Tuesday, 29 March 2011

Happy Birthday, Little Princess

A small girl, slightly before seven this morning (thank you, BST, you came just in time!) "Mummy, Mummy, am I the Birthday Girl?"

A highly orchestrated morning, "No, Mummy, not hello, you need to say, hello my precious Birthday Girl because you are the Birthday Mummy." Weetabix inhaled in double quick time to open the present from Mog, carefully searched out princess dresses and assorted tiaras and hair bands admired and assembled, but the real winner, this last-minute addition, a set of scrubs courtesy of Sainsbury's sale.
One "Doctor kit" complete with mask and stethoscope, and after the minor diversion of a full school day, she was home, changed, and outside showing off to everyone and chasing her schoolmates' parents down the street to try to listen to their chests. It's possible we'll be working on personal boundaries this year.

Phone calls, parcels, cards, six candles in a pot of chocolate pudding and a box of maltesers from the bus driver, what more could any girl wish for?

One very tired little girl fast asleep by six o'clock but only after more instructions "Now you must say goodnight my beautiful Birthday Girl because this was my very special day."


Saturday, 26 March 2011


Picture this. I'll spare you the graphics.

A fairly ordinary kind of a day. A child who just happens to be doubly incontinent wakes up. She went to bed at 8PM, later than usual, and slept the night through without waking at 5AM, when she has her morning medication. So, by 9AM, the urine sitting in her incontinence pad was fairly ripe.

Her pad was changed, and she was hooked up to her tube feed, which runs for the next twelve hours, dripping a diluted, easily digested, formula into her stomach at a rate of 140mls/hour.

At 10AM, after much discomfort, she had a fairly large, fairly loose bowel movement. Her pad was changed, and she opted to go back to sleep for an hour or so. By 12PM her clean pad was flooded with urine, her pad was changed, and it was time to go out for lunch.

Once sitting up in her wheelchair, gravity and movicol did their stuff, and by 3PM her pad was distinctly overripe. The pad held it all in, but once unsealed, a wave of liquid faeces flowed over the child, necessitating a shower. A quick hose down, much mopping with a towel. Clean pad left in bedroom, and whilst this was fetched, a good wee ensured the towel also needed washing.

All cleaned and changed, back in wheelchair ready for an afternoon party. A good party, a good evening, home, and one flooded pad needing to be changed before bed at 7PM.

One child now sleeping peacefully, one feed pump nearly finished, a good end to the day. 5 pads used plus one sodden towel, which would have been a 6th pad if a certain parent carer had been more organised. An ordinary day, no antibiotics to produce extra bowel movements, no extra fluid intake, no pad accidentally ripped as it comes out of the bag, and no middle of the night or 5AM change.

Now take another child, who is differently incontinent. Imagine having a normal diet, but having no control over when your body evacuates stool. The medics do their best, providing various different devices and procedures to ensure a good evacuation once a day, and this is reliable 13 days out of 14. But then on the 14th day, imagine seeping and leaking at intervals throughout the day. This can be six times within the six hours of a school day, it can be six times within one hour.

Imagine, at the same time, having a bladder which never fully empties, but which dribbles constantly. Imagine taking medication to control this, on top of the medication to try to control the bowel problems, and imagine trying to deal with both these issues within a mainstream school environment. Imagine having to decide - or others having to decide, on your behalf, which surgeries may or may not improve things. And in the meantime, imagine that every two hours (or more often, on the days when the bowel is playing up), you have to stop whatever you're doing, whether that's sitting in a lesson or playing at a party, and submit to someone else inserting a catheter and emptying your bladder.

Remember, even with this happening every two hours, your bladder tends to leak. So you need to wear a pad inside your knickers, to catch the dribble and prevent embarrassment.

Now imagine that you're the parent. And imagine that you've had a phone call from the continence service. It has been decided that, from now on, no child will be issued with more than four pads per day. Never mind the fact that one child has been assessed as needing five pads, and the other six. Never mind the fact that the needs have not changed, from now on, a maximum of four pads per day will be issued.

Which of the first child's pad changes will you decide to skip? Do you leave the child in the ammoniacal overnight pad, because although it is distinctly whiffy, it isn't actually fully soaked? Do you leave the child in the soiled pad, because the child has not had that morning wee yet?

How about the second child? Do you tell them that from now on, they can no longer use a smaller pad inside their knickers, and instead must go back into nappies, because these will hold more dribble, so will not leak through if left unchanged between caths, despite being damp? What does that do for self-esteem?

Ladies, imagine not being able to change a sanitary towel because each one should last six hours. Or perhaps imagine not being able to throw away a tissue, because although you have blown your nose on it, there's a corner which is still free from snot and which you should use next time.

Oh, and then, whilst you're still trying to work out how it is OK to decide not to meet an assessed need any more, imagine that the new system will mean these pads will be delivered. Good news, perhaps; it's certainly a pain having to go to the health centre every month to collect them. Well yes, that would be good news. Except that under the new system, you'll be expected to make a phone call every twelve weeks to reorder the pads which will not be enough to last those twelve weeks. And then, oh and then, you'll have to find storage space for three months' worth of incontinence pads. Two children - that means the equivalent of six months' worth of incontinence pads - adult-sized nappies. 14 pads to a bag, 4 per day = 28 per week = 24 bags per child every delivery. 48 bags of pads. Plus the extra bags we'll now have to buy privately. And the extra extra bags we will have to buy to cover the times I miss the cut off date to reorder, because life tends to get in the way of remembering to make a phone call every twelve weeks.
Now imagine someone has phoned to tell you all this at exactly the same time as the school bus has delivered two girls to the doorstep. And imagine being told "I don't like your tone, you're very hostile." when you ask who made this decision and how exactly they expect you to a) manage without the pads they know you need and b) where you're supposed to store them.

Imagine all that, and imagine that several days later you're still waiting for the post to deliver the promised full details of when this is going to happen, who decided it was going to happen (since apparently the continence service have had nothing to do with this decision), and the information on who to complain to and how. Imagine that, and imagine scrubbing the faeces from your fingernails after cleaning a commode this evening. And then you'll be pretty much where I am at the moment.


Friday, 25 March 2011

Thoughts from the day.

"Mummy, Mummy" calls at 2.30, 3.15, 4.14 and 5.45 do not a coherent thinker make. And giggles at the same time coming from the non-verbal one do not make for a lighter atmosphere. The discovery that kicking the foot with the sats probe on it can make the machine alarm is not a funny joke either.

Mog is fine, sorry for lack of updates. She's just finished a full five days of school, hurrah.

Krispy Kreme make a coffee filled doughnut. I did not need to know this.

I think I'm thankful that Little Princess waited until she got home from the party before throwing up the vast quantities of party food she'd clearly scarfed down at the party itself.

I know I'm thankful she missed the Princess dress. And I'm reasonably certain I'm grateful to her for grabbing a bathtowel.

I'm definitely sure I'll appreciate the moment when she can reach the basin or aim for a jug or hey, better yet, work out that moderation is a good thing. But I'm also pretty sure I'm thankful for the fact she can enjoy party food and parties.

We have builders. I'm discovering that there are in fact builders out there who turn up when they say they will, and do the work they say they will do. This pleases me. They've also managed to move a wall without damaging the flooring in the shrinking room, so I won't have to replace it. This pleases my bank account. Unfortunately it will no longer be possible to fit new settee plus bubble tube along shortened wall; I wonder whether I can shoehorn the bubble tube into Mog's bedroom.

Photos would follow but I have no internet access. This does not please me. And the explanation "ah you see, it's because you have a very low signal to noise ratio. This means there's very little signal and lots of noise on the line." does not do very much for me either. Nor does the information engineers may have it fixed by the 30th.

My ear hurts. It has hurt on and off ever since I went to the dentist a year or so ago. But it's ached solidly for the last week and I can't chew properly. I do not want to go back to the dentist.

LP has a Birthday coming up. Next weekend I shall briefly be responsible for two dozen small children. This is possibly scarier than the thought of going back to the dentist.


Tuesday, 22 March 2011

She's a Little Princess

Little Fish moved into her own bedroom when she was two and a quarter. It had been a very fabulous and elegant teenager's room, so we gave it a rather glorious makeover. Little Fish wanted fish, and she got them. A large wooden octopus with hooks on the tentacles to hang things. A mermaid, assorted whales and fish and sea horses across the walls, which were painted different shades of under the sea blue. Very lovely. The curtains somehow got left. Thick, warm, and blocking out the light, they didn't go (being a dirty orange colour), but they were useful.

A few weeks ago, we finally got around to choosing some new curtains. We hunted for something beautiful in a bluey-green sea theme, but everything was either pirates or sailing boats. Not what she had in mind. Finally, she fell in love with her ideal curtain fabric. Hugging the roll, she refused to look at anything else, considered a couple of alternatives Grannie and I held out to her, rejected the bribery of matching new duvet cover if she chose something else, and hung on fast for her choice.

Pink and purple squares with silver crowns and hearts.

We got home, and Little Fish pulled me towards her. "Mumma, I not want to be a Little Fish any more. I am a Little Princess now, please?"

So, the curtains are made and will be hung as soon as the walls are painted. The walls will be painted as soon as I can remove the octopus and sand down the mermaid residue (they're sticky beasts). We're going from under the sea to Fairy Dust. I guess it had to happen sooner or later.

In the meantime, Little Princess (Little Fish no more) has a Princess pampering party to go to. She's invited to dress up as a princess, and as far as I can make out, the party will be a spa/makeover experience for six year olds. I'm glad I don't have to stay and help!

LP not having been big into girlie outfits, princess dresses have not formed a large part of her wardrobe. Thankfully, we have friends with older girls. And so, last week, Little Princess had two bags of all things princessly to try out and decide on.

I think she had fun.

But all that princess glamour was a little too much to cope with.It's tiring work, being a princess.

Tuesday, 15 March 2011

Too much of a good thing?

We had a lovely few days at Helen House last week. Both girls on top form. A playmate for Little Fish on hand to keep her busy, and staff really getting to know Mog's communication. Great. Some school, some music therapy, some physic, a visit from friends and from our own OT. And a giant parcel from Disney to unwrap and explore, the icing on the cake.

We all had a really lovely, properly relaxing time, and I even managed to finish the jumper I was knitting just before kicking out time. Perfect.

Mog had a bit of a cold, nothing major but plenty of snuffles. Chest checked and all clear, so with no further excuses for delay we headed back to home and reality again. Has to be done occasionally.

Home for just one hour and Mog decided to celebrate by throwing a temperature and dropping her SATs. Paracetamol and suction, and problem solved. Ish. Decent morning yesterday but wobbly enough to miss school. An interesting afternoon, debated ambulance at one point but settled for GP - and of course Mog was flattered by all the attention, but absolutely find at the surgery. Antibiotics prescribed anyway, mainly to humour me, but chest still fine.

A somewhat dodgy night, SATs on the low side considering she was on CPAP. But up in the morning and snotty and achey, but otherwise ok.

Into her wheelchair and off to the Orthopaedic hospital for a wheelchair fix. Nice new footplates, an elasticated wrist strap for going through doorways without leaving knuckly flesh on the frames, and all fine.

We walk out of the wheelchair clinic and she decides to start dropping her sats again. So we go and have a cup of coffee (I drink, she sniffs) whilst she sorts herself out. 20 minutes without desatting and I'll be happy to drive her 20 minutes home.

She does not manage this. We head for the children's department and beg for someone who might listen to a chest or offer advice. We find an Anne, who escorts us through to the otherwise deserted children's ward, where we borrow some oxygen. A brings tea. We like this. She keeps us company and listens to my whitterings until a physic arrives, listens, and hmmms. Soon we are joined by a dr, who also listens and hmmms and joins in the debate.

I explain why we don't want to go to hospital, whilst realising the NOC is not the ideal environment either. Dr calls Helen House, who have friendly doctor, an empty bed and a spare nurse.

We fiddle around until Mog is as stable as she's going to get, then load up for the drive. It's five minutes. Mog manages to set her alarms off at least once in those five minutes.

Mog is deeply pleased to be back at HH and greets everyone with a big smile (and an antibiotic induced hazardous waste cloud), before submitting to being examined. The hmmms turn into a nice right sided lower lobe infection, her speciality.

I abandon her in favour of sitting in rush hour traffic for the next hour and a bit. Rush in, thank Grannie, put Little Fish in bed, pack a suitcase and rush back out again with meds and other essentials.

Back to HH where a very tired Mog is pleased to go to bed. I blame the staff from last week myself; she clearly had too much fun and worked out how to get back again! LF is most envious and split between worry over her sister and "'ow is she gettin' on?" and "Ohhhh! It's not fair, I want to go back too. Ehuh, ehuh, I am sick too now." Nice try...


Thursday, 10 March 2011

For Kitty

We saw this and we wondered if it might be your friend. It was the fourth E that did it for us.

Wednesday, 9 March 2011

Left to Right

Little Fish, Mog, me. There's something wrong when the suitcase for a four day stay is bigger than the child using it.

There's something even wronger when the packing, despite taking four hours, turns out to be incomplete, necessitating a trip home for missing circuitry.

Still, four hours after arrival, we are mostly clerked in and ready for some serious relaxation. Bring it on!


Sunday, 6 March 2011


Our Preacher this morning spoke on John 11, vv 1-44. Very cool passage. Lots of stuff. Doubting Thomas, ready to die with his Lord. Lazarus dying. Martha, trusting. Mary, rebuking. Jesus weeping. God working, Lazarus living. All good stuff.

Drawing on his own experience, he told us about a time in his own life when he had been deeply depressed, and how a vision he had had of Jesus weeping with him had been the start of things turning around for him. I'll go along with that. I don't know why there's so much suffering in this world, but I know absolutely that I'm never alone; that for every tear I might shed, Jesus is right there beside me, and He knows all about it and feels it all far more deeply than I do.

There is huge sorrow in this world. And my God is bigger than all that sorrow. But that doesn't dispel the sorrow, it just means I'm not grieving alone. And there is huge joy in Christ - but that doesn't take away the sorrow either. Jesus wept. Jesus weeps. Wholly human, and wholly Divine, He shares in both our sorrow and our laughter. Which is, on the whole, pretty awesomely amazing and excellent.

But our preacher also suggested that this current "epidemic of depression" is because this generation of depressed younger women do not know Jesus. And I have to take issue with that.

I know Jesus, I walk with Jesus and trust in Him and believe in Him and love Him as Lord and Author of my Life. And yet, I've been deeply, profoundly, depressed at times. I've been depressed and on anti-depressants, I've had counselling (both Christian and secular), I've seen psychiatrists and I've spoken to concerned and loving friends. And I am disappointed that a man, who has himself suffered from depression, should suggest to the congregation - and therefore to those within the congregation currently struggling with depression - that depression is due to lack of knowledge, or lack of faith in Jesus.

I'm fairly certain this preacher would not suggest the same thing about cancer, about 'flu, about physical or learning disabilities. So why make that assumption about mental illness? I know that Jesus heals - but even 2000 years ago, He didn't heal everyone. When He went to the pool at Bethsaida, He spoke to just one of the men lying around the pool. I'm sure He could have waved a hand and healed the lot, or spoken to the waters and commanded them to heal all who drank from them. But instead He picked out just one man. Was that man better than all the rest? Did he happen to have the one form of disability which was fixable, as opposed to all he others? Were the others worse sinners than he? Was he simply the nearest to Jesus as he walked by? Or the loudest? Or, after 38 years of lying by the waters, the most disabled? I've no idea. But I'm pretty certain God loved the un-healed ones just as much as the healed. And I'm pretty certain He was just as fond of the dead He didn't choose to raise as he was of Lazarus.

Depression is an illness. It can be disabling. It's overwhelming. The Lord is my refuge and my strength, and He walked with me through the valleys of the shadow of death. But the Prozac restored the chemical balance in my brain; the pills helped to overcome the depression, just as my daughter's antibiotics clear infections from her lungs, and her anti-epileptic drugs subdue her seizures. Yes, God could have done it in a sudden miraculous supernatural healing. But He chose not to - and he walked me through it instead. Just as He chooses to walk with my daughters through their own illnesses, both acute and chronic. It is not my girls' lack of faith (nor their birth parents') which caused their disabilities. And it was not my lack of faith which caused my depression.

Jesus saves. Jesus heals. Jesus brings hope and light and life, and it is my prayer that everyone might one day come to know Him. And the young woman with depression may find Jesus as much of a comfort and a companion as the older woman with cancer. But it would be irresponsible to suggest that cancer patient stop treatment and rely solely on prayer.

God made man, and gave Him the tools to treat illnesses - from the most basic first aid through to the most sophisticated and futuristic medical procedures. And of course prayer is important. If I'm going on holiday, I might pray for a safe journey. But I won't get anywhere at all if I don't get into the car and drive.

And this post has ended up at a rather different destination to the one I originally thought I was heading towards. So I'll leave it with a request please for prayer for a few friends I have who are themselves in hospital right now, and for a few different friends who have children in hospital, and who are having to make difficult decisions this coming week. For friends who are not in hospital but who possibly should be, for friends who are facing the reality of life without their treasured children, and for other friends who are starting different chapters in their lives just now. And if this is cryptic, I apologise. But God knows the details.



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