October 31 2013

Called and spoke with Daniel. Helen has been ok today. Temperature is fine. No more seizures. No more vomiting. 

October 30 2013

Busy day for madam today.  She had Big Grampy visiting this morning.  He always gets a good reception (when she can be bothered to stay awake!!).  Big Grampy is my Dad. He tries to visit Helen about once a week, in between his other "positions" as husband, carer for his mother-in-law, volunteer museum person (?), fisherman, football watcher, gardener, barman and general all round great person!  Since Helen's accident he has always read to her.  He has read anything from Hitchhikers Guide to the Galaxy to the newspaper to Private Eye to the current book of poems.  

This afternoon Rachael and James visited followed by me about an hour later.  Rachael told me that she thought Helen had had a fit soon after she got there.  Violet took me to one side and said that she had had a fit lasting about a minute.  It turns out it wasn't the first one she had suffered.  She had one last at the beginning of August, one in July. three in June and a couple prior to that.  I didn't know any of this!!  I told Violet that I asked the GP why Helen was on an anti epileptic medication and he said it was prophylactic.  Obviously this isn't quite the correct story.

I spoke with Dad later and it turns out that Helen had a fit while he was there as well.  He told one of the nurses.  Fits only need "treatment" or intervention if they last more than three minutes.  Most of hers have been about a minute.  After speaking with Dad, it appears that she almost certainly had one when he was there this morning. He reported it to staff.

Rachael and I took Helen upstairs.  The stroke club were there but we went into one corner.  Helen was sick while we were up there.  I took her back to her room and Violet and I cleaned and changed her before going back up again.

Helen went back to bed about 530 and just after they got her back to bed, she had another fit.  This one lasts about 40 seconds.  Then about an hour later, she was sick again!!  It might be that she is brewing something or it might be that she just has a stomach bug, or it could be the fits and the brain activity that are causing the sickness.  I told Violet that I can be called at any time during the night if necessary and that I would call tomorrow to see how Helen is.

It's just worrying that there were a few fits all within a fairly short time and that she vomited twice as well.

Fundraising

A couple of Helen's friends approached me about a month ago saying that they wanted to do some fundraising either for Helen or in her name.  I was gobsmacked and very humbled that they would want to do this for her and for us.  We decided on a date and I suggested who the proceeds should go to.  Arron and Nelly decided on where and what format the event would take.  So ........

November 16th 2013 from 7pm

The Gun Pub, Andover Road, Newbury, RG14 6NE

The charities being supported are The Brain Injury Group (BIG) who have been a massive support to me and Holy Cross Hospital where Helen is getting her rehabilitation. 

Arron didn't know whether to arrange a karaoke, quiz, raffle or similar.  Decided on karaoke and a raffle.  The karaoke he arranged fell through.  On Facebook I got and pleaded.  A friend of mine stepped up and got his friends to fill the gap for the cost of a few drinks.  Very grateful to them for this.

Nelly drafted a letter to take to companies in Newbury for raffle prizes.  They have got a few nice donations from local companies.  I have sent a few letters out as well.  It's all going well.  

Got a few more to approach.  Other people have got their employers to donate something as well.

The other thing we have arranged is silicone charity bands.  Theresa, Rachael and I sat down and decided on the colours and writing.  They arrived yesterday and they are awesome!!  My hands look so old in the picture!!  We have already had quite a few orders.  The profit will be split between the two charities above.

If anyone wants one they are £1.50 each.  They come in dark blue, lime green, red, orange, black, white, teal, purple, red, grey and pink.  The words on the bracelet says "Helen's Hope - Hold on for one more day".  They can either paid for in cash and collected or paid for by PayPal and I will post them out at a cost of 60p for up to 5 and 90p for 6-15, larger amounts will cost more). My PayPal account is annette.m.welch@gmail.com.

I've got just a few bands!!

The Brain

In Helen's accident she sustained injuries to every part of her brain.  The big questions were what did this mean and how could she be affected?

What parts of the brain do what?

The Cerebral Cortex

The cerebral cortex is the largest part of the brain and is the area that is responsible for all our thinking activities. It is divided into two connected halves – the left and right cerebral hemispheres.

The left hemisphere controls the right side of the body and the right hemisphere controls the left. For example, if a person sustains a brain injury, such as a stroke, to the left hemisphere in the area of the cerebral cortex that controls movement, this may result in weakness or even paralysis of the right arm and leg.

In most people, the left hemisphere primarily controls verbal functions such as speech and language while the right hemisphere primarily controls visual spatial (non-verbal) functions such as those involved in drawing, rhythm or finding one’s way in unfamiliar surroundings. The hemispheres are known to process material in different ways with the left cerebral hemisphere specialising in processing material in a sequential and logical manner and the right cerebral hemisphere processing information in a holistic and intuitive way.

The cerebral cortex is further divided into four areas, or lobes:

1. The Frontal Lobes

2. The Temporal Lobe

3. The Parietal Lobe

4. The Occipital Lobe

Each lobe of the brain controls specific functions and skills.

The Frontal Lobes

The frontal lobes have been termed the “executive” of the brain. This is where all of our higher-level thinking goes on. They allow us to:

- Reason logically

- Make decisions

- Plan and organise

- Problem-solve

- Exercise good judgement

- Monitor or manage our actions

It is considered to be the home of our personality and the control centre for our emotions and behaviour. The frontal lobes allow us to apply our knowledge and adapt our behaviour so that it is appropriate to the situation we are in. The frontal lobes also contain the motor cortex, a vital part of the brain system controlling movement.

The frontal lobes are extremely vulnerable to injury due to their position at the front of the skull. Studies have found that the frontal area is the most common region of injury, even following mild brain injury. Damage to this area can cause myriad cognitive problems and can dramatically change social behaviour and personality. Physical problems can include the loss of fine movements, lack of strength in the arms, hands and fingers, little spontaneous facial expression or difficulty in speaking.

Temporal Lobe

The temporal lobe lies just behind our ears and contains the auditory cortex. This allows us to interpret sound. The temporal lobe stores most of our memories and is involved in aspects of language, including our ability to use language and understand what we hear.

Like the frontal lobes, the temporal lobe is involved in regulating certain aspects of personality. Deep inside the temporal lobe are the structures of the hypothalamus and limbic system. The hypothalamus is involved in instinctual behaviours such as aggression, sexual arousal, appetite, thirst and temperature control. The limbic system is in control of emotional reactions.

Damage to these areas can severely disrupt our emotions resulting in sudden and dramatic mood swings; and can also lead to inappropriate social behaviour such as hyper-sexuality and impulsiveness.

Parietal Lobe

The parietal lobe contains the somatosensory cortex which receives and analyses information from the skin concerning touch, pressure, temperature and some aspects of pain.

The parietal lobe is vital to our spatial understanding of the world. For example, it enables us to understand where we are in relation to our surroundings and where our body parts are in relation to each other, as well as the spatial relationships between the things we perceive in our environment.

Damage to the parietal lobe can impair reading, writing and mathematical abilities, drawing and constructional tasks, as well as self-care abilities such as washing and dressing.

Occipital Lobe

The occipital lobe analyses what we see and is, therefore, responsible for sight. If it is damaged, blindness or partial blindness can result.

The brain

Fractured Base of Skull

What are Low Level Neurological States?

Low Level Neurological States Following Traumatic Brain Injury by: Nathan Zasler, MD and re-edited by me with bits removed.

There is much that remains unknown about assessment and management of severe brain injury. This brief primer will attempt to examine a few critical topics as related to the terminology, evaluation and management in persons of low level neurological states (LLNSs) following acquired brain injury and in particular traumatic brain injury (TBI).

CLINICAL FEATURES OF LLNSs

Coma is a state of unarousable, unresponsiveness. Neurobehaviorally, these patients typically present with eyes closed without evidence of opening either spontaneously or to external stimulation; do not follow commands; do not demonstrate goal directed/volitional behavior; do not verbalise or mouth words; and cannot sustain visual pursuit movements beyond a limited degree. One must exclude neurobehavioral signs and symptoms of "coma" secondary to pharmacologically treatment with agents such as paralytic or sedative drugs.

Vegetative state (VS) describes a condition in which the patient demonstrates arousal without concurrent awareness.Behaviorally, vegetative state patients have periods of eye opening, either spontaneously or following stimulation; may demonstrate responses to external stimulation including generalized responses to pain such as posturing, fast heart rate, sweating, as well as, motor responses such as a grasp reflex. 

Neither of the aforementioned types of behavior are felt to be representative of conscious awareness. Persons in VS also typically demonstrate vegetative functions such as sleep-wake cycles, more normal respiratory patterns and digestive system functions. Persons in VS also typically have "roving" eye movements without true visual tracking ability. The presence of the aforementioned sub-cortical responses should not be considered as diagnostic of VS as these findings may also be seen in minimally conscious patients (see below).

Patients in "persistent" and "permanent' vegetative state meet all the criteria neurobehaviorally that patients in vegetative state do. Generally, the modifier "persistent" is endorsed when VS has lasted for at least a month, however, there is so little agreement, in practice, regarding how this term is applied that it should probably be removed from the current neuromedical vocabulary. In general, a time frame of one year for traumatic and three months (some have advocated for a period of six months) for hypoxic-ischemic brain injury (HIBI) should be utilized for prognostic purposes relative to determining that emergence from vegetative state is statistically highly unlikely. Consensus opinion has dictated that after these time frames, it is appropriate to use the phrase "permanent vegetative state".

The word "permanent" in permanent vegetative state is a relative misnomer as there is no way to predict with 100% accuracy whether someone will emerge into a state of consciousness from an otherwise vegetative state. Additionally, clinicians should only determine prognosis for a patient who is vegetative at one year following trauma or three (and possibly up to 6) months following hypoxic-ischemic injury if there has been an adequate period of extended patient observation and sufficient neuromedical assessment to rule-out conditions potentially adversely affecting ongoing neurorecovery and/or neurobehavioral assessment. Many have advocated for dispensing with the term "vegetative state" due to the concern that it is both potentially pejorative and misunderstood alternative phraseologies such as post-coma-unawareness (PCU), among others, have been suggested and continue to be debated.

Patients who are in a minimally conscious state (MCS) are no longer in coma or VS but demonstrate low level neurobehavioral responses consistent with severe neurologic impairment and disability. Patients who are in MCS are able to demonstrate, albeit intermittently and possibly incompletely, some level of awareness to environmental stimulation consistent with the presence of cognitive function. The examining clinician must take into consideration both the frequency and the context of the behavioral response in order to interpret the meaningfulness and/or purposefulness of a given behavior. All patients in MCS produce, by definition, inconsistent responses to their environment that do not reach threshold for reliable and/or consistent communication.

ASSESSMENT ISSUES

There is no way to clinically assess "internal awareness" at the bedside in a patient otherwise unable to motorically express such awareness relative to any external stimuli. Thus, it is possible that some patients who are indeed conscious at some level are labeled incorrectly as being in a vegetative state. Although sophisticated clinicians will be less likely to misdiagnose patients who are in MCS as being vegetative, misdiagnosis of VS in the presence of exam findings consistent with conscious behaviors remains, unfortunately, fairly common based on available literature. With as much confusion as there still is regarding such basic things as how to perform a bedside assessment of a patient in a LLNS it is no surprise that misdiagnosis occurs with some frequency.

Practitioners should also understand that there is no consensus opinion as of yet on whether neurodiagnostic or laboratory testing may diagnose VS per se. What is agreed to is that the diagnosis, at present, is best made by serial bedside neurobehavioral assessment. Thorough assessment is vital for determination of an accurate neurological diagnosis. One needs to ascertain that the patient is in good general health and that there are no issues with intercurrent infection that may mask the individual's true neurological status. Attempts should be made to assure that no sedating medications or abnormal metabolic states are negatively impacting on arousal level.

The patient/examinee should be assessed in bed for determination of full integumentary status and limb range of motion, among other important physical examination points. Additionally, and as feasible, it is preferable to also exam the person in a supported seating position to optimize arousal. Efforts should be made, particularly when, in the context of most forensic assessments, there may only be one exam, to do the assessment at a time of day when the person is normally most arousable. Over stimulation and/or an environment with distractions should be avoided to optimize examinee attentional capabilities. As related to the physical examination of the low level neurological patient/examinee, it is important to conduct a thorough general exam, and one not just germane to the neurological level of function of the individual in question. Specifically, appropriate evaluation of the examinee¹s general status including vital signs and multisystem assessment is paramount to providing a comprehensive understanding of the individual risk factors and/or complications associated with their low-level neurological state. Probably, two of the most important systems are the integument and musculoskeletal systems particularly as related to the potential negative repercussions of relative immobility. Neurological examination should include cranial nerve assessment 1-12, deep tendon reflexes including pathologic reflexes, sensory examination (including visual fields, audition and nociceptive/tactile responsiveness), cerebellar assessment and motor function testing, among other areas assessed. The mental status assessment of an individual in a low level neurological state relies on an in-depth, bedside, neurobehavioral assessment with focus on evidence of responses consistent with awareness versus lack thereof, best accomplished by fastidious attention to nuances of neurobehavioral assessment, as well as, use of validated assessment tools such as the Coma Recovery Scale Revised.

LATE RECOVERIES

Unfortunately, the media often inaccurately reports information regarding late recoveries following brain injury as apparent "miracles". All too often inadequate information is provided regarding pre-recovery neuromedical status, findings and treatment, and/or medications at time of recovery or changes therein. In many of these cases, there is sub-optimal follow-up to know what "happens" with these individuals. These types of cases are critical for practitioners to convey to fellow clinicians and should be considered "reportable".

RECENT DEVELOPMENTS

There have been recent developments that further expand our understanding regarding brain function in patients in LLNSs, particularly as related to functional brain imaging studies. Recent work suggests that there may be wide variations in brain metabolism in VS and that some cerebral regions can actually retain partial function. Other research has demonstrated that painful stimulation can produce increased neuronal activity in certain parts of the cortex in patients in VS, even when resting brain metabolism was severely impaired; yet, this activation was felt to occur in seeming isolation and dissociation from higher-order associative areas of the cortex thought to be necessary for conscious perception.

Further functional imaging work using positron emission tomography (PET) work has demonstrated that recovery of consciousness is paralleled by restoration of functional connections between the deeper, older sections of the brain and the newer "higher" cortical centers of the brain. These studies provide further data that question long standing neurological dogma regarding the accuracy of the bedside assessment for VS diagnosis.

Such work should beg the question of how much we truly understand about VS and what the specificity and sensitivity is of our traditional bedside neurobehavioral assessment methods for defining conscious awareness in patients who may otherwise appear vegetative. Additionally, there is now limited functional imaging data to show that some patients in VS may actually show fragments of behavior that are not tied to conscious awareness yet clinically appear to suggest such behavior.

PROGNOSTICATION

Generally very young (less than 2 years of age) or very old (greater than 60 years of age) have worse outcomes, particularly relative to chance for survival. Research has demonstrated that severity indices hold the highest level of predictability when utilized within the first 2 weeks post-injury. Some of the factors that may correlate with poorer outcome and higher levels of acute mortality, include, Glasgow Coma Scale (GCS) score of 5 or less, prolonged post-traumatic amnesia, abnormal brainstem findings and elevated intracranial pressures (particularly when very high and/or protracted).

The prognosis for emergence from the vegetative state is not only dependent upon the etiology of the insult, but also the time post-insult. Specifically, the longer from onset of injury, the worse the prognosis for emergence and once emerged the worse the prognosis for a good functional outcome.

The best prognosis is associated with recovery of consciousness within the first several days to two weeks. Recovery of consciousness after a month is associated with a higher probability of dependency for basic activities of daily living and mobility. The best recovery occurs in those patients who emerged from the vegetative state within six months with longer periods prior to emergence generally being associated with greater levels of neurological impairment, as well as, disability. Those patients recovering towards the end of a year typically have permanent, very severe, functional disability.

Differences exist relative to comparative prognosis across different groups of patients with brain injury depending upon numerous factors including the etiology of the brain insult. Assuming all other factors are constant, hypoxic/anoxic and/or ischemic brain injuries (HIBI) have a much poorer neurological and functional prognosis than traumatic brain injury without secondary brain insult regardless of the type of primary brain injury incurred i.e. diffuse axonal injury (DAI) versus focal injury, or both.

Clinicians should avoid making clinical and prognostic decisions based on literature garnered from studying TBI populations if the patient in question had a HIBI. Although there are some parallels between traumatically induced low level states and those that occur as a consequence of hypoxic injury, there are multiple major differences. Some of theses major differences include neuropathologic findings, associated clinical impairments, and short, as well as, long term neurologic and functional outcomes.

REHABILITATION

Interdisciplinary rehabilitative management of this patient population involves preventing potential morbidity issues as well as providing appropriate neuromedical and rehabilitative interventions to maximize potential neurologic and functional outcome. Rational neuromedical and rehabilitation management of this patient population has been delineated in several articles.

A full neuromedical work-up must be performed prior to labeling any patient as vegetative. Adequate understanding of the "late" neuromedical sequelae of traumatic brain injury is essential in the care and treatment of the this population. Medical conditions such as post-traumatic epilepsy, particularly of the non--convulsive type, post-traumatic hydrocephalus, neuroendocrine dysfunction, occult infection, late subdural hematomas, as well as, iatrogenic (e.g. physician caused) problems related to inappropriate use of pharmacological agents may all cause an individual to "look" vegetative when indeed they are not. Appropriate care should emphasize minimizing morbidity and treating any underlying condition(s) potentially suppressing neural recovery potential.

Researchers continue to examine various classes of drugs in an attempt to find agents that may hasten emergence from VS and/or optimize neurological improvement in those patients in MCS. Good nursing care with an emphasis on skin, respiratory, bowel/bladder care is crucial. Appropriate and timely prescription of adaptive equipment including seating and orthotics is paramount. Family involvement, education, and counseling should also be an integral part of any program dealing with persons in LLNSs.

The issue of whether so-called "coma stimulation" or structured sensory stimulation (SSS) can in any way actually be a negative factor in recovery has only recently been theorized. Firstly, coma stimulation is really a misnomer since most patients typically are not comatose.

Such issues of how stimulation may cause over-arousal and increase fatigue, decrease seizure threshold and/or increase maladaptive plasticity including spasticity, definitely need to be critically assessed. Nonetheless, the literature supporting a utility for such structured stimulation programs is lacking and most clinicians in the field would acknowledge that SSS probably has no effect on either rate or eventual plateau of neural recovery following acquired brain injury.

If sensory stimulation is offered, it should be done in a cost-efficient, ethical, and responsible fashion, not as the major component of the intervention program. SSS should be geared more towards tracking of neurobehavioral status than as a treatment intervention, per se. The exact role of other, more controversial interventions, such as neural stimulation and pharmacotherapy, for promoting recovery from VS remains unanswered but definitely warrants further research in a controlled, blinded fashion to establish the efficacy of these interventions .

As a community of health care providers, rehabilitation clinicians have sufficient experiential consensus, as well as, a growing base of prospective data regarding the efficacy of early and intensive rehabilitative treatment to minimize short, as well as, long-term morbidity, decrease health care costs, and optimize long-term functional outcomes.

LIFE EXPECTANCY ISSUES:

Until recently, there was no literature that looked at specific morbidity risk factors and/or quality of care after severe brain injury in either vegetative or "minimally conscious" individuals. A recent study examined the long-term survival of children and adolescents after severe traumatic brain injury and found that the chief predictors of mortality were the level of independence in basic functional skills such as mobility and self-feeding.

For those individuals who had no mobility and were 6 months post-injury, the study found that their remaining life expectancy was predicted to be 15 years. At the most severe end of the LLNS disability spectrum, the permanent vegetative state, life expectancy has been shown to be at most 12 years without significant sex differences. Persons in MCS seem to have a similar albeit maybe slightly longer survival time. Studies of individuals in MCS show a propensity for only slightly longer survival times than those in the permanent vegetative state.

There are still limitations to what one can and cannot say about life expectancy in LLNSs. Appropriately conducted median survival time estimates must consider the historical record for past and current risk factors for medical morbidity, as well as, the frequency, type and severity of all infections and complications documented post-injury. Risk factors for medical morbidity such as poorly controlled generalized seizures, significant swallowing dysfunction and risk for aspiration, poor oral secretion control, absent or severely diminished gag or cough reflex, significant myostatic contractures and/or severe spasticity all have the potential to decrease life expectancy in and of themselves as related to their correlation with morbidity and therefore mortality.

Another factor to analyze is the temporal relationship of illness to injury, that is, is the individual in question more or less medically stable over time or not. Another seemingly crucial factor is the individual's relative degree of immobility and the implications for cardiopulmonary, gastrointestinal, musculoskeletal, integumentary and genitourinary morbidity and/or mortality. Neurologic deterioration over time generally is a harbinger for a shorter median survival time.

CONCLUSIONS

There is still much to be learned about LLNSs and in the last 5 years alone there have been significant inroads made into our understanding of these conditions. As we learn more about neurosalvage following severe brain injury, as well as, the neurorehabilitation of these disorders, we will hopefully be able to offer more to such patients and their families to not only improve their neurological outcome but also to add both years and quality to their lives.

Link to original research paper

Letter from your brain

This was written in 1996 by Stephanie St. Claire.  Stephanie captures the true spirit of being a survivor of a brain injury.

"Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love your wounded brain"

Letter from your brain

October 18 2013

Arrived about 2 and it's music afternoon!!  I haven't managed to be here when the done one yet.  There is a woman on a piano and another singing.  It's really good.  All the residents are upstairs listening and joining in if they can.  The woman is singing mostly old stuff - Elvis, Vera Lynn, opera and musicals.  Helen had just got out of the lift and she the HCA said she had been smiling.  I pushed her into the activity room and found a space.  And she was smiling!!!!  It's the first time I have seen her do it.  It was quite emotional.  She was smiling during some of the music.  She also seemed to be moving her mouth.  It didn't last for long but it did happen.

Eyebrows finally plucked - they were threatening to take over her face!  

Madam is getting a porker now.  She needs new trousers. Apparently they don't fit her very well anymore!  I must find out how much weight she has put on.  She isn't really a porker though. It's just gone on her top half.  I thought her upper arms were looking bigger but didn't like to point it out!  They'll have to make new splints for her soon.

I have finally told her that Primrose got run over and died.  She was moving her mouth before then and she seemed to stop when I told her - might be coincidence though.  I told her that we has a new kitten.

Spoke with Chris Hinton, the Financial Director, about the fundraising event.  He is going to arrange some badges to be made up for Arron, Nell and me so that people are happy about who is organising the event.  Arron has arranged the event to be in The Gun and there will be karaoke, raffle and hopefully some wrist bands (as long as they get here in time).  Got to write off for raffle prizes from companies.

Blood sugar of 2.6 at 1930, just before I left.  Sugar water given.  I left the projector on for her because she was knackered.

Bought Sanex Kids bath foam for her because she has to have pH neutral bath/shower stuff now.  Research has shown that pH neutral cleansing agents are best for preventing skin breakdown in vulnerable people.

The smile:)

October 11 2013

Visit with Dad. Helen alert and awake when I got there. Went through DVDs with her. She seemed to take notice of bits of it.  Took her upstairs for a while then down into the day room.  The staff say she has been fine. Blood sugars are fairly stable but still on the higher side. She seems to be quite warm today despite it being chilly. Brought her tv mount and left instructions on where I would like it to go. Left her with her projector on.  Asked nurse check her trachy tape because it seemed quite tight. She went in to check her temperature when I left.