Monthly Archives: January 2014

Versatile Blogger Award: 7 Things you Won’t Know about Me

 

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A while ago (OK, quite a while ago), the lovely Mummytries nominated me for a Versatile Blogger award. You can read her post here. The idea is that you offer up 7 random facts about yourself and then pass on the brief to some of your other favourite bloggers.

It’s taken a while to sift through the randomness of my life to pick out a few things you won’t know about me or that eat away at my anonymity, but here they are. Random, huh?

1. I have been in the same profession now for about 11 years, but before that I had a range of jobs, including working in a petrol station, working for a car finance company and working as a bank cashier in a very badly fitting, hot-flush inducing uniform. The glamour of it!

2. I love a good fictional murder, in books, films, or on TV. I have quite a particular soft spot for Agatha Christie, Dorothy L. Sayers and virtually any of the nordic noir writers.

3. I can play several musical instruments quite badly: the violin, organ, different recorders, the flute and guitar.

4. I have been driven round racing tracks and rally courses by world-class drivers and never want to do this again because it is frankly terrifying.

5. I have read the novels of Jane Austen more times than is normal.

6. Since Boo’s birth I have been mistaken for a medical doctor four times and twice for a paediatric neurologist.

7. I once met David Tenant at the BAFTAs, just before he took over as Dr Who. We drank champagne and talked about Cassanova for a while. If I hadn’t actually been there I’d think I was making this up too. The glamour of it!

OK, so now to pass this on. I can nominate up to 13 people, I think, but that seems a bit much, so I’m opting for just 3: Abstract Lucas, Ethan’s Escapades, Beadzoid

 

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Sealed with a Kiss!

We had to cancel our first SALT (or speech and language) appointment this year because of Boo being ill. He also missed a joint OT/physio appointment. I minded about missing the joint appointment lots, partly because we have been waiting so many months for it. I missed SALT, well … not so much. You’ll know if you read the blog regularly that I find speech and language sessions depressing. I worry Boo has been written off a bit in the speech stakes, despite being young (still not quite 19 months corrected) and making lots of noise/sounds odd words.

Most of Boo’s appointments begin with the dreaded question: ‘So what’s new with Boo?’ Usually I scramble to find a more optimistic sounding way of saying, ‘Um, not much, but I think he’s doing what he could do before a bit better’. But I actually did have something to report for SALT. A small thing, but a big deal. And something pretty special to me. As I couldn’t tell his therapist, I’ll tell you guys instead. Honestly, I think you might even appreciate it more, too.

Drum roll, please: Boo can blow kisses!

Lip closure is something we’ve been working on for some time. And it’s been an odd one for me. You see, I hadn’t really thought it was a big issue for Boo before he started conductive education back in September. You see Boo can close his mouth. He has never had an issue with feeding/eating (for which we are all enormously grateful) and munches away with his mouth closed. But he does dribble a bit when he drinks out of anything other than a bottle and when he’s excited, which is most of the time, he has a big, wide smiley grin on his face. He couldn’t/wouldn’t close his mouth on demand to copy others. In the warm-up at his conductive education sessions Boo and his pals are asked to do some breathing exercises and make ‘ah’ (big, wide smiley face) and then ‘mmmmm’ (lips closed) faces and sounds. Boo just giggles. It is funny. But was he laughing because he saw how daft everyone looks and sounds or because he couldn’t do anything else, I wondered? Probably, I sadly realised after several sessions where he was asked to pop bubbles with closed lips (of course he just tried to eat them), the latter.

Our speech and language therapist also wanted us to work on lip closure which is so vital for feeding and speech. We were advised to start trying to get him to drink through a special cup with a straw and have started to have some small success with this, in that he’ll take a few slurps before biting the straw and triumphantly pulling it up out of the cup with his teeth. But that’s it. So what can we do but persist, like we always do? I started introducing bubbles at bath time and trying to get him to pop them with closed lips, like at conductive education. The result: plenty of giggles, but no lip closure on demand.

Until very recently, that is.

All of a sudden, Boo has started to blow kisses when we blow them to him. It is frankly the most adorable thing I have ever seen and he is mightily chuffed with himself. And in the last couple of days we get them without demonstrating. If you ask Boo for a kiss without demonstrating what you mean he obliges by blowing one right back at you.

When Sissyboo started doing this, I thought it was cute too, of course. But I had no appreciation of the skills that go into making something apparently so simple happen. Boo has had to learn to copy others, to work against involuntary tone and muscle movement to close and open his mouth when he sees fit. And then he has had to learn that the word for that lip movement is ‘kiss’ and if Mummy, Daddy or Sissyboo ask for one and he makes the right mouth shape we’ll clap and grin like buffoons even more than usual.

And this is just the start, potentially. This might be the route to less messy drinking and to new sounds. Maybe one day I won’t just get a kiss, maybe one day I’ll hear the word ‘Mummy’ or ‘I love you’. I won’t take them for granted. That’s for sure.

I love you too, Boo.

Because I am especially happy about this, I am linking this post up to two of my favourite linkys: Magic Moments and Motivational Monday in part as a thank you to two ladies whose blogs help keep me going when things don’t feel quite so magic or motivational.

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Good News Friday #40

Like most of you, it’s been back to reality for us this week. A return to school, to work, to nursery. Oh, and because we’re the Boos, appointments, illnesses, out of hours doctors and all that jazz. Monday was supposed to be the most depressing day of the year (and to be frank, if you read my post on Monday, you’ll know that ours wasn’t great), but the week has got better and better as it’s gone on and I am quietly optimistic about what lies ahead. 

So here goes. Our good news…

Boo got better! Thanks to The Grumposaur’s Dad arriving with an unexpected gift on Christmas Day (a stinking cold and chest infection), Boo spent from January 1 until Monday pretty sick. His fever came and went for the first few days, but by the early hours of Sunday was up to 40 almost constantly. His breathing was shallow and rapid. I was worried to put it midlly. We had quite a saga trying to see an our of hours doctor, but eventually got antibiotics and he’s doing so much better now.

I’ve written about this before, but when any child gets sick (especially when they can’t communicate what’s wrong with them), it’s awful. Sissyboo’s major illnesses always knocked me for six. But with Boo, or with any premmie, or any child with complex health needs, it can be devastating. You end up trying to fight not just the big that they have, but have to wrestle physiologically and emotionally with the underlying problems that make them so vulnerable to things that would make you and I feel a bit out of sorts for a few days. You confront you fears of the past the present and the future. And it’s blooming exhausting. Thank goodness we made it without hospitalization this time.

We got some sleep. OK, this is a story of two halves, or 5/7ths and 2/7ths to be precise, but still, glass 2/7ths full and all that. Boo’s sleep problems have been awful for months (most of the time since birth, actually). Worse still, they have deteriorated rapidly since November. Settling him is a battle that can take hours only for him to wake 50 minutes later. He has started to bite, pinch and pull our and his hair before sleep too, behaviours we never see at other times. If he naps on us in the day, or on his tummy and a sleep mat at nursery, he sleeps well. I’ve been trying to work out what the problem is. I’ve (almost) set aside the partly irrational fear that his epilepsy is returning and come to the conclusion that there are some sensory issues at play here (about needing sensory feedback to comfort himself) but also that he needs pressure and a good deal of support to fall asleep. Sadly, I can’t let him sleep on his tummy at night. They can do this at nursery because he is constantly watched, of course. He can head turn, and can roll front to back but not reliably enough for me to think that if he got into trouble, he could get out of it.

The effects on us all have been, frankly devastating. The exhaustion is awful. The frayed tempers worse. And this week, it was clear that it was starting to affect Sissyboo, too. And there I draw the line. I wrote to her teacher to explain that she might be tired at school but vowed that I was trying to get help. I am trying. Hard.

So I want to say a big thanks to all those tweeps and especially the many lovely people who commented on or messaged me through the blog’s Facebook page with advice, anecdotes, tips and solidarity. Thanks also to a lovely friend I happened to meet for an all-too-brief coffee for the common sense she imparted. We have introduced some new things. I have set up an elaborate home-made sleep system involved supports under his sheet to bolster that given by his v-pillow. I have bought a white-noise machine, which we clearly need to leave on all night. I have contacted Cerebra, who run a sleep service that has clearly helped so many and I am about to receive some info from them that will allow them to assign us a sleep practitioner. And, of course, I will speak to Boo’s consultant about this when I see her in 10 days. 

But touch wood (and with crossed fingers in case I jinx this) the last two nights have been better. Much better. And the effects all round (on Boo on us) are terrific. This is going to be a long battle for us, I suspect, and like many of the ones we fight, the goalposts will probably change a lot, but I feel positive that we are doing things about it and that doing things is making a difference. 

Exercise. I have entered a half marathon in September. This will be my second in only my second year of running. Well, I say second year… I haven’t run regularly for many months and regular running really stopped last March after I got an injury. I had intended to start building back up to regular running this week, but things have been too hectic with Boo’s illness and a scrambling to catch up at work with time lost to his illness that it hasn’t happened. But I have done some school/nursery drop-offs on foot (a round trip of 1.5 miles) and even doing something so small-scale has helped me to clear my head and make me feel a bit better about life. I have written run in my diary for today and Sunday. It might just happen, fingers crossed…

Conductive Education. Sadly, I had to work this week on the day I normally take Boo to conductive ed, but The Grumposaur took him. I want to write more on the blog next week about what Boo’s being doing in conductive ed lately and how it’s helping him, but for now, I thought you might like to see some of the fruits of his labour in the form of this little snowman masterpiece.

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One of the things I love about conductive education is that it doesn’t base activities around what it thinks children with cerebral palsy can do (knowing that many mainstream activities can extremely challenging for many of them). Instead, it asks how we can enable children to access all the activities that we would expect kids their age to do.

And that’s what I want for Boo. A life where we provide him with strategies (however unconventional) so that nothing he wants to engage in is in off-limits. Surely that’s the kind of life we all should lead…

Anyway, that’s my edited highlights of the week. I’d love to hear your good news in the comments section or on the Facebook page. I love to hear from you!

 

Resolutions and Other Myths

As I get older or maybe because life has gotten more complex since having Boo, I feel much more self-reflective at new year than I used to. I spend a lot of time in early January thinking about the year past: what we’ve achieved; how far we have come; how far we have to go. And I think a lot about what’s to come. My dreams for us all.

I guess that’s the point, isn’t it? And it’s why people make new year’s resolutions, right? I spent years making them myself, sometimes even writing them down. They almost always involved losing weight, better work-life balance and other predictable things. And predictably, I’m not sure I ever achieved my goals. It’s not that I lack will power. If I really want to do something, I do. But somehow I can’t make my resolutions stick.
This year I thought about making some goals for me and the Boos for the year ahead. Like getting Boo to sit; like spending more quality time with Sissyboo; oh, and losing weight and achieving a better work-life balance. All good resolutions. I started looking at productivity apps to download. I even dug out a notebook to write my resolutions down. To hold myself to account.
But when it came to it, I just couldn’t put pen to paper. Why? Was I losing my willpower? Was I suffering from new year blues? Who knew? I put the notebook down and thought to myself I’d start making the list today. Monday 6 January. Sissyboo’s first day back at school. A day of three appointments for Boo. My first day back at work. The day I would start running again. A new start.
And yet, as I type this, I am sat on the sofa with a sleepy Boo after an emergency trip to the out-of-hours doctor yesterday when a four day fever went up to 40 degrees. Boo has a respiratory infection. He is quite unwell, but thanks to the wonders of antibiotics, he’s improving.
And so Sissyboo is at school, but everything else is all to cock. I have checked emails but will be pulling another late night to catch up with missed work. I sure as heck won’t get to run.
And that’s why my new year’s resolution this year is not to make any resolutions except to be resolved enough to get through all this. On a day when many people are getting back to normal after Christmas, we aren’t. Or rather, we are. It’s just that our normal isn’t like other people’s. Our normal involves packing our emergency hospital bags just in case when a fever develops, and locating important consultant reports to get docs yet to discover the complexities of Boo’s life up to speed quickly. Our normal regularly involves dropping everything. Being adaptable. Of taking it on the chin and making the best of things.
I want all of the things I could have officially have made my resolutions to happen this year. I really hope they will. But making them another stick to beat myself with when they aren’t all within my control isn’t going to help anyone. But getting on with and through things – being resolved – will. So that’s my focus for 2014.
I hope all of your new year’s resolutions are realised. But if they aren’t don’t beat yourself up. If life gets in the way, I won’t blame you. If you don’t blame me, that is.

Happy and Good News Year (Good News Friday #38-39)

imageThis is the longest I’ve gone without blogging since I started Premmeditations back in April. And to be honest, it’s felt odd. Not exactly like losing a limb, but like losing touch with a good friend through the accidents of life.

Time to reconnect. And what better way to do this by picking up where I left off? With Good News Friday. OK it’s not Friday but that’s how we roll in Boo Land. If there’s one thing I’ve learned since having Boo, it’s that time isn’t linear or necessarily moving in one direction, despite what the calendar and physics say.

So the good news since my last Good News Year post is this:

We made it!

If you follow the blog or read my sometimes anxious ramblings on Twitter, you’ll know that December was a cruel month. By Christmas I felt utterly broken. It’s hard to say exactly what did it. Months of juggling appointments, therapies and work played a part. Lack of sleep, still a major problem here, was surely another. Fear about new pressures at work from January were lurking in the back of my mind. But I think it was whatever this particular brand of PTSD, reactive depression or anxiety (take your pick) I have that was the indigestible icing on the unpalatable cake. I just couldn’t shake the irrational fear that Boo’s infantile spasms would mark their one-year anniversary by returning on Christmas Eve. I found it hard to believe Christmas wouldn’t involve repeated hospitalisations again and be spoiled completely. Last year started so badly and things didn’t improve for many months. I was frightened that I couldn’t cope if this happened again. I was running on empty.

So I did something I rarely do. I gave in to the holidays. I took nearly two weeks off with minimal work. And as the days went by I stopped crossing my fingers and holding my breath.

Because we made it. No seizures. No hospitalisations.

No Christmas in Boo Land is normal by most people’s standards. No life that involves daily physio, speech therapy, gaiters and standing frames could be that, but it was ours and we loved it. Most of all the kids loved it.

There has been a slight sting in the tail. Boo is unwell (has been for 5 days) with a virus and high fever and his already bad sleep is bordering on the appalling. But somehow, despite all of this, being together, having quality time together as a family with other family and friends, and (and I suspect this is probably more important than I’d like to admit) cutting myself some slack and letting myself of the hook has been restorative.

In December I was, frankly, a wreck. In January I feel fit to be back on the road again. Sure there are still bits of my life that are precariously held together by duct tape, but I’m hoping they won’t fall off any time soon.

I am apprehensive about the return to normality: the 6 (yes: 6!) appointments Boo has next week and the late nights catching up with missed hours at work. But normal also means getting back to Premmeditations. She’s a new friend, but a good ‘un and I’ve missed her and her lovely readers.

Happy New Year!