Monthly Archives: April 2014

Sitting Pretty

OK, so this post came with a teaser trailer. OK. A teaser spoiler. You see, I couldn’t sit on the news. I couldn’t help but tweet my joy and relief at the weekend. Like always I did it with a sense of nervousness.

Whenever Boo does something to suggest a milestone will be met or has been met, I worry that telling people will jinx it. It’s not that I’m a superstitious person. I’m not at all. It’s not that I’m a pessimist. I’m not. It’s just when you’ve played the two steps forward, one step back game for long enough you become a pragmatist. Too many things come and go with a growth spurt, or onset of illness, or the turning of calendar pages. But I think this one is sticking. And I am so, so happy.

So, here it is:

Boo sat for 5 minutes. Unaided. 5 minutes. 300 seconds. It felt like hours in my mind.

And it was the reflection of not just hours, but days, weeks, months and now years of hard work and grinning through tears of frustration. Hours of physio at home and nursery every day. Sitting him between by crossed legs, sitting him on my legs. Sitting him straddled on a physio roll and on a box. Sitting him on a Swiss ball and, when that burst, his sister’s space hopper. It’s the result of hours and hours of conductive education and the love and support of his teachers, who don’t see limits in our children, just potential. It’s also, undoubtedly the work of the Lycra suit he now has, which gives his brain enough sensory feedback to make his floppy trunk muscles realise that have a job to do and iron out the c-shape in his spine.

As I sat playing with Boo last Sunday he was on his lime green yoga mat (non-slippy and cushioning for bumps) as usual, I had an array of toys in front and to the side of him to choose to play with: his drums, his bubblegum machine, his V-tech bus. I was actually focused on his SALT therapy at the time. (Yeah, cerebral palsy has robbed me of the opportunity just to play with my son. There’s always an end in view.) So I was getting him to choose toys by eye-pointing and grabbing and making a ‘yeah’ or a ‘no’ (which he can’t yet say but is trying to). I was talking about colours and seeing if he recognised them.

I looked at my watch, to see how much time we had before his sister came back from her swimming lesson and when to put the jacket potatoes in the oven for their tea. 15:05. OK, plenty of time.

Bubble gumballs cascaded down the machine and I tipped it up so Boo could try (it’s very hard for him, but he is just about doing it now) to lift the balls up and put them back in. He was doing so well with this, we kept going. Then he wanted to play with the bus and I made him choose letters (from the ones he can say: ‘m’, ‘a’, ‘d’) and played the songs. I sang them and he joined in with odd sounds. It was fun. And then I got out the drum and realised one of the instruments off its side had fallen off. It was near me, but I had to move about half a metre away from Boo to get it. Without thinking, I did it.

He was still sitting. Diamond legged (to eliminate his hamstring tone), propping with one arm. Then he swapped to prop with the other. He was still sitting. I looked at my watch 3:10. I shrieked. He wobbled. I caught him.

He had been sitting for 5 minutes. Tears welled up. If it hadn’t taken me so much by surprise, if I wasn’t so nervous about not being near him to catch him when he falls, I’d have a picture to show you. Maybe soon.

There have been days (many days) where I worried this day would never come. People had told me not to expect that Boo would ever be able to sit independently. And no one can predict what this means in the long term.

But we’ll take this and shout out loudly and proudly about how well Boo’s done.

No limits, Boo. Sometimes, I think there is nothing you aren’t capable of.

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Good News Catch-up: Good News Fridays #50-53

Blimey it’s been a hectic few weeks. And there’s been plenty of good news, but to be honest, I haven’t had enough time or energy to wade through it and document it.

Instead, like I wrote last week, I’ve been making lots of to-do lists lately, because I am struggling to remember even the most obvious and straightforward of things. But these lists, while necessary, are also a bit overwhelming. A lovely reader of this blog suggested I get the Evernote app, which looks amazing. I need ios 7 on my phone first, though, and that means clearing a load of photos of the Boos off it. Why does getting one thing crossed of the list involve adding another 2? Aargghh.

But Good News Friday is different. It is the best kind of list and the one I need to write most: an aide memoir that reminds me that we’re not just bogged down in stuff. We have our battles – don’t we all – but we survive and thrive.

So here are some good news highlights of the past few weeks:

1) Sissyboo: I feel the lovely Sissyboo has been a bit neglected on the blog lately and I always worry that the complexity of her little brother’s needs, and the fact out Homestart support ceased at Christmas, means that she doesn’t always get as much Mummy time as she deserves and I would like. But I did manage to take some time time off over Easter and we had a couple of days out just her and I while her brother was at nursery.

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This makes me feel guilty. But if he’s there, he’s getting his one-to-one support for a few hours, which means he has physio, standing frame time and speech therapy and being the centre of someone’s attention. When I have both of the kids it’s always ‘hang on a minute, Sissyboo, I need to get Boo into his chair’ or ‘hang on Boo, Sissyboo has spilled yoghurt on the sofa’. He gets plenty of time with me on his own. She doesn’t any more and it makes me sad. And while we all like going out together, there are things we can’t do with Boo, or are very difficult with him. Like the trip to Scotney Castle we did a couple of weeks back, complete with a rough and tumble nature trail that Boo’s buggy couldn’t have coped with, a trip around the (non-accessible) house and a run around the steep gardens. I can’t explain the sense of exhilarating freedom tinged with sadness I felt playing hide and seek with Sissyboo in the quarry garden, with its gazillion steps, smelling the beautiful flowers, knowing we will never be able to do that with Boo… But we had a good day. And we followed it with an Easter egg hunt with both Boos the next day.

2) My back: My back is shot. The GP called it Carer’s Back, which meant he both took it seriously but also saw it as an inevitable consequence of my life and therefore an occupational hazard. It has been getting worse for 6 months and in the last 2-3 has become excruciating at times. But here’s the good news. I got a physio referral. Yep, now I get to have physio too and make an extra trip to the hospital we call our home from home (urggh) each week! But my physio is lovely. She is practical and sympathetic in just the right combination. When she asked me what worried me most about my back pain and saw the tears well up in my eyes when I said ‘I am worried I might not be strong enough to look after my son’, she looked me straight in the eye and said ‘We’ll fix you’. And she is doing just that.

It’s a slow process. It looks like my bottom three vertebrae have become compressed through lifting Boo and there is a lot of inflammation. I have been taking prescription co-codamol, which I really want to get off, but it has helped and made the pain manageable enough to do the exercises and stretches she has given me. I need to get fit. I need to strengthen my core. Boo is not getting any smaller and I am in this for the long haul. But the back pain stopped me running, I put on weight and so I got into a vicious circle. I’m breaking that circle now and, although the pain is still there and still pretty bad at times, I too believe I am going to be fixed and that’s a good feeling. I’ve even snuck in a couple of runs and although neither felt good, they didn’t feel terrible. So that half marathon is still in my sights…

3) The blog: I can’t believe it and am sure things will change next month, but this month, for this first time ever, I broke into the Tots100 500 for the first time (I usually hover just outside). I know that this is largely down to the publicity we got for our Invisible Woman blog campaign, which was a group effort, highlighting the challenges involved for working parents of disabled children. So if I fall back out, which I will, I won’t begrudge this at all.

4) And then there’s Boo. Where to begin? He is coming on really well at the moment. He was tasked with recognising lots of verbs by his Speech and Language Therapist at the last appointment, and he seems to have most of them down now. He can recognise (most of the time) red, blue, green and yellow. We’ve also introduced 6 jolly phonics flashcards: ‘m’, ‘a’, ‘d’, ‘f’, ‘g’ and ‘b’. He now says ‘m’, ‘a’ and ‘b’ when he sees the cards and can pull the others out if you ask him to find them even though he finds the sounds hard to say. He now says ‘wa wa’ for a drink and in addition to his signature ‘hiya’ is attempting ‘hello’. This is all very exciting and keeping me and my laminator busy! (Yes, I have a laminator…)

Physically, his lycra suit is continuing to work minor miracles. He is standing straighter in supported standing and this is enabling him to step. He is trying a walker next week in physio. We thought this day was a long way down the line for us. But that’s how much he’s come on recently. I’m trying not to get my hopes up in case this isn’t quite the right one for him, but there’s a walker out there for him. I know it.

OK, over to you. I hope you have lots of good news to share too!

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From a Cygnet on Undiagnosed Children’s Day 2014

I am a lucky woman. I have a lovely family, at the centre of which are two amazing children. I have fantastic friends and a good job.

One of my children happens to have quadriplegic cerebral palsy and epilepsy. How does that make me lucky? Well, because he is a marvel. Because he survived meningitis and prematurity. Because he is honestly the happiest child I have ever seen.

And I know that I am lucky because we have a diagnosis. I have answers. When people with the subtlety of the proverbial bull ask me ‘what’s wrong’ with my child, I can tell them. Many cannot. Though their lives and ours are very similar (endless appointments, therapies, battles for services and emotional highs and lows) they live with a cloud of doubt that doesn’t darken my days. And I am grateful for that. I never take it for granted.

That’s not the whole of our story, though. There is some uncertainty. When Boo finally had his big diagnostic tests last June (MRI, lumbar puncture, urine – for metabolic disorders – and bloods – for genetic testing) we were 98 per cent sure that we would get the CP diagnosis I had been told to expect since before his due date. But Boo’s seizure type (infantile spasms) can have devastating metabolic and genetic origins.

We hoped one child couldn’t be that unlucky. We hoped that having been born (with no explanation) at 29 weeks, contracting meningitis at 3 days old, sustaining a massive brain injury, there couldn’t be anything else. Surely?

It took a while for the results to come back. And when they did, CP was confirmed and the most likely explanation for the seizures (and Boo has been seizure free for 15 months now) is the brain injury. But…

There’s always a but. Boo turns out to have additional genetic material on the long arm of chromosome 22. The clinical significance of this is unknown. The testing, we’re told, isn’t advanced enough yet to tell us how or why this might be important. And perhaps it isn’t. The sensitivity of the available testing now means that many of us would be tested and found to be abnormal to a greater or lesser degree. But it could be significant. It might help to explain other things. All it’s done is provoke more questions.

As his parents we were offered testing. If one of us was found to have the same abnormality, and since we are healthy, then we could say for sure it was clinically insignificant. But that would take months. And if neither of us does have the same X-Men chromosome, then we are back to square one. So we took our CP diagnosis and said thanks but no thanks to the testing. We won’t be having more children. If we were, things might be different. And one day we will have to tell Sissyboo and suggest she might like to be tested. But for now, we’ve drawn a line under it.

I can’t pretend to know what it’s like to have a child who doesn’t have and isn’t likely to get a diagnosis. Plenty of people do and explain this with eloquence, humour and integrity. Many of these people are bloggers and you can read posts by a number of them on this wonderful blog hop for Undiagnosed Children’s Day on the SWAN UK website. SWAN, for the uninitiated, is an amazing project run by Genetic Alliance UK. The acronym stands for Syndromes Without a Name and it provides vital support to families.

Boo is not a swan. I think of him more as a cygnet. The fact that he is (mostly, at least) diagnosed means that our case is different. But SWAN members and bloggers have played a big part in maintaining what’s left of my sanity after the past two years. SWAN bloggers

abstractlucasareyoukiddingneycomplicatedgorgeousnessitssmallsworldjustbringthechocolatelookingforblueskyoneoffordinarytheaandnatesmam  and many others never cease to amaze me with their wit, wisdom and compassion. They lead crazy lives but they are never too busy to reply to a frustrated or moany tweet, offer advice or tell you to open a bottle of red and a box of chocolates and not be too hard on yourself. I think of them as my friends even though I haven’t met one of them in person. Yet.

So from the cygnets in Booland on Undiagnosed Children’s Day (and to SWAN that helps us all) a big thank you.

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A Tale of Two Nicus: Part I

In my second Throwback Thursday, here’s the start of our NICU story. I’ve never gone back to the out of area NICU Boo spent his first two weeks in. But one day I will be able to I hope. To thank them for all they did for him and us.

Premmeditations

OK, so where was I before I got distracted? Oh yes: in the NICU.

How could I forget? It’s not like I’ve really left there. I can still hear the bings, bongs and high-pitched screams of the monitors when I close my eyes, see the waves of respiratory rate ebb and flow, and most of all, I can smell it, that simultaneously hygienic and nauseating smell of hand soap. I sometimes wonder if I’ll ever leave that place or more accurately those places. For ours is a tale of two NICUs.

Seeing Mr Boo for the first time was amazing. He was small (although at 3lbs 11oz at 29 weeks, not that small), but he was perfect in my eyes. I was elated and couldn’t believe how I’d spent much of the night before worrying I wouldn’t bond with him or that it couldn’t be possible to love him as…

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To do…

Well, another school holidays are over and another all-too-short a break has been had. And I am more exhausted than ever.

I don’t know about you, but it’s only when I stop – if only briefly – that I ever have time to think about my life. And the outcome is almost always the same. I vow to change things. My life is complicated. I find it difficult, but I can’t change it, so I will do better. I’ll be more organised. I’ll fit in more ‘me time’. I’ll change the world while I’m at it, too … Of course, I never achieve any of these things.

This holiday has hit me harder than usual. I’m not entirely sure why. A combination of things most likely. I had to work a chunk of the Easter holidays and The Grumposaur was away with work for 10 days. Extra pairs of hands come in handy round here, and were missed, especially at the moment. You see, I have a really bad back. Carer’s back, the doctor called it. The bottom right side of my spine (around which is a huge muscle knot that won’t shift) is in agony without generous doses of co-codamol and ibuprofen. I have been assigned a lovely physio, who called my range of movement (which I thought good, ‘pretty appalling’) and who has given me exercises to do. Not lifting Boo – ‘the best piece of advice I could give you but I know you can’t take’, the physio said – is not an option.

Then there’s the fact that it’s been Easter. Easter’s hard for us. And the fact that this tricksy holiday moves around makes it harder still. The year Boo was born, it followed just days after his untimely arrival. On Easter Sunday 2012, we thought he would die of the infection that caused his brain injury. I will never forgive you for that, Easter, no matter how much chocolate arrives in the post. (I was never that fond of chocolate anyway). And this year I am crosser than ever that Easter made me wait three weeks after Boo’s birthday (a lovely but difficult day) until it came along to make me feel again the overwhelming fear I felt two years ago. Enough already.

And then there’s the fact that I have been forgetting things. This is really, really, really bothering me at the moment. Ever such a lot. I have forgotten to pay the Grumposaur’s credit card bill on time for two months in a row. It’s not that we didn’t have the money to pay it in full. We did. I just forgot and have the lovely overdue fees to pay for my stupidity.

I never used to forget things like this. I have – I mean, had – one of those brains where dates, numbers, birthdays etc. were all stored away and, as if I had Google Calendar in my head, I would get mental alerts about 3 days before I had to buy a card or pay a bill and that was that. Yes, I was that annoying. I used to annoy myself.

Not now, though. Now, I have a paper diary and a calendar and write myself a note once a week to update it, because otherwise I would forget to. I write myself post-its and send myself iPhone alerts to remind me to do the most mundane things. The day I have to send myself an alert at 6:45 to brush my teeth is not far away.

I haven’t forgotten everything, but it’s like the hard drive has been saturated with Boo files and there’s no more storage space and no disk drive to conjure additional memory. I can remember the dates of most of Boo’s many appointments for the next 3 months. Ask me when and where his 2-year review is in June and I can tell you. Ask me to tell you the number of paediatric physio (even though I have only ever rung it twice) and I can recite it backwards. But I forgot my best friend’s youngest daughter’s birthday in February. And I can’t remember what I have to prepare for the meeting I have at work tomorrow. Really, I can’t.

Frankly, this all makes me feel terrible. It makes me feel like a failure. A complete and utter failure. I don’t feel I can rely on myself any more. I feel as if my life is a mess.

I write to-do lists to help. They don’t. I wrote one out last night (after doing all the school admin I had left until the very last minute) and cried. I actually cried. Because none of it looks manageable to me at all. I have a long work list, with a couple of stressful and big projects that have to be completed imminently.

In order to do them, I need to declutter my brain a bit. But how? After all, there’s the Boo list. Gosh this is long. There are equipment and referrals I need to chase, and money that needs to be saved, info and long-overdue updates I need, not to mention the big long list of people to contact following Boo’s TAC meeting as we start researching schooling. And then I remember the therapy goals we have been set and remember that I haven’t done crawling with Boo for days, despite doing physio with him daily, and haven’t practised blowing for weeks. And Sissyboo has stuff going on, too, especially with a big dance show she’s doing in two weeks. On that to do list is a make-up purchase list (I know, it makes me feel sick too) so she can be seen under the theatre lights. She will have more make up than I have ever owned by the end of our shopping trip.

And there’s the house, of course. Paying those bills I can’t remember to pay any more, sorting out contents insurance and persuading people to put Boo’s adapted buggy on it, when wheelchair services finally tell me how much it’s worth. Just keeping on top of the tidying and cleaning (I so need a cleaner, please let me get a cleaner one day) not to mention the laundry post the Grumposaur’s case of Easter food poisoning feels like it’s beyond me.

The holidays are over and I want a break. From my life. That sounds awful, doesn’t it? But it’s true. It probably won’t be true tomorrow. If I’ve learned one thing since having Boo is that life and your attitudes to it can change rapidly, and just when you’re about to give up on something, things often turn around. And if my back gets better and I can run again, just to get that hour or so sanity saving break I need each week then I’m sure I’ll feel a whole lot happier.

But just in case things don’t change, maybe I’ll put ‘Take a break’ on my to do list. You never know. One day I might be able to tick it off that pesky list.

 

 

 

 

Birth Story Part 2: Labour

Now that the blog is a year old, I’ve decided to introduce a Throwback Thursday where I’ll reblog a post from the year before, when two people and a hamster read my musings, rather than the three, a hamster and a cat I rely on as readers now. And these posts tell me something important, too. Gosh, we’ve come a long way! Welcome to the story of Boo’s birth. Mrboosmum

Premmeditations

I’m not wild about suprises. Don’t get me wrong. If someone wanted to whisk me off to Paris tomorrow or if more than 4 hours sleep in a row were to come my way (pretty please, it’s been a year…) I’d be thrilled. But if I’m honest, I’d be much happier still if I had advance notice to work out my travel itinerary or know I could have a large glass of wine without regretting it. My dislike of surprises is one of many reasons why I find all of this so hard. I couldn’t plan for Mr Boo’s birth. I wasn’t ready. But what really kills me inside now is that I can’t plan for Mr Boo’s future. Will he walk one day? Will he have learning difficulties? Will the spasms come back? When Will we he be diagnosed with cerebral palsy? All I know is that I don’t…

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Spidey Boo: Loving the Lycra

Spidey Boo, Spidey Boo

Does anything that a spider can do…

OK, it doesn’t have same ring to it, does it? But let me tell you: we are loving Boo’s new spidey I mean lycra suit. The Grumposaur is a very keen (insanely keen) cyclist, so lycra and I have a long and difficult relationship. I have to confess, though, that I hadn’t heard of lycra for therapeutic use until Boo’s birth.

It was first mentioned to me not by one of Boo’s therapists, but by a parent of one of Sissyboo’s friends in the playground. She’s an adult OT, who until recently worked for a very overstretched OT service in North London. When I talked to her about Boo’s tone issues (the floppiness in his trunk versus the intermittent stiffness in his arms and legs) she said, ‘Push for dynamic orthotics, you know, lycra garments.’ I didn’t know, but like the research-obsessed parent of a child with additional needs that I am, I found out as much as I could quickly.

At the time, many months before his diagnosis, Boo was far too young for lycra to be of much use. But as time went on, I kept thinking about dynamic orthotics more and more. If only Boo’s trunk wasn’t so low tone, he could surely do so much more. It was on my Boo list (yes: it’s an actual list and it is huge) of things to follow up on. By coincidence, however, at his next physio appointment, his lovely therapist said ‘I think it’s time we thought lycra’.

Of course, nothing therapeutic comes cheap and costs have to be carefully justified and rationalised. So to test Boo’s suitability for lycra, we conducted a very high tech experiment. The physio went in search of some tubular elastic bandages to put round his middle. It turned out that no one in our huge hospital had any at all (and someone who worked there who recently went to A and E with a sprained ankle was apparently told by the person treating them that the hospital ‘couldn’t afford them any more’). So we had to wait until the next appointment.

This appointment was just a couple of weeks later, and the physio came armed with regular bandages that didn’t break the NHS bank account. She and Boo’s OT then tried their best to make Boo look like a Scooby Doo baddy by wrapping bandages tightly round his trunk while his expression gradually changed from disgruntled incredulity to disgust. He was not at all sure the Egyptian mummy look was in this season, but we could all see straight away what a difference this made. His c-shaped spine was more like a capital ‘I’. It was amazing.

Roll on a few months, during which the physio wrote a justification of resources and got a consultant to sign off on the cost, a measuring-up appointment with orthotics and then a fitting and hey presto. The Spidey suit came home.

As you’ll see from the pics, it’s like a mini wetsuit, tailored specifically to meet Boo’s needs. It gives him sensory feedback around his trunk to get his brain to send some of the necessary messages to his trunk muscles so they do at least some of the work they should. It helps him open his hands a little better, too.

It has its down sides. It’s breathable, but not the coolest thing in the world and necessarily very tight. Thankfully it’s good-looking enough that Boo could wear it on its own with a pair of shorts on hot days and he would still look his gorgeous, funky little self. But of course, we only have one suit and it needs to be washed (by hand, of course, no machines) and hand/air dried at the end of every second to third day of wear to be ready for the next morning. (Drying it out is not easy at this time of year, let me tell you.) It also brings with it some physical complications. Boo is a little stiffer at the hips now and his rolling progress went backwards in the days after first trying the suit as he struggled even more than normal to raise and bend his legs. We’re working on that and heading back to where we started now (a pattern we’re very used to in this crazy old life of ours).

For all these minor inconveniences, though, the benefits are enormous and we need to get as much evidence of these as possible in the next few months so that, hopefully, the NHS will continue to fund suits for him as he grows (which he is doing at an alarming rate). I hope to get a pic in the next few days to show you how much straighter his spine is in this. How much longer he can sit in a diamond sitting position. How much better and taller he stands (with our support, of course). For now, you’ll just have to trust me. But even just looking at this pic, will show you something small but significant in our world.

You might not see anything remarkable, but for me, this is a sight for very red and sore eyes!

Look how straight Boo is lying! Without the suit, if you lay Boo on the floor he’d be doing his best impression of the letter S, all squirmed and curved in the wrong places. He’s straight as an arrow here. That’s the lycra.

 Come on, Boo. What are you gonna do now?

Is he strong,?

Listen bud,

Can he swing from a thread?

Take a look overhead.

Hey there,

There goes Spider Boo.

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