We're home from hospital (hurrah, huzzah, and much additional rejoicing), we have our own beds, and I have the opportunity to indulge myself with a long phone call to Friend.
My friend is slowly watching her mother slip away as Alzheimer's alters her personality, and struggling to remember the mother she used to know so well, who is currently being replaced by someone who is nearly, but not quite, entirely unlike herself. It's hard.
Hard too is my friend's struggle to contain her own embarrassment at some of her beloved mother's kinks and quirks; traits being magnified and shattered under dementia's kaleidoscope. Trying to reach beneath the surface and decide what's important; is it my friend's embarrassment, or is it how embarrassed her mother would have been to see her doing some of the things she is starting to do now, or does none of this matter as long as her mother is happy and not hurting anyone else?
It turns out my friend has had good practice in this, and in working things out, she has given me another precious memory.
When, at 26, I gained an 11 year old daughter, I immediately stepped out of sync with friends and family. That my daughter was severely disabled lessened the gap for some, but created an impossibly wide one for others. It was the start of a general reshuffling of relationships; an unsettling time, but one which has made my life today do much deeper and richer than I could ever have imagined.
Friend is one of the few pre-Goldie friends who made it through to the after years. She has no children of her own - I don't think there is a link! But tonight she reminded me of her own baptism of fire into this brave new world of mine.
Goldie and I lived in a terrace house, close to the town centre. Friend was visiting, and it was a beautifully sunny summer's day. I had dressed Goldie in a newish outfit (not purchased by my); white jeans and a sparkly white T-shirt. With her hair red gold in the sun, she looked particularly angelic, and she was definitely up for a walk into town.
We did whatever we needed to do in town, and then went to the Abbey Meadows to feed the ducks and find an ice cream.
With hindsight, giving Goldie a chocolate ice cream was possibly not the wisest plan.
But she loved it. Arms waving, fingers trembling, hair shaking, she spread that ice cream far and wide, eating enough to give herself a sugar high, and smearing the rest over clothes, body and chair, with a glee which only Goldie could ever truly produce.
Friend looked on in horror as white jeans gathered ice cream drips and dribbles, and bits of cone found their way into eyebrows and ears. And Goldie sang and shrieked, rocked and danced in the sun, attempting to grab anyone close enough to join in the fun.
It being summer, the paddling pool was open. It was warm enough, do Goldie and I dunked ourselves, fully clothed, in an attempt to rinse off the worst of the chocolate goo. This had the rather unfortunate effect of spreading dilute chocolate ice cream across parts not formerly coated, whilst plastering Goldie's golden halo to her face. Oh, and dissolving the sun cream in watermarks across her face.
It is here where Friend's experience and my own begin to diverge. Because once reminded, I can picture Goldie at this point. And she is radiant. She has seized the day, and her face is alight with pure joy. The chocolate and the wet and the general chaos are just echoes of the day, proof that she has extracted every ounce of enjoyment from the experience.
Friend sees a loud mess. Being pushed by an adult also no longer even pretending to be in any way groomed or organised.
Goldie sees an opportunity. And as Friend tries to work out how she can possibly avoid associating with either of us as we walk back through town to our house, and as I think about what we still need to buy for tea, Goldie hears the silence and decides to entertain us.
Now Goldie loved her stories. By which I mean, she loved Her stories. Particular versions of particular tales, always told in the same format with the same dramatic pauses. She had them off by heart. I still have them off by heart. And on this occasion, Goldie decided to retell the story of the Three Billy Goats Called Gruff.
This was one of Goldie's useful tales. Stand in front of her in a shop, blocking her view, and you might find yourself being told "be off with you, ugly troll...much fatter than I am." But today another part of the story held her interest. And to Friend's utter mortification, as We walked through the crowded town centre, chocolate and grass stained, filthy but very happy, Goldie held her long hands out in front of her, waves her fingers in front of her face, stimming on the pattern between light and shade on such a wonderfully sunny day, and celebrated the fact the billy goats could go "Trip trap, trip trap, over the ricketty racketty bridge, into the meadow, to eat the sweet grass." Only, being Goldie, she mumbled most of the sentence, meaning the only audible parts of her speech were "Trip!" (mutter mutter incomprehensible) "Sweet Grass!" (wave hands, rock, screech, repeat).
It was, then, a defining moment for Friend, who had to attempt to step out of her acute embarrassment and into seeing Goldie as a girl totally happy in her own skin. She could, as so many others did, have quietly opted out of our lives, or found ways to keep up our friendship without being humiliated in public. But instead she opened her eyes and tried to enter into Goldie's world. A little bit. And still very thankful this was happening in our home town and not hers.
It is, now, one of her fondest memories of Goldie. And it's helping her to review the way she sees her mother. I hope it helps.
And as I write this, although it really wasn't planned this way, I realise that today is May 31st, and that it was on this date 13 years ago that Goldie moved out of her children's home and into my life. I think it's fitting we should remember a happy Goldie day on one of our happiest days.
Tia
Friday, 31 May 2013
Wednesday, 29 May 2013
2 steps forwards...
We aren't home. TLP isn't able to eat or drink very much, so is back on a drip. We have four sets of doctors all offering different theories as to why. I think the spinal surgeon who did the operation's theory is probably the most likely, and most of the other doctors seem to agree it is at least possible. However she's now been passed over to a different team who think things slightly differently, so we shall see.
Her spine looks great. She's grown a lot - 3-4 inches I think. Her pain is pretty well under control. The incisions are healing nicely, the X-rays look great, and she's up and in her chair and getting busier all the time.
She managed to eat a small amount today, and only half of it found it's way back to us again. And (gross description alert; don't read if you don't do bodily fluids) last night's vomit was a lovely pale yellow and orange rather than the deep dark green and black bilious yuck she's had all week. Which is, I think, good.
Sentences I never thought I'd say though "Yes, it's a very pretty pink. But put it back in your tummy now please."
Lots of air erupting from everywhere which is great, and a softer although still swollen and tender stomach. But progress. I think.
Tia
Her spine looks great. She's grown a lot - 3-4 inches I think. Her pain is pretty well under control. The incisions are healing nicely, the X-rays look great, and she's up and in her chair and getting busier all the time.
She managed to eat a small amount today, and only half of it found it's way back to us again. And (gross description alert; don't read if you don't do bodily fluids) last night's vomit was a lovely pale yellow and orange rather than the deep dark green and black bilious yuck she's had all week. Which is, I think, good.
Sentences I never thought I'd say though "Yes, it's a very pretty pink. But put it back in your tummy now please."
Lots of air erupting from everywhere which is great, and a softer although still swollen and tender stomach. But progress. I think.
Tia
Sunday, 26 May 2013
Mobile again
4 days post-op, off all lines and drips and monitors, out of bed and on the move! She amazes me. Next step, find a hairdresser, as I've chopped at least a foot off with green disposable stitches, not my finest styling ever.
Back pain generally pretty well controlled by a paracetamol, codeine and diclofenic cocktail. Sadly her guts are still distinctly under-impressed, and most of what she eats and drinks makes it way north not south, whilst an ever-increasing mound of air rounds her stomach out and has doctors drumming on it in joy at hearing something so hollow.
Trump-juice cocktail is harder to track down, but it isn't slowing her down too much.
That said, last night was particularly hideous due to blocked catheters and vomited pain meds, so I'm hoping for a much quieter night tonight.
Tia
Back pain generally pretty well controlled by a paracetamol, codeine and diclofenic cocktail. Sadly her guts are still distinctly under-impressed, and most of what she eats and drinks makes it way north not south, whilst an ever-increasing mound of air rounds her stomach out and has doctors drumming on it in joy at hearing something so hollow.
Trump-juice cocktail is harder to track down, but it isn't slowing her down too much.
That said, last night was particularly hideous due to blocked catheters and vomited pain meds, so I'm hoping for a much quieter night tonight.
Tia
Thursday, 23 May 2013
Stupid
Stupid is tLP's word of the day.
It's all stupid. Surgery was a stupid idea, HDU is stupid, nurses are stupid, doctors are stupid, and I am possibly the stupidest one of all.
I can understand that. A bunch of doctors sliced her open at neck and pelvis, slid rods down under her skin, and screwed them into her spine in places. It's sore. And the morphine makes her itch, and itching makes her wriggle, and wriggling jiggles the sore bits, and then it's more sore. And a cuddle might make it better but we're all telling her to stay still and not sit up.
We're all very stupid and she hates us.
But - and here's where I hope blogger on the phone doesn't shuffle the photos - take a look at her back in the blue tshirt, a couple of years ago. Take a look at her back minus the tshirt, 12 months ago. Consider the fact she has grown shorter, not taller, since then. And then take a look at the picture of her back behind the pillows currently supporting it.
That's quite a difference.
I hope she'll forgive us when she can get back in her chair and see for herself how she has grown.
It might take a lot of salty crisps though.
Tia
Monday, 20 May 2013
On her Birthday.
Butterfly Beth
So delicate, and yet
Your wings fluttered
To great effect.
Beautiful Beth
Your face serene
All peace and light
You showed what love means.
Baptised Beth
Washed in worship waves
Protesting when
The words got in the way.
Bereft of Beth
How can this be?
Broken no more, whole and perfect and pure.
But we break as we see you fly free.
So delicate, and yet
Your wings fluttered
To great effect.
Beautiful Beth
Your face serene
All peace and light
You showed what love means.
Baptised Beth
Washed in worship waves
Protesting when
The words got in the way.
Bereft of Beth
How can this be?
Broken no more, whole and perfect and pure.
But we break as we see you fly free.
Saturday, 18 May 2013
The force is strong strange in these two.
Take one busy, active, intelligent six year old boy who lives, sleeps and breathes Star Wars. Add one determined eight year old girl who has no idea about anything Star Wars related, apart from the fact her friend really really likes it. I should probably rectify that. Maybe.
Anyway, it's not a particularly likely partnership. But somehow it works
Biscuits and cakes get baked and sampled and smeared across the kitchen floor
Neighbours and passersby are perturbed by the appearance of two Jedis; one who doubles as a Ninja without extra pay.
The grass gets crushed into submission, to teach it to grow when the gardener is away.
Miss Mog gets to sit and listen and giggle mightily all day long.
And I have the satisfaction of a small child fast asleep before half past six in the evening.
I'll spare the Ninja Jedi the photos of his stint as hairdresser, good as he is with a very girly purple comb.
And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.
But a good time was definitely had by all. Friendship. Strange but true.
I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia
Anyway, it's not a particularly likely partnership. But somehow it works
And I have the satisfaction of a small child fast asleep before half past six in the evening.
And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.
But a good time was definitely had by all. Friendship. Strange but true.
I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia
Wednesday, 15 May 2013
Monday, 13 May 2013
Mass Observation.
Linky here http://www.massobs.org.uk/12may
The Mass Observation Archives have asked as many people as possible to log May 12th, in detail, for their records. Something which they started doing in 1937, for the Coronation.
I've sent ours in, but I thought perhaps people here might be interested in a whole day rather than just selected episodes from our life. It was a fairly average Sunday for us. So here it is, edited to remove comments on neighbours and bits of other people's stories.
I am 39, and a single adoptive parent to two girls (8 and 10), who have profound disabilities (cerebral palsy and Spina bifida) and complex medical needs (epilepsy, spasms, neuropathic bowel and bladder, central hypoventilation amongst others). M is unable to talk but can indicate yes and no with her tongue, A is very able to talk and has learning disabilities.
We live in a three bedroom ground floor ex-council flat in a nice town in Oxfordshire. We have two cats (a ragdoll and a Norwegian forest) and an assortment of tropical fish.
We live in the town where I grew up, and A attends my old primary school with a lot of support. M attends a local special school My parents live a 10 minute walk away, and we all attend the local church where I was Baptised as a baby, confirmed as a teenager, where my brother was married and where funeral services were held for my grandmother and my oldest daughter.
Woke up at 5.30am, not sure if my ears were ringing or if my daughter M's SATs monitor was alarming (same pitch). She was awake and smiling, so I gave her her morning meds (Tizanidine, Glycopyronium Bromide, Clobazam, Vigabatrin and Carbemazepine), adjusted her CPAP mask to stop an air leak, and went back to bed.
6.30am M woke me again, this time very very unhappy. Loud cries, lots of spasm, SATs dropping. Released her CPAP mask, vented her gastrostomy, rolled her over and changed her pad.
Still very uncomfortable, gave her a bisacodyl suppository and lifted her onto her special toilet seat. Gave her ibuprofen and paracetamol, still very uncomfortable.
Made her breakfast - baby cereal, fruit smoothie and milk, and pushed it through her gastrostomy tube, together with her Movicol. She went to sleep.
Fed cats (Royal Canin Fur and Skin) and fish (Tetra nibbles and Aquarians flakes).
7am, A woke up. Unhooked her from her ventilator, sat her up in bed, and gave her her morning meds (domperidone and oxybutinin). Rubbed her shoulders as she fought against her morning vomit. Helped her remove her overnight catheter from her Mitrofanoff.
Lifted her onto her toilet seat, pushed 490mls water through her caecostomy, Passed her her glasses, tray and iPad, and went to put the kettle on.
Made a large strong mug of coffee, swept up yesterday's mud and beads from the floor, did the washing up, and went to get dressed just as our morning carer arrived.
Put Radio 4 on (morning service), made a second cup of coffee but forgot to drink it. Quick breakfast - salmon and cream cheese sandwich as salmon goes off today. Yum. Found clothes for M - nice loose dress as no result from suppository and no morning wee either. Lifted her back into bed, got her dressed - very very sore still from recent round of antibiotics.
Put M in her wheelchair, found a scarf to bind her right arm to her body (she has recently had Botox injections into her shoulder to try and stop her arm from being stuck angled outward with her hand behind her head; the scarf encourages the botoxed muscles to stretch), put her glasses on, adjusted her hips to try and make her more comfortable.
M very distressed again and more spasm. Still no result from suppository and no wee, but gave her Buccal Buscopan which helped relieve the pain.
Listened to protracted negotiations between A (8) and our morning carer. Carer comes for 1hour15 minutes every morning except Saturday, and helps me to get both girls ready for the day.
Argument this morning about hair brushing, catheterisations, hoisting, bottom wiping, and giving breakfast. No tears and screams, just head slapping, shouts and frustrations. A good(ish) morning.
Carer brushed M's hair, sorted both girls' teeth, reported bleeding mouth*, recorded her visit in book and left. A signed the book for me - first and last name, all spelt right, very neat.
Blankets and cardigans as not very warm today. Then off to church - cats followed us halfway but stopped before the road, thankfully.
Five minute walk to church made longer as A in her powerchair decided to push M in her manual wheelchair.
Dropped A at Godzone (Sunday school), and then into church with M. A good day today, accesswise. Both doors open at the main entrance, so able to walk in straight away, just like everyone else, not wait on the ramp whilst greeters try to work out how to open the second door. I like it when they've thought about the fact we will be coming before we get there; it makes me feel as though we are a full part of the body of Christ, not an awkward addition.
Into church itself, and two men lined up to move seats to make space for M. Lovely. If she's going to choose to come to church rather than Godzone every week then we might need to think about giving her a permanent spot, but for now, this works well. Again, we feel welcome and included - unlike when I have to hover and somehow shift seats myself whilst blocking the aisle with M's chair.
Joined in our row by friends and then my mother too.
A good service. Lots of good songs - Never Let Go, How Great Thou Art, the Lord is Gracious and Compassionate, and a couple more I'd been singing on the way into church before knowing they'd be playing. Hurrah. M sang along to How Great Thou Art, but confined herself to listening and having seizures during the rest of the songs. Tim Davis (Vicar) preaching on Going on being filled with the Holy Spirit. Challenge - to do nothing without first waiting for God to come with us.
Communion made more interesting by the large new stage at the front of church; not much space for wheelchairs to squeeze past. But we managed, with help from friends and vicars and curates and staff, and it wasn't too much of a circus. And friends came up with a better plan for next time, so that's all good. Next challenge will be to make it possible for M to receive communion rather than just a blessing, as she seems to be indicating she might like to. Puréed bread and wine? Or just a small taster? Will have to ponder that, along with thinking about practicalities of Confirmation, if that's what she decides she wants. Am unconvinced of theological necessity, but as we attend an Anglican church, perhaps we should identify as Anglicans as well as Christians. Always Christians first.
Coffee after church with friends; A played outside with her friends, and M stayed with us.
Back home and a round of pad changes and catheters, a quick packet of crisps for A to keep the wolf from the door, a stretch for M, then both girls watched CBeebies on the iPad and I caught up on emails, Facebook, and a special needs forum.
A popped out to play with the cats, and we met our new neighbours-to-be - the flat opposite ours has been empty for three weeks, since the death of its former occupant. Now it looks as though a family who currently live upstairs around the corner will be moving 200 yards down the road and into a ground floor flat. Much more sensible as they have mobility difficulties. They tell me the council is going to transform their front garden into a parking space; very sensible and will definitely help with the parking problems in our cul-de-sac. Won't be for a couple of months though, so I shall believe it when I see it.
Back inside, another catheter for A and then finally Grandad (my father) poked his head around the door, having finished with the second service at church. Coats and blankets on, pudding collected, and we walk around to my parents' house for lunch.
A glass of sherry and some cheese straws, white wine with chicken casserole, carrots, broccoli and scalloped potatoes, and then salted caramel chocolate tart with crême fraîche and bananas. Very delicious.
M had roast beef, apple, carrot, banana, kiwi, caramel sauce, and bread puréed and pushed through her tube; a lick of the chicken casserole and half a teaspoon of the chocolate caramel pie. A good meal for her.
Coffee in the sitting room, and a silly game with clockwork Grannies on Zimmer Frames and Grandads with walking sticks. Snakes and ladders, and then triominos, and finally a pencil and paper for A. Grandad read papers and dozed; Grannie and I entertained the girls and digested dinner.
A diary check, a card written for the newest baby in the family (no name yet), and rough plans drawn up for a special table for A - she is having spinal surgery soon and will need a higher table afterwards.
Then wrapping up as waterproofily as possible, and a quick march home through the rain.
4.30pm and tea for A - sausage roll, cucumber and coleslaw. Girls watch more CBeebies - Postman Pat, Me Too, Chuggington.
I make M's blends - tea tonight and lunch tomorrow. Sausage rolls, marmite cauliflower, milk, orange juice, baked potato and prunes. Bit of a mixed meal but all food groups covered and should help her bowels along. Mixed up meds for next 24 hours, restocked drugs bag and school bag.
5.30pm. A into bath. Hair wash. Matt Redman "Sing Like Never Before" album on very loud. Gave Imi her tea, helped her cough.
6pm. Carer returns, lift M onto bench, hand over so carer can do shower and hair wash as I give A her evening meds (domperidone, oxybutinin, and lanzoprezole), and post her into bed. In dwelling catheter, next chapter of our bedtime book (Allen Ahlberg The Giant Baby), a God story (parable of the seeds), prayers, ventilator, snuggles, wheelchair on charge and goodnight. Phew!
Carer hoists M back into chair, dries and plaits mad hair, then hoists into bed, signing off at 7.15 having hooked up SATs monitor and CPAP, sorted music (Vinesong "Isn't He?") and sorted positioning pillows. We have help in the evenings three evenings a week; this is less useful than it was as both girls are now usually very tired by the time the carer comes (7pm on weekdays) and would rather be in bed already by that time.
Feed cats, separate fighting cats, do the washing up, avoid looking too hard at messy kitchen, debate doing another load of washing, but instead Febreeze the wheelchair covers (which have been washed so often since November that they are nearly falling apart already and have gone baggy) and stack the rest of the washing by the washing machine.
Grab some sewing I'm doing and continue to unpick last night's mistake. Mistake took two minutes to see in, and has so far taken two hours to unpick. Am only halfway there too. Debating point, but I will enjoy using finished item knowing I created it all by myself.
Girls all quiet; I gave M her evening medication (tizanidine, glycopyronium bromide, clobazam, Vigabatrin, sodium docusate, carbemazepine, epilim), kisses and prayers and a goodnight snuggle.
Did another two hours unpicking and now have just one inch left. Have had to stop as elbow and wrist cramping. Watched a BBC programme on hoarders and resolved to do something about piles of clutter in my bedroom. Probably won't, though. Debated grabbing more of the chocolate tart (Mum having kindly sent it home with us), but settled for a packet of crisps and a glass of wine instead. Not terribly healthy, but nicely portable, minimal effort required, and minimal mess made.
Now 9.20pm, I have done a final round - all breathing machines working correctly, all emergency medication within easy reach, cats asleep on armchairs, girls asleep in bed, washing still drying on the racks.
A quick diary check reveals a quiet week ahead; no hospital appointments, no school appointments, just meeting a friend for coffee and meeting more friends for lunch. Will wait to see what the week actually brings. It is rare for M to remain well all week; she usually needs a day off somewhere to rest from the demands of school.
Clothes more or less sorted for the morning (identified anyway), it is now 21.50, I am in bed, and about to do my last nighttime bits and pieces (Internet, bible study which didn't get done this morning, set alarms) before settling down for the night.
*M has a loose tooth which catches on her lip. Dentist will pull it (not falling out as anticonvulsants have caused gums to grow too much) but wants to wait six months. I understand her concerns over unnecessary interventions, but why should my daughter be left in pain for that long?
Reflections on the day.
Today was a pretty average Sunday. Whilst I might have a glass of wine in the evening on a different day, I don't ordinarily drink with lunch except on a Sunday.
Today M only used three incontinence pads. This is good as we are only allowed four per day, so I now have one in hand for days when she is unwell and gets through more than her ration. But it is also bad, because it means she held her urine too long, and then flooded through, making more washing for me to do.
Today M did need painkillers, but did not need oral diazepam for muscle spasms or rectal diazepam for seizures. Her seizure activity was pretty minimal; a few episodes of bigger seizure activity rather than the hour long runs she had on Saturday and Friday.
M did not require suction, a nebuliser or supplemental oxygen today.
A only threw one item and hit no one. She did scream, cry, hit herself and throw some impressive tantrums, but managed to keep a bit of self control. She did complain of back ache, but refused painkillers.
I lifted A (25kg) 11 times, hoisted her 1ce, and carer hoisted her twice.
I lifted M (30kg) 6 times, and our carer hoisted her twice.
Unfortunately, M's sling was wet, and she cannot sit on her spare sling all day. So I could have avoided three of her lifts, but the others were unavoidable. I could have hoisted A this morning, skipping one lift, and twice more this evening. Her other lifts were at my parents' house though, where hoisting is not a possibility.
My back aches!
Tia.
“I donate my 12th May diary to the Mass Observation Archive. I consent to it being made publicly available as part of the Archive and assign my copyright in the diary to the Mass Observation Archive Trustees so that it can be reproduced in full or in part on websites, in publications and in broadcasts as approved by the Trustees
The Mass Observation Archives have asked as many people as possible to log May 12th, in detail, for their records. Something which they started doing in 1937, for the Coronation.
I've sent ours in, but I thought perhaps people here might be interested in a whole day rather than just selected episodes from our life. It was a fairly average Sunday for us. So here it is, edited to remove comments on neighbours and bits of other people's stories.
I am 39, and a single adoptive parent to two girls (8 and 10), who have profound disabilities (cerebral palsy and Spina bifida) and complex medical needs (epilepsy, spasms, neuropathic bowel and bladder, central hypoventilation amongst others). M is unable to talk but can indicate yes and no with her tongue, A is very able to talk and has learning disabilities.
We live in a three bedroom ground floor ex-council flat in a nice town in Oxfordshire. We have two cats (a ragdoll and a Norwegian forest) and an assortment of tropical fish.
We live in the town where I grew up, and A attends my old primary school with a lot of support. M attends a local special school My parents live a 10 minute walk away, and we all attend the local church where I was Baptised as a baby, confirmed as a teenager, where my brother was married and where funeral services were held for my grandmother and my oldest daughter.
Woke up at 5.30am, not sure if my ears were ringing or if my daughter M's SATs monitor was alarming (same pitch). She was awake and smiling, so I gave her her morning meds (Tizanidine, Glycopyronium Bromide, Clobazam, Vigabatrin and Carbemazepine), adjusted her CPAP mask to stop an air leak, and went back to bed.
6.30am M woke me again, this time very very unhappy. Loud cries, lots of spasm, SATs dropping. Released her CPAP mask, vented her gastrostomy, rolled her over and changed her pad.
Still very uncomfortable, gave her a bisacodyl suppository and lifted her onto her special toilet seat. Gave her ibuprofen and paracetamol, still very uncomfortable.
Made her breakfast - baby cereal, fruit smoothie and milk, and pushed it through her gastrostomy tube, together with her Movicol. She went to sleep.
Fed cats (Royal Canin Fur and Skin) and fish (Tetra nibbles and Aquarians flakes).
7am, A woke up. Unhooked her from her ventilator, sat her up in bed, and gave her her morning meds (domperidone and oxybutinin). Rubbed her shoulders as she fought against her morning vomit. Helped her remove her overnight catheter from her Mitrofanoff.
Lifted her onto her toilet seat, pushed 490mls water through her caecostomy, Passed her her glasses, tray and iPad, and went to put the kettle on.
Made a large strong mug of coffee, swept up yesterday's mud and beads from the floor, did the washing up, and went to get dressed just as our morning carer arrived.
Put Radio 4 on (morning service), made a second cup of coffee but forgot to drink it. Quick breakfast - salmon and cream cheese sandwich as salmon goes off today. Yum. Found clothes for M - nice loose dress as no result from suppository and no morning wee either. Lifted her back into bed, got her dressed - very very sore still from recent round of antibiotics.
Put M in her wheelchair, found a scarf to bind her right arm to her body (she has recently had Botox injections into her shoulder to try and stop her arm from being stuck angled outward with her hand behind her head; the scarf encourages the botoxed muscles to stretch), put her glasses on, adjusted her hips to try and make her more comfortable.
M very distressed again and more spasm. Still no result from suppository and no wee, but gave her Buccal Buscopan which helped relieve the pain.
Listened to protracted negotiations between A (8) and our morning carer. Carer comes for 1hour15 minutes every morning except Saturday, and helps me to get both girls ready for the day.
Argument this morning about hair brushing, catheterisations, hoisting, bottom wiping, and giving breakfast. No tears and screams, just head slapping, shouts and frustrations. A good(ish) morning.
Carer brushed M's hair, sorted both girls' teeth, reported bleeding mouth*, recorded her visit in book and left. A signed the book for me - first and last name, all spelt right, very neat.
Blankets and cardigans as not very warm today. Then off to church - cats followed us halfway but stopped before the road, thankfully.
Five minute walk to church made longer as A in her powerchair decided to push M in her manual wheelchair.
Dropped A at Godzone (Sunday school), and then into church with M. A good day today, accesswise. Both doors open at the main entrance, so able to walk in straight away, just like everyone else, not wait on the ramp whilst greeters try to work out how to open the second door. I like it when they've thought about the fact we will be coming before we get there; it makes me feel as though we are a full part of the body of Christ, not an awkward addition.
Into church itself, and two men lined up to move seats to make space for M. Lovely. If she's going to choose to come to church rather than Godzone every week then we might need to think about giving her a permanent spot, but for now, this works well. Again, we feel welcome and included - unlike when I have to hover and somehow shift seats myself whilst blocking the aisle with M's chair.
Joined in our row by friends and then my mother too.
A good service. Lots of good songs - Never Let Go, How Great Thou Art, the Lord is Gracious and Compassionate, and a couple more I'd been singing on the way into church before knowing they'd be playing. Hurrah. M sang along to How Great Thou Art, but confined herself to listening and having seizures during the rest of the songs. Tim Davis (Vicar) preaching on Going on being filled with the Holy Spirit. Challenge - to do nothing without first waiting for God to come with us.
Communion made more interesting by the large new stage at the front of church; not much space for wheelchairs to squeeze past. But we managed, with help from friends and vicars and curates and staff, and it wasn't too much of a circus. And friends came up with a better plan for next time, so that's all good. Next challenge will be to make it possible for M to receive communion rather than just a blessing, as she seems to be indicating she might like to. Puréed bread and wine? Or just a small taster? Will have to ponder that, along with thinking about practicalities of Confirmation, if that's what she decides she wants. Am unconvinced of theological necessity, but as we attend an Anglican church, perhaps we should identify as Anglicans as well as Christians. Always Christians first.
Coffee after church with friends; A played outside with her friends, and M stayed with us.
Back home and a round of pad changes and catheters, a quick packet of crisps for A to keep the wolf from the door, a stretch for M, then both girls watched CBeebies on the iPad and I caught up on emails, Facebook, and a special needs forum.
A popped out to play with the cats, and we met our new neighbours-to-be - the flat opposite ours has been empty for three weeks, since the death of its former occupant. Now it looks as though a family who currently live upstairs around the corner will be moving 200 yards down the road and into a ground floor flat. Much more sensible as they have mobility difficulties. They tell me the council is going to transform their front garden into a parking space; very sensible and will definitely help with the parking problems in our cul-de-sac. Won't be for a couple of months though, so I shall believe it when I see it.
Back inside, another catheter for A and then finally Grandad (my father) poked his head around the door, having finished with the second service at church. Coats and blankets on, pudding collected, and we walk around to my parents' house for lunch.
A glass of sherry and some cheese straws, white wine with chicken casserole, carrots, broccoli and scalloped potatoes, and then salted caramel chocolate tart with crême fraîche and bananas. Very delicious.
M had roast beef, apple, carrot, banana, kiwi, caramel sauce, and bread puréed and pushed through her tube; a lick of the chicken casserole and half a teaspoon of the chocolate caramel pie. A good meal for her.
Coffee in the sitting room, and a silly game with clockwork Grannies on Zimmer Frames and Grandads with walking sticks. Snakes and ladders, and then triominos, and finally a pencil and paper for A. Grandad read papers and dozed; Grannie and I entertained the girls and digested dinner.
A diary check, a card written for the newest baby in the family (no name yet), and rough plans drawn up for a special table for A - she is having spinal surgery soon and will need a higher table afterwards.
Then wrapping up as waterproofily as possible, and a quick march home through the rain.
4.30pm and tea for A - sausage roll, cucumber and coleslaw. Girls watch more CBeebies - Postman Pat, Me Too, Chuggington.
I make M's blends - tea tonight and lunch tomorrow. Sausage rolls, marmite cauliflower, milk, orange juice, baked potato and prunes. Bit of a mixed meal but all food groups covered and should help her bowels along. Mixed up meds for next 24 hours, restocked drugs bag and school bag.
5.30pm. A into bath. Hair wash. Matt Redman "Sing Like Never Before" album on very loud. Gave Imi her tea, helped her cough.
6pm. Carer returns, lift M onto bench, hand over so carer can do shower and hair wash as I give A her evening meds (domperidone, oxybutinin, and lanzoprezole), and post her into bed. In dwelling catheter, next chapter of our bedtime book (Allen Ahlberg The Giant Baby), a God story (parable of the seeds), prayers, ventilator, snuggles, wheelchair on charge and goodnight. Phew!
Carer hoists M back into chair, dries and plaits mad hair, then hoists into bed, signing off at 7.15 having hooked up SATs monitor and CPAP, sorted music (Vinesong "Isn't He?") and sorted positioning pillows. We have help in the evenings three evenings a week; this is less useful than it was as both girls are now usually very tired by the time the carer comes (7pm on weekdays) and would rather be in bed already by that time.
Feed cats, separate fighting cats, do the washing up, avoid looking too hard at messy kitchen, debate doing another load of washing, but instead Febreeze the wheelchair covers (which have been washed so often since November that they are nearly falling apart already and have gone baggy) and stack the rest of the washing by the washing machine.
Grab some sewing I'm doing and continue to unpick last night's mistake. Mistake took two minutes to see in, and has so far taken two hours to unpick. Am only halfway there too. Debating point, but I will enjoy using finished item knowing I created it all by myself.
Girls all quiet; I gave M her evening medication (tizanidine, glycopyronium bromide, clobazam, Vigabatrin, sodium docusate, carbemazepine, epilim), kisses and prayers and a goodnight snuggle.
Did another two hours unpicking and now have just one inch left. Have had to stop as elbow and wrist cramping. Watched a BBC programme on hoarders and resolved to do something about piles of clutter in my bedroom. Probably won't, though. Debated grabbing more of the chocolate tart (Mum having kindly sent it home with us), but settled for a packet of crisps and a glass of wine instead. Not terribly healthy, but nicely portable, minimal effort required, and minimal mess made.
Now 9.20pm, I have done a final round - all breathing machines working correctly, all emergency medication within easy reach, cats asleep on armchairs, girls asleep in bed, washing still drying on the racks.
A quick diary check reveals a quiet week ahead; no hospital appointments, no school appointments, just meeting a friend for coffee and meeting more friends for lunch. Will wait to see what the week actually brings. It is rare for M to remain well all week; she usually needs a day off somewhere to rest from the demands of school.
Clothes more or less sorted for the morning (identified anyway), it is now 21.50, I am in bed, and about to do my last nighttime bits and pieces (Internet, bible study which didn't get done this morning, set alarms) before settling down for the night.
*M has a loose tooth which catches on her lip. Dentist will pull it (not falling out as anticonvulsants have caused gums to grow too much) but wants to wait six months. I understand her concerns over unnecessary interventions, but why should my daughter be left in pain for that long?
Reflections on the day.
Today was a pretty average Sunday. Whilst I might have a glass of wine in the evening on a different day, I don't ordinarily drink with lunch except on a Sunday.
Today M only used three incontinence pads. This is good as we are only allowed four per day, so I now have one in hand for days when she is unwell and gets through more than her ration. But it is also bad, because it means she held her urine too long, and then flooded through, making more washing for me to do.
Today M did need painkillers, but did not need oral diazepam for muscle spasms or rectal diazepam for seizures. Her seizure activity was pretty minimal; a few episodes of bigger seizure activity rather than the hour long runs she had on Saturday and Friday.
M did not require suction, a nebuliser or supplemental oxygen today.
A only threw one item and hit no one. She did scream, cry, hit herself and throw some impressive tantrums, but managed to keep a bit of self control. She did complain of back ache, but refused painkillers.
I lifted A (25kg) 11 times, hoisted her 1ce, and carer hoisted her twice.
I lifted M (30kg) 6 times, and our carer hoisted her twice.
Unfortunately, M's sling was wet, and she cannot sit on her spare sling all day. So I could have avoided three of her lifts, but the others were unavoidable. I could have hoisted A this morning, skipping one lift, and twice more this evening. Her other lifts were at my parents' house though, where hoisting is not a possibility.
My back aches!
Tia.
“I donate my 12th May diary to the Mass Observation Archive. I consent to it being made publicly available as part of the Archive and assign my copyright in the diary to the Mass Observation Archive Trustees so that it can be reproduced in full or in part on websites, in publications and in broadcasts as approved by the Trustees
Saturday, 11 May 2013
A bitty kind of day
A lovely peaceful quiet couple of hours this morning, both girls managing a lie in until eight o'clock. Coffee and calm cats and a hibernating house.
And then a dead bird (no photo. Be thankful). And then a live bird with broken legs. Shut Benjamin into the shower room, took noisy struggling bird outside, dropped him into a quiet corner of the hedge - into Grolly's jaws. Oops. Scooped up Grolly, shut her into the house; she leapt through my legs, grabbed the bird and disappeared into unreachable shrubbery. Released Benjamin on the theory two cats might despatch bird faster than one. Sigh.
Girls waking, I managed to send Mog's breakfast (weetabix and vegetable juice) all over her new rug and up the wall. A blood bath echoing the one taking place outside. Oops. Later, I will repeat this feat with her lunch (spaghetti bolognese), before deciding to switch to a better syringe.
A friend for coffee. Very nice, if you can ignore the screams and shouts and general tantrumage coming from tLP over everything and nothing at all. Sigh.
Fish and chips and mushy peas for munch. Sometimes it's just the only thing to do. And very nice too.
Then this afternoon a bit of a bake. Salted caramel chocolate tart, having been seduced by a friend's description earlier this week.
Chocolate pastry. Yum.
Salted caramel. A little underdone, but still very yum.
Chocolate goo. Always yum.
More chocolate pastry left, so mix up another batch of caramel to try again. Turn around to see tLP has moved on from rolling out the pastry, to painting the pastry with liquid soap. Bin pastry, shout at tLP, pour slightly burnt caramel over slightly ancient bananas and eat with a spoon. Reasonably yum.
Get into pointless debate over drinking water, eating coleslaw, and not reversing into people's feet.
Bedtime for girls, then more sewing on what started out as a quick fix and has become a ridiculously complex project. That blogger who said she finished hers whilst her baby was napping was either exaggerating, or her baby was in a prolonged coma. Or, possibly, she's a faster and more efficient sewer than I.
Do five minutes sewing. Find error. Spend 90 minutes unpicking and give up for the night realising only one inch of twelve has been undone.
Go to bed. Rejoice in the knowledge that tomorrow is a whole nother day, and His mercies are new every morning.
Tia
And then a dead bird (no photo. Be thankful). And then a live bird with broken legs. Shut Benjamin into the shower room, took noisy struggling bird outside, dropped him into a quiet corner of the hedge - into Grolly's jaws. Oops. Scooped up Grolly, shut her into the house; she leapt through my legs, grabbed the bird and disappeared into unreachable shrubbery. Released Benjamin on the theory two cats might despatch bird faster than one. Sigh.
Girls waking, I managed to send Mog's breakfast (weetabix and vegetable juice) all over her new rug and up the wall. A blood bath echoing the one taking place outside. Oops. Later, I will repeat this feat with her lunch (spaghetti bolognese), before deciding to switch to a better syringe.
A friend for coffee. Very nice, if you can ignore the screams and shouts and general tantrumage coming from tLP over everything and nothing at all. Sigh.
Fish and chips and mushy peas for munch. Sometimes it's just the only thing to do. And very nice too.
Then this afternoon a bit of a bake. Salted caramel chocolate tart, having been seduced by a friend's description earlier this week.
Chocolate pastry. Yum.
Salted caramel. A little underdone, but still very yum.
Chocolate goo. Always yum.
More chocolate pastry left, so mix up another batch of caramel to try again. Turn around to see tLP has moved on from rolling out the pastry, to painting the pastry with liquid soap. Bin pastry, shout at tLP, pour slightly burnt caramel over slightly ancient bananas and eat with a spoon. Reasonably yum.
Get into pointless debate over drinking water, eating coleslaw, and not reversing into people's feet.
Bedtime for girls, then more sewing on what started out as a quick fix and has become a ridiculously complex project. That blogger who said she finished hers whilst her baby was napping was either exaggerating, or her baby was in a prolonged coma. Or, possibly, she's a faster and more efficient sewer than I.
Do five minutes sewing. Find error. Spend 90 minutes unpicking and give up for the night realising only one inch of twelve has been undone.
Go to bed. Rejoice in the knowledge that tomorrow is a whole nother day, and His mercies are new every morning.
Tia
Monday, 6 May 2013
Sunday, 5 May 2013
Golden Days
Some days, life is just plain good.
A couple of not so great nights, but both girls woke up full of sweetness and light this morning. No battles over hair or choice of television programmes, no struggles with food, minimal choking, and a balmy day to walk to church.
TLP all revved up for Godzone, and Miss Mog being very clear about wanting to come into church instead. Normally, Mog snoozes through morning church. But not this morning. "Let's use our voices to shout praise to The Lord", and Mog was off, singing and cooing and generally making her presence felt.
Silence, apart from the odd choke, for the sermon. But an intent silence, and very clear silent YES responses which for another child, in a less orderly Anglican church might easily have converted themselves into "Amen, Sister!" in response to Ros' sermon.
YES God gives blessings, YES, blessings are good, YES, Jesus is great and YES Jesus loves us. YES, heaven is here and YES heaven is our future home and YES a new creation. YES the disciples were empowered and YES the Ascension changed the world and YES God is good. And on and on and on, pausing just to splutter and drown a little at times, partly I am sure due to the amount of movement and concentration required to produce so many clear and consistent YESes (Mog can't talk, but opens her mouth wide and sticks her tongue out to say YES).
Silence for the prayers and YES she wanted to go forwards for a blessing herself at the end. Our church is not built for wheelchair users to go against the flow of traffic, but we managed. And YES she wanted a blessing and YES she welcomed the Holy Spirit.
YES she wanted to tell Ros how much she'd enjoyed the sermon and YES she'll take another blessing, thank you very much.
And then home, and get ready to visit friends. And YES please to having her nails made beautiful, and YES please to lots of food, and YES YES to seeing the new chickens.
Meanwhile tLP put her princess dress on, hearing that another princess was at the house of our friends. Sadly no princess appeared, but she and her friend enjoyed a rousing light saber battle or two, as she demonstrated her a) total unawareness of any thing Star Wars related b) willingness to join in anyway, and c) total lack of fear of dogs. Which is a huge change from the weekly clingy little thing she used to be.
A golden afternoon; good food - first barbecue of the season for us if not for them - good friends, and jolly good fun. Just being able to be outside, sitting down, in short sleeves. I think we'd all got to the point of doubting that would ever happen again.
A shortish seizure interrupting events briefly, but treating it with diazepam actually meant we could stay longer rather than needing to race home for regular evening meds. Blessing in disguise maybe?
Giggly Mog, chatty happy tLP, all children entertained and the chance to catch up with friends. A bank holiday weekend without rain. And now home, and a very late night, but two three happy contented sleepy sleepy people.
Night all, God bless.
Tia.
A couple of not so great nights, but both girls woke up full of sweetness and light this morning. No battles over hair or choice of television programmes, no struggles with food, minimal choking, and a balmy day to walk to church.
TLP all revved up for Godzone, and Miss Mog being very clear about wanting to come into church instead. Normally, Mog snoozes through morning church. But not this morning. "Let's use our voices to shout praise to The Lord", and Mog was off, singing and cooing and generally making her presence felt.
Silence, apart from the odd choke, for the sermon. But an intent silence, and very clear silent YES responses which for another child, in a less orderly Anglican church might easily have converted themselves into "Amen, Sister!" in response to Ros' sermon.
YES God gives blessings, YES, blessings are good, YES, Jesus is great and YES Jesus loves us. YES, heaven is here and YES heaven is our future home and YES a new creation. YES the disciples were empowered and YES the Ascension changed the world and YES God is good. And on and on and on, pausing just to splutter and drown a little at times, partly I am sure due to the amount of movement and concentration required to produce so many clear and consistent YESes (Mog can't talk, but opens her mouth wide and sticks her tongue out to say YES).
Silence for the prayers and YES she wanted to go forwards for a blessing herself at the end. Our church is not built for wheelchair users to go against the flow of traffic, but we managed. And YES she wanted a blessing and YES she welcomed the Holy Spirit.
YES she wanted to tell Ros how much she'd enjoyed the sermon and YES she'll take another blessing, thank you very much.
And then home, and get ready to visit friends. And YES please to having her nails made beautiful, and YES please to lots of food, and YES YES to seeing the new chickens.
Meanwhile tLP put her princess dress on, hearing that another princess was at the house of our friends. Sadly no princess appeared, but she and her friend enjoyed a rousing light saber battle or two, as she demonstrated her a) total unawareness of any thing Star Wars related b) willingness to join in anyway, and c) total lack of fear of dogs. Which is a huge change from the weekly clingy little thing she used to be.
A golden afternoon; good food - first barbecue of the season for us if not for them - good friends, and jolly good fun. Just being able to be outside, sitting down, in short sleeves. I think we'd all got to the point of doubting that would ever happen again.
A shortish seizure interrupting events briefly, but treating it with diazepam actually meant we could stay longer rather than needing to race home for regular evening meds. Blessing in disguise maybe?
Giggly Mog, chatty happy tLP, all children entertained and the chance to catch up with friends. A bank holiday weekend without rain. And now home, and a very late night, but
Night all, God bless.
Tia.
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