Dear Sheddists,
many of you will have observed over the years the deteriorating quality of my long-running blog, so with self-improvement firmly in mind I have enrolled in not one, but two courses at a renowned Arts Centre.
I started the classes earlier this week - the first in creative writing and the second in photography - and both were excellent.
During my first class the tutor invited us all to spend three minutes 'free writing' in response to the following introduction..,
'The letter I received today was most surprising because ...'
This was my effort.
'The letter I received today was most surprising because she had died some two years ago. The writing was frail and spidery. Not surprising really given the arthritis that had plagued her in later years. And what was that blotch on the corner of the blue Basildon Bond notepaper? Perhaps a tear? Perhaps a spot of grease that dripped inadvertently from her customary breakfast bacon sandwich?
She so loved to write in the morning. She always left a notebook and pen on the kitchen table before retiring to bed and on awakening she reached for it as automatically as a young child clutching a toothbrush.
But why had it arrived now? Who had sent it and when? He turned the paper over slowly searching for a clue of its origins. He lifted it to his nose and inhaled the faint musky odor of a long-deceased thought that trailed off with a "love you"...
The second exercise we were invited to undertake was the construction of a letter demonstrating emotion. I chose to write one to an anonymous stranger.
'You've been parking our car outside my drive every morning for the last six weeks. I'm fed up with it so that's why you found this note on your windscreen.
You probably don't know it but my my daughter, my pathetic epileptic daughter, is strapped into her wheelchair each and every morning to go to to school. It takes me hours to get her ready. Changing her like a baby, wiping her mouth, making sure she doesn't choke on her mashed-up breakfast. And you - you don't give a stuff do you?
Have you ever seen a six year old choking on a mouthful of food? Well, I have. Watched her rock her head from side to side, turning red, turning blue ... but she's powerless to speak. She's never spoken, she's never screamed. She can't, she just can't - but you make me scream!
Why do you not think of others? Can't you see the sign on the back-window of my van?? The one with a picture of a wheelchair and an ever so polite request to leave room. Well - have you?!!! I see that sign every single day of the week and it reminds me of her, my helpless, hopeless fitting, choking, messed-up little girl in her wheelchair.
She'll never drive a car like you, she'll never walk, never crawl ...
But she smiles. She smiles at me! The sort of smile that lights up my day - that makes up for every single God damned idiot like you who goes his own way without a single thought for anyone but yourself. It only takes a second you know. It only takes one miserable little second to stop and think.
Yours,
the woman whose effing drive you block each and every morning.'
I'm looking forward to seeing how the course unfolds. More soon on what went on in my photography class.
Yours as ever,
electrofried(mr)
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Thursday 14 September 2017
Tuesday 8 April 2014
Quilted memories
How good it is to see him smile!
Thursday 13 February 2014
Saturday 18 January 2014
Yes, I CAN!!
At first sight, these are quite unremarkable photos. A small child toppling a tower of plastic-stacked beakers. But they have much deeper meaning.
Six months ago, this small child, would have found it difficult to sit up unaided. And as for reaching out whilst sitting, that lay beyond anyone's wildest dreams.
With the early support of a Lycra all-in-one, the love and commitment of a dedicated mother and no little determination on the part of one small boy here they are .. some quite remarkable photos!
Six months ago, this small child, would have found it difficult to sit up unaided. And as for reaching out whilst sitting, that lay beyond anyone's wildest dreams.
With the early support of a Lycra all-in-one, the love and commitment of a dedicated mother and no little determination on the part of one small boy here they are .. some quite remarkable photos!
Wednesday 24 July 2013
Family life .. a return to the 'ups' and 'downs' of the real world
Dear Sheddists,
thank you so much for following the trail of this somewhat meandering blog as we journey together through my three month sabbatical. Today's posting explores the reality of our family life, blessings and burdens alike.
A fitting outcome
We're fresh back from adventures in Cornwall and our youngest grandson is fitting once more. This time it's a big one, meaning the emergency medication must be broken out. Here's what Great Ormond Street Hospital has to say about it ....
'Midazolam belongs to a group of medicines called benzodiazepines, which are used to treat a number of different conditions, including seizures. If a seizure lasts for more than five minutes, it may be difficult to stop unless treatment is given. It is therefore important that rapid treatment is given to stop the seizures and therefore prevent status epilecticus.
Status epilepticus is a condition where a person has a seizure (convulsion or fit) or a series of seizures that last for 30 minutes or more, without a complete recovery of consciousness.'
As a family, we've lived day by day with the threat of a major episode never far away and within the hour our dear grandson and his mum are hospital bound on-board an ambulance.
Much to the relief of us all he's released come the evening.
Respite in sight
Respite in sight
By co-incidence, he's booked-in later that week for two days at a local respite centre, meaning we get to look after his elder brother.
Four years old and with the capacity to speak non-stop for several hours at a stretch without seemingly drawing breathe we're in for an interesting time, and so it proves to be. The high-light of his visit is a trip to a local sports stadium for the last of his gymnastics classes for the term.
It's such a joy to watch him climb, crawl, jump and tumble through a carefully constructed circuit, pausing only to chat up the girls on his way round. Clearly, a bright future lies ahead.
A sporting life
And things continue to get better a few days later when we attend School Sports Day at eldest grandson's nursery. We behold a veritable sea of bright, beaming faces, the children shepherded expertly by a crack troop of teachers between track and shade.
The event finishes in some style with a series of push-car races featuring the very best in faux-plastic automobilary!
Postscript
Being part of a family means sharing in both good times and in bad times alike. Our daughter rang this morning to say our previously non-verbal grandson is currently making a series of very interesting sounds.
Bearing in mind he was given just twelve months to live not so long ago that is most definitely one of the good times ... and in more senses than one a most fitting way to end this short post.
Yours as ever,
electrofried (mr)
It's such a joy to watch him climb, crawl, jump and tumble through a carefully constructed circuit, pausing only to chat up the girls on his way round. Clearly, a bright future lies ahead.
A sporting life
And things continue to get better a few days later when we attend School Sports Day at eldest grandson's nursery. We behold a veritable sea of bright, beaming faces, the children shepherded expertly by a crack troop of teachers between track and shade.
The event finishes in some style with a series of push-car races featuring the very best in faux-plastic automobilary!
Postscript
Being part of a family means sharing in both good times and in bad times alike. Our daughter rang this morning to say our previously non-verbal grandson is currently making a series of very interesting sounds.
Bearing in mind he was given just twelve months to live not so long ago that is most definitely one of the good times ... and in more senses than one a most fitting way to end this short post.
Yours as ever,
electrofried (mr)
Thursday 4 October 2012
Two and counting ...
He's a little miracle!
Our youngest grandson celebrated his second birthday just a few weeks ago. And this after being given twelve months to live or existence in a persistent vegetative state. Well he smiled at his cake and the only vegetables in sight were those fed lovingly to him by his fantastic mother.
We're so proud of him, his brother and his mum. Hope the photos make you smile too!
best regards,
electrofried (mr)
Tuesday 30 August 2011
a special day .... a special boy
Last Thursday was a very special day for a very special boy. Our youngest grandson turned one.
He started fitting a few days after he was born. Then the chilling news. The initial prognosis was that he would either die within twelve months or survive in little more than a persistent vegetative state.
Well, come Thursday last week our grandson was still with us, and most definitely not in a persistent vegetative state. His mother took possession of a specially adapted wheelchair on the eve of his birthday, a wheelchair that will enable him to sit upright and look the world in the eyes.
He so much enjoyed the celebrations. Can you picture the enormous beam on his little face, strapped securely into his lovely new wheelchair as he starts to observe the world from a different perspective? Perhaps we too might join him and beam broadly as we see life ourselves, for even the shortest of times, from a different perspective ...
Tuesday 21 June 2011
fathers' day and other tales
What a lovely day!
Six o'clock this morning sees me hunkered down in the electrofried kitchen composing a small homily for the Morning Service at our local Methodist Church. Our House Group is leading today, and we've got a baptism party in too .. so in less than seven minutes I have to cover the meaning of prayer, the joy of baptism, the Holy Trinity and Fathers' Day!
I go with six common misconceptions of prayer, and a tawdry tale of my own conversion some twenty one Fathers' Days ago, then offer up the briefest of prayers myself (principally concerning my unfortunate predilection for leaving things to the last minute). Fluffy the guinea pig plays a pivotal role in the composition of the piece. Hugged to my manly and still pyjamed chest he provides homely comfort and a pair of uncritical ears as I practice my lines outloud, much to the bemusement of Mollie and Dylanne, the two Hounds of electrofried.
Preparation done, and two infusions of Mr PG's finest in hand I return to the electrofried bedchamber to greet my darling wife. A veritable cornucopia of Fathers' Day presentry is produced from beneath the bed, including a rather splendid tome on the humble VW camper van and a selection of Martin Parr postcards.
Our son calls to wish me a happy Fathers' Day. He's learning disabled, and we conduct a delightful semaphore discussion of the "hot off the press" appointment of Alec McLeish as manager to his beloved Aston Villa. Bless!
The morning passes in a blur. Greeting the baptism party in the car-park, the delivery of said homily, then an unforeseen and testing interval of some twenty minutes as we await the arrival of our Minister from another Church to wet the heads of two girls in floating angel dresses. Our House Group leader and yours truly plug the gap. A mixture of choruses, ad libs and a journey out into the congregation to ask the important question, "What are you thankful for today?" sees us safely through.
Mrs electrofried and I return home, and what joy awaits. Family is just so precious isn't it? Our two daughters and our two grandsons are there to greet us. More presents, and two lovely cards. The first is a study in blue by our eldest grandson, freshly dried from Thursday nursery. The second, two precious set of little handprints in red paint. How poignant that is ... just six months ago we might have expected but one.
I choke back the tears, and open the final present of the day. Oh my!!! Two guinea pig leads purchased blind from the internet, one red and one ...... cover your eyes in shame, dear Fluffy ..... pink!!
He bore it stoically as eldest grandson and I walk two boars to the lawn and a browse on early summer grass. What a day, indeed!!
Six o'clock this morning sees me hunkered down in the electrofried kitchen composing a small homily for the Morning Service at our local Methodist Church. Our House Group is leading today, and we've got a baptism party in too .. so in less than seven minutes I have to cover the meaning of prayer, the joy of baptism, the Holy Trinity and Fathers' Day!
I go with six common misconceptions of prayer, and a tawdry tale of my own conversion some twenty one Fathers' Days ago, then offer up the briefest of prayers myself (principally concerning my unfortunate predilection for leaving things to the last minute). Fluffy the guinea pig plays a pivotal role in the composition of the piece. Hugged to my manly and still pyjamed chest he provides homely comfort and a pair of uncritical ears as I practice my lines outloud, much to the bemusement of Mollie and Dylanne, the two Hounds of electrofried.
Preparation done, and two infusions of Mr PG's finest in hand I return to the electrofried bedchamber to greet my darling wife. A veritable cornucopia of Fathers' Day presentry is produced from beneath the bed, including a rather splendid tome on the humble VW camper van and a selection of Martin Parr postcards.
Our son calls to wish me a happy Fathers' Day. He's learning disabled, and we conduct a delightful semaphore discussion of the "hot off the press" appointment of Alec McLeish as manager to his beloved Aston Villa. Bless!
The morning passes in a blur. Greeting the baptism party in the car-park, the delivery of said homily, then an unforeseen and testing interval of some twenty minutes as we await the arrival of our Minister from another Church to wet the heads of two girls in floating angel dresses. Our House Group leader and yours truly plug the gap. A mixture of choruses, ad libs and a journey out into the congregation to ask the important question, "What are you thankful for today?" sees us safely through.
Mrs electrofried and I return home, and what joy awaits. Family is just so precious isn't it? Our two daughters and our two grandsons are there to greet us. More presents, and two lovely cards. The first is a study in blue by our eldest grandson, freshly dried from Thursday nursery. The second, two precious set of little handprints in red paint. How poignant that is ... just six months ago we might have expected but one.
I choke back the tears, and open the final present of the day. Oh my!!! Two guinea pig leads purchased blind from the internet, one red and one ...... cover your eyes in shame, dear Fluffy ..... pink!!
He bore it stoically as eldest grandson and I walk two boars to the lawn and a browse on early summer grass. What a day, indeed!!
Saturday 18 June 2011
Sunday 19 December 2010
a glimpse of sunshine ...
A short glimpse of sunshine to brighten a cold winter morning.
My daughter brings her two sons through to our bedroom. I haul eldest aboard, and he waits expectantly for the first biscuit of the day. Each morning for the last three weeks it's been the same ritual. The muffled footsteps of a sleep-suited toddler, the warming comfort of a hot mug of tea and then the book. "My Grandpa is AMAZING!"
We've read it together these past three weeks until we both know it by heart. He even knows the page on which to find the tiny mouse. "Eeek, eeek!", and the second biscuit of the day is consumed.
And then Twitch arrives. He's smiling, he's moving ... he's alive. Had you asked me a month ago if he would see Christmas, then I would shake my head sadly. Yet he is very much here - a glimpse of sunshine on a thin, wintery morning.
My daughter brings her two sons through to our bedroom. I haul eldest aboard, and he waits expectantly for the first biscuit of the day. Each morning for the last three weeks it's been the same ritual. The muffled footsteps of a sleep-suited toddler, the warming comfort of a hot mug of tea and then the book. "My Grandpa is AMAZING!"
We've read it together these past three weeks until we both know it by heart. He even knows the page on which to find the tiny mouse. "Eeek, eeek!", and the second biscuit of the day is consumed.
And then Twitch arrives. He's smiling, he's moving ... he's alive. Had you asked me a month ago if he would see Christmas, then I would shake my head sadly. Yet he is very much here - a glimpse of sunshine on a thin, wintery morning.
Saturday 30 October 2010
Returning home
I hold him in my hands and rock him to sleep, a spine curved now relaxed. We are safe here in dreams. I sway from side to side and sing a low Northern lullaby. And tears of joy form.
I hold him in my arms, and he fits. My daughter scoops up his drugs from the young nurse and we return home.
"I can sort it," she says.
And she does. She reaches for a pad of paper and a pencil, and fifteen minutes later she's sorted a Drug Programme, administered five separate medications and is feeding him. Immense.
I am in the hospital with my daughter, a chattering TV screen sequined and dancing on a Saturday night. My daughter danced once. I want her so dearly to dance again.
He fits, once more. The nurse comes and times him home. Eyes rolling and shrieks, then he's back with us.
Twitch
I hold him in my arms, and he fits. My daughter scoops up his drugs from the young nurse and we return home.
"I can sort it," she says.
And she does. She reaches for a pad of paper and a pencil, and fifteen minutes later she's sorted a Drug Programme, administered five separate medications and is feeding him. Immense.
I am in the hospital with my daughter, a chattering TV screen sequined and dancing on a Saturday night. My daughter danced once. I want her so dearly to dance again.
He fits, once more. The nurse comes and times him home. Eyes rolling and shrieks, then he's back with us.
Twitch
Sunday 17 October 2010
Tuesday 12 October 2010
the twitch texts - vol. 4
my daughter
Looks like twitch might be let out today! Yeah! Just got to see the expert n discuss a plan of action. What are the odds?
my daughter
The vampires are out to get him. They want his blood!
my friend, Ric
Hi. Just wanted to see how it's going. Ric
my daughter
Twitch successfully registered. Just picking up little lamper now and then home. G is already there.
my daughter
Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess with his medication. He has started fitting again. Just got to see how they want to change his medicine.
my daughter
I think they got bored with us here. Off to addenbrookes on mon if they have a bed for us.
my daughter
Well twitch is so excited about going to addenbrookes that he is trying to beat his record number of fits in a day. So far we are on 12 and his record is 14. Lets hope the extra meds kick in soon.
my daugher
Looks like the doctors really like the pictures twitch draws with his brain. Addenbrookes want to see them 2 so another eeg it is. They also dont think he is enough of a druggie so more medication as well. At least he wont need to dabble with drugs when he is older, he will already have the tee shirt!
my daughter
What a performer. Sleep, fits and awake time on the eeg. What a good boy!
my daughter
The hospital have a new tactic. Turn twitch luminous! His medicine is bright yellow and stains everything it touches, clothes and skin. Twitch has a lovely shade of lipstick at the minute.
Looks like twitch might be let out today! Yeah! Just got to see the expert n discuss a plan of action. What are the odds?
my daughter
The vampires are out to get him. They want his blood!
my friend, Ric
Hi. Just wanted to see how it's going. Ric
my daughter
Twitch successfully registered. Just picking up little lamper now and then home. G is already there.
my daughter
Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess with his medication. He has started fitting again. Just got to see how they want to change his medicine.
my daughter
I think they got bored with us here. Off to addenbrookes on mon if they have a bed for us.
my daughter
Well twitch is so excited about going to addenbrookes that he is trying to beat his record number of fits in a day. So far we are on 12 and his record is 14. Lets hope the extra meds kick in soon.
my daugher
Looks like the doctors really like the pictures twitch draws with his brain. Addenbrookes want to see them 2 so another eeg it is. They also dont think he is enough of a druggie so more medication as well. At least he wont need to dabble with drugs when he is older, he will already have the tee shirt!
my daughter
What a performer. Sleep, fits and awake time on the eeg. What a good boy!
my daughter
The hospital have a new tactic. Turn twitch luminous! His medicine is bright yellow and stains everything it touches, clothes and skin. Twitch has a lovely shade of lipstick at the minute.
Saturday 9 October 2010
The Twitch Texts - Vol 3
my daughter
Just spoken to doc. They have finally decided twitch has epilepsy. They might give him steroids to control the twitching. They still need to talk to addenbrookes and find out what they advise but doc is hoping to discharge us and just go in for tests n stuff.
my elder brother
Thanks for keeping me up to date - hopefully it will be something they can control and he might grow out of it. Wish J all the best from me and L.
my daughter
Well twitch is going to be superman cos he is going on steroids to control the epilepsy. Lets hope the side effect of hunger doesnt make him feed any more or i will be permanent milk bar! Just a few more tests and we should be home.
my daughter
Twitch successfully registered. Just picking up W now and then home. G is already there. Love you so much. J
my daughter
Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess around with his medication. He has just started fitting again. Just got to see how they want to change his medicine.
my daughter
Twitch has decided home is really boring so mommy had to take him back to hospital cos his fits started again. I think he has a secret love of needles despite his protests.
my daughter
Twitch is a very clever boy. He has been drawing some really pretty pictures with his brain on the eeg for the men in the white coats to look at. Just go to wait n see what they make of them.
my daughter
The hospital love twitch so much they want him in for 2 weeks while they wean our little druggie off the steroids. Bored already!
my daughter
Twitch has decided he loves hospitals so much he saved his first smile for our nurse this morning. What about his poor mother who has fed him n even changed his foul bum! No the nurse got the smile.
Just spoken to doc. They have finally decided twitch has epilepsy. They might give him steroids to control the twitching. They still need to talk to addenbrookes and find out what they advise but doc is hoping to discharge us and just go in for tests n stuff.
my elder brother
Thanks for keeping me up to date - hopefully it will be something they can control and he might grow out of it. Wish J all the best from me and L.
my daughter
Well twitch is going to be superman cos he is going on steroids to control the epilepsy. Lets hope the side effect of hunger doesnt make him feed any more or i will be permanent milk bar! Just a few more tests and we should be home.
my daughter
Twitch successfully registered. Just picking up W now and then home. G is already there. Love you so much. J
my daughter
Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess around with his medication. He has just started fitting again. Just got to see how they want to change his medicine.
my daughter
Twitch has decided home is really boring so mommy had to take him back to hospital cos his fits started again. I think he has a secret love of needles despite his protests.
my daughter
Twitch is a very clever boy. He has been drawing some really pretty pictures with his brain on the eeg for the men in the white coats to look at. Just go to wait n see what they make of them.
my daughter
The hospital love twitch so much they want him in for 2 weeks while they wean our little druggie off the steroids. Bored already!
my daughter
Twitch has decided he loves hospitals so much he saved his first smile for our nurse this morning. What about his poor mother who has fed him n even changed his foul bum! No the nurse got the smile.
The Twitch Texts - Vol 2
my daughter
woohoo twitch had a fit free night. They just have to get his meds right n then we can come home n just return for tests.
my daughter
Woohoo. Twitch getting discharged today! Wonder if I will too?
my daughter
Twitch n mom going home today!
my daughter
Hi did you just ring. I got a missed call and private number.
my daughter
Mystery solved. It was the hospital. Twichs meds r at right levels.
my daughter
Just to let you know twitch back in hospital. Fits are not stopping. They are admitting him overnight for observation and we will see what the morning brings.
my daughter
Just seen doc. They want to give twitch a party and look at him under uv light n also contact cambridge for some advice cos the seizure expert here just retired. They gave him extra meds last night n since then only 2 fits so at least thats good.
my wife
Twitch had fewer fits today - double meds. I'm off to J's for the night . J hoping discharge tomorrow. If so I will come home then x
my daughter
Twitch has been a good boy so has been given an overnight pass! He better behave at home!
my daughter
Well they finally found out that young twitch has an abnormal brain. He made pretty patterns for the eeg man. Just a shame they dont know what the patterns mean. Will find out tomo when they talk to the experts at addenbrookes.
woohoo twitch had a fit free night. They just have to get his meds right n then we can come home n just return for tests.
my daughter
Woohoo. Twitch getting discharged today! Wonder if I will too?
my daughter
Twitch n mom going home today!
my daughter
Hi did you just ring. I got a missed call and private number.
my daughter
Mystery solved. It was the hospital. Twichs meds r at right levels.
my daughter
Just to let you know twitch back in hospital. Fits are not stopping. They are admitting him overnight for observation and we will see what the morning brings.
my daughter
Just seen doc. They want to give twitch a party and look at him under uv light n also contact cambridge for some advice cos the seizure expert here just retired. They gave him extra meds last night n since then only 2 fits so at least thats good.
my wife
Twitch had fewer fits today - double meds. I'm off to J's for the night . J hoping discharge tomorrow. If so I will come home then x
my daughter
Twitch has been a good boy so has been given an overnight pass! He better behave at home!
my daughter
Well they finally found out that young twitch has an abnormal brain. He made pretty patterns for the eeg man. Just a shame they dont know what the patterns mean. Will find out tomo when they talk to the experts at addenbrookes.
Sunday 3 October 2010
The Twitch Texts - Vol 1
A special gift called Twitch. His story unfolding in a series of text messages ...
My wife
Twitch at 4:34
My elder brother
Congratulations. Say hello from me, L and the family.
My cousin
So this is what happens when the computer and the answerphone pack up! I'm all agog! Bigtime congrats 2 all. Ouch I bet! Will ring asap. Much love 2 all. Z'n'themxxx
My younger brother
Many congratulations, hope Mum and baby doing well. Pass on our best wishes to everyone. I can tell Mum if you want.
My wife
Arrived at the barn. Will go to hosp after cuppa. How's things with you? x
My daughter
Hi dad. On the ward at the minute so cant use phone for calls. It sounds like you are having some quality time with gran. Give her a big gentle hug from me. Twitch is doing well. He is off his iv fluids now so just me feeding him which is nice. He is still hooked up to various monitors but is much more peaceful. He hasn't had any fits since yesterday. Love you lots. J
My daughter
Twitch has had a good night. Feeding every hour and i half the little piglet. Hes much more lively and alert now so they have to keep replacing the sticky bits on his monitors.
My daughter
Just to add to our fun and games W now has croup! D had him down the emergency docs last night. He is fine now.
My daughter
Twitch just had another fit. Only lasted 20 secs n didnt set monitors off.
My daughter
Doc been round n didnt seem worried about fit. Just wants to carry on with obs. All bloods normal.
My wife
Staying at J's from tonight. Bringing W home wed for unknown period xx
My daughter
Twitch has had some more fits in the night but he is ok. They still dont know what is causing them. It hasnt stopped him being a greedy monster though. He likes his food every 2 hours with the odd snack in between!
My daughter
Hi. Just sent you a general update on Twitch. How is gran? Sounds like you had a good trip down memory lane. I am so glad you have been able to spend some quality time with her. Give her more hugs from me.
My daughter
Twitch had a cluster of 3 fits close together last night despite being given a sedative. Just waiting to see doc on ward round to see what is going to happen. He should be having a head scan later today. Let's hope they find a brain!
My wife
At hosp awaiting head scan. MRI and EEG later in week. Drs not overly concerned at this stage. Will be back later than thought as staying for scan x
My wife
Today's tests finished. Decided to travel wed am. Speak later x
My daughter
Well we can now successfully confirm that Twitch does have a brain n that it does work. Past that we are still clueless and he is still fitting although he is now on daily meds to help control the fits. Just need it to start working!
My daughter
Well they r still waiting for test results but think it may just be one of those things he will grow out of. They want him to have an mri and a few more days of drugs to check he is getting the right levels n then we may be allowed out. Dont you love the doctors never say anything definite!
My daughter
Twitch went for mri yesterday. Behaved himself until mom bled all over the floor. He cant take her anywhere!
My daughter
Just saw doctor about Twitch. His brain is normal as far as they can tell. They want to get fits under control. They will let us home just coming back in for tests to see if they can find the cause. They think the meds r working even though he is having more fits as they are shorter. He finishes his antibiotics tomo.
My wife
Twitch at 4:34
My elder brother
Congratulations. Say hello from me, L and the family.
My cousin
So this is what happens when the computer and the answerphone pack up! I'm all agog! Bigtime congrats 2 all. Ouch I bet! Will ring asap. Much love 2 all. Z'n'themxxx
My younger brother
Many congratulations, hope Mum and baby doing well. Pass on our best wishes to everyone. I can tell Mum if you want.
My wife
Arrived at the barn. Will go to hosp after cuppa. How's things with you? x
My daughter
Hi dad. On the ward at the minute so cant use phone for calls. It sounds like you are having some quality time with gran. Give her a big gentle hug from me. Twitch is doing well. He is off his iv fluids now so just me feeding him which is nice. He is still hooked up to various monitors but is much more peaceful. He hasn't had any fits since yesterday. Love you lots. J
My daughter
Twitch has had a good night. Feeding every hour and i half the little piglet. Hes much more lively and alert now so they have to keep replacing the sticky bits on his monitors.
My daughter
Just to add to our fun and games W now has croup! D had him down the emergency docs last night. He is fine now.
My daughter
Twitch just had another fit. Only lasted 20 secs n didnt set monitors off.
My daughter
Doc been round n didnt seem worried about fit. Just wants to carry on with obs. All bloods normal.
My wife
Staying at J's from tonight. Bringing W home wed for unknown period xx
My daughter
Twitch has had some more fits in the night but he is ok. They still dont know what is causing them. It hasnt stopped him being a greedy monster though. He likes his food every 2 hours with the odd snack in between!
My daughter
Hi. Just sent you a general update on Twitch. How is gran? Sounds like you had a good trip down memory lane. I am so glad you have been able to spend some quality time with her. Give her more hugs from me.
My daughter
Twitch had a cluster of 3 fits close together last night despite being given a sedative. Just waiting to see doc on ward round to see what is going to happen. He should be having a head scan later today. Let's hope they find a brain!
My wife
At hosp awaiting head scan. MRI and EEG later in week. Drs not overly concerned at this stage. Will be back later than thought as staying for scan x
My wife
Today's tests finished. Decided to travel wed am. Speak later x
My daughter
Well we can now successfully confirm that Twitch does have a brain n that it does work. Past that we are still clueless and he is still fitting although he is now on daily meds to help control the fits. Just need it to start working!
My daughter
Well they r still waiting for test results but think it may just be one of those things he will grow out of. They want him to have an mri and a few more days of drugs to check he is getting the right levels n then we may be allowed out. Dont you love the doctors never say anything definite!
My daughter
Twitch went for mri yesterday. Behaved himself until mom bled all over the floor. He cant take her anywhere!
My daughter
Just saw doctor about Twitch. His brain is normal as far as they can tell. They want to get fits under control. They will let us home just coming back in for tests to see if they can find the cause. They think the meds r working even though he is having more fits as they are shorter. He finishes his antibiotics tomo.
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