time following a cochlear implant operation in October of the same year).
She has been the biggest fighter I have ever known, and after the horrific ordeal she had to endure, by the end of that year she was at a point where she was learning to walk, was able to feed herself from a loaded spoon, could hear thanks to a cochlear implant and her vision was slowly returning.
This blog carries on from this point in Emma's rehabilitation and continues to the present day. It starts in January 2006 and will take you up to the present day with information being provided on either a weekly, fortnightly or monthly basis, depending on the number of significant events that occurred within each time-frame regarding Emma's development. Once the present day has been reached, the blog will be updated on a weekly basis, highlighting all important occurrences that have taken place within that week.
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