Tag Archives: PVL

Small Steps Amazing Achievements

I have longed for the day that I could link a post to one of my favourite linkys with this title. Small Steps Amazing Achievements, is run by the lovely Jane over at Ethans Escapades. It isn’t exclusively a special needs linky, but many of us who post over their are, like Jane, parents with children who have additional needs and for whom the little things are huge.

But this week, Small Steps Amazing Achievements takes on a new meaning for me. And here’s why.

A few weeks ago we have an appointment with a rep from Rifton. As Boo has been showing lots of interest in stepping since having his Lycra suit with us supporting under his arms, his physio wanted us to look at walking frames. Boo needs one with various bits of support, especially round his trunk, and the Rifton Pacer seemed like our best bet. So we tried one out.

I was nervously excited about the appointment days before it took place. I want independent movement for Boo so much. I want him to have the chance to walk with an aid if he can. If the appointment went well, his physio would put in a justification to the panel to see if the PCT might fund the purchase of one for him. It was almost too much to hope for.

The day of the appointment was a bit of an anti-climax, though. The rep was lovely, and my heart did skip a few beats in joy when it turned out that Boo didn’t need all the supportive kit the Pacer can provide. (We were taking bits off a piece of equipment, folks, rather than adding it on!) But the much-needed thoracic support on the Pacer which was keeping Boo upright was also clearly going to cause him problems.

You see when Boo steps with us, he initiates the first movement by using his high tone by going into extension (so stretching himself up and back) which gives him the rotation he needs to get going. Obviously he shouldn’t walk like this, but as his physio says, ‘if you’ve got it, flaunt it’, even if what you have is high tone. The thoracic support prevented Boo from doing just that.

He stood up quite happily in the Pacer. In fact he really seemed to like it. I think he thought it was a standing frame, but then looked concerned when it started to wobble if he pushed on the hand grips. But the brakes on Mum, his perplexed expression said.

We did get him to step, but only by initiating every single leg movement manually from behind him. We tried all manner of bribery and corruption but nothing persuaded him or enabled him to get his legs moving on his own. The minute we got him out of the walker he wanted to step. But not in it.

My heart sank. I worried they wouldn’t put a justification to panel. I worried this would go to the bottom of the list. But his physio and the rep were lovely. They said Boo would get the hang of this eventually. He would have to learn new ways of doing things, but he’d done that before and he and I were pretty determined people so they would work on the quote and justification.

Two weeks later we went for Boo’s next physio appointment where we learned that the justification was drafted and ready for panel (whenever they next convene) but in the meantime, since these things take ages and outcomes are always uncertain, an old Pacer had been found in stock for us to borrow. We tried again to get some stepping going, but nothing doing.

We took the Pacer home, but during half term we ended up travelling a fair bit and couldn’t fit it in the boot with all our other kit. Heck once Boo’s buggy is in the car, never mind the rest of his essential kit, we can barely take clothes with us.

When we got back I decided we would have a concerted go at getting Boo to get what the walker was all about. Instead, my poor old back just suffered dreadfully as I manually moved each one of Boo’s legs with one hand while holding the frame with the other and wearing holes into the knees of my already falling apart jeans. I had a terrible back pain flare-up and developed hideous pins and needles down one leg. My physio – yes, I have one too, now – was not impressed with me.

I got lots of helpful advice on Twitter about incentives to get Boo moving. I tried crinkly surfaces, a ball to kick and a mirror to walk to (which is a good trick for most other physio exercises we do). No luck. Boo just kept giving me the cute ‘Why is my standing frame moving, Mummy, and why don’t we watch In the Night Garden instead?’ look.

I decided to give it a break. I had to give my back a break. And then a couple of days later I was doing the vacuuming and listening to the apoplectic squeals of delight Boo makes when I turned it on, which quickly turned to shouts of ‘more’ when I turned it off. (Sissyboo used to like hoovers, too. They do not get this love of vacuums from me!)

It gave me an idea. I asked Boo if he wanted to do some steps to the vacuum and then we could turn it on again and play. He said ‘yeah’. So I strapped him in and told him what we were going to do. I knew the first step wouldn’t come naturally, so I made it for him and then asked him to step fully expecting him not to be able to. As I reached down with my hand to make the next move, he bent his leg and brought it forward.

I pushed the frame and said step. The other leg bent, rose and landed. He was stepping. He was only bloody stepping.

I tried not to let him hear I was crying in case he thought I was sad. I was anything but sad. I was bursting with happiness. Ten paces later we were at the vacuum and I turned it on and pretended to hoover him up. He brought his knees up to his chest in delight (don’t tell his physio that, OK). And we did it once more.

20 steps in total. In a frame. With assistance. Small steps, definitely.

But honestly, I can think of few more amazing achievements for Boo. I don’t know what this means long term. I don’t know if some steps will turn into lots of steps. If one day he might walk about school in a walker. For now, that doesn’t matter. What he has done is what matters, not what he might or might not. Because these small steps forward couldn’t be a bigger indication of his capacity to try and surprise us all. I am so proud of you, Boo. So very, very proud.

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Diagnoses and Other Dilemmas

There is a day I have been anticipating and dreading in pretty much equal measure for months now. It’s known to parents like us as D-day: the day your child’s diagnosis lands on your (in this case inappropriately named) welcome mat or is delivered by a consultant in a hospital.

Boo’s diagnostic tests (MRI, lumbar puncture, full bloods for genetic tests and urine for metabolic disorders) were performed three months ago. But in many ways, we have been waiting for D-Day for 18 months. From the fourth day of Boo’s life. The day after he contracted meningitis, the day we were told he had sustained a significant bilateral brain bleed.

When a CT scan at 8 weeks (three before he was supposed to have been born) confirmed that Boo had PVL (softening of white matter in the brain around the ventricles that had dilated following the bleed) and that cystic changes had ensued, we knew the odds were that this day would come. And then we noticed Boo’s increased but variable (i.e. it comes and goes), assymmetric tone (worse in his arms than his legs, worse on his right side than his left). We started racing towards it at break-neck speed.

But then again, he had great eye contact, he smiled and laughed. He was gorgeous and healthy. Maybe it would all be OK. Maybe cerebral palsy wasn’t our unavoidable destination. And then at 6.5 months corrected age Boo developed infantile spasms, a catastrophic form of epilepsy, and if there was any hope that he was going to be one of the babies who gets away with prematurity and brain bleeds it was cruelly snatched from us.

From then on I have to confess that I wanted the diagnosis to be confirmed. I felt we needed it. Not having a diagnosis felt like a punishment. Because every time people asked how Boo was or why he wasn’t sitting I had to say, ‘Well he has brain damage and he might have cerebral palsy’. ‘I’m sure not’, people would say, ‘Don’t believe the worst till you have to’, they would mutter to my great irritation (as if I were wishing my son to be disabled).

Even more than me, I felt, The Grumposaur needed a diagnosis, to help him accept what had been painfully clear to me for months of therapies and hospitals. Boo wasn’t going to catch up. Boo might hit milestones but nothing would come naturally to him. Call it Holland or what you will, this place we were inhabiting was our new home whether we liked it or not.

I resented the spasms. Not just because they were bloody terrifying and aggressively parasitic. No: I resented them because they prevented us getting a diagnosis. Most people involved in Boo’s care treated him as if he had quadriplegic CP caused by his brain damage. That explained the mixed tone, the developmental delay. But the spasms (though most likely caused by the same brain damage) could theoretically have had other causes – awful and potentially life-threatening genetic or metabolic causes – that can have a similar presentation to CP. So no diagnosis until these other things could be ruled out.

We had those tests in late June, on the first day of Wimbledon. And the wait for the letter to end up on our mat has been excruciating at times. So when nearly three months had passed I called to find out when we might expect the results. It turned out most had been sent to our hospital some six weeks earlier but no one had thought fit to tell us or even put them in the post. I won’t rehearse this sorry saga again here as I blogged about it last week. And more has happened since.

Here’s all you need to know. The MRI essentially confirmed what we knew already. Boo was born 11 weeks early and had a grade 3 bleed on one side of his brain and a grade 2 on the other resulting in PVL and cysts. The lumbar puncture showed no problems. His urine needs to he done again as they didn’t test it quickly enough, but the chances of the particular nasty they’re testing for being applicable to Boo is miniscule. All genetic tests tests for known syndromes came back normal.

But…There’s always an effing ‘but’, isn’t there?

But…they found a small amount of extra genetic material on the long arm of chromosome 22.

What does that mean, I hear you say? ‘What does that mean?’ I asked one of Boo’s consultants. The answer, according to the report which I still haven’t seen, but which has been read to me on the phone, is ‘not known’.

Not known.

There are a number of syndromes connected to this chromosome, but Boo didn’t test positive for any of those (most of which pertain to duplication or deletion of the chromosome not to additional material being present). It is possible that The Grumposaur or I have this same slight genetic imbalance. They have offered us genetic testing to see if that’s the case. More meetings, more waiting. The  pay-off would be that if we are found to have the same imbalance and since we are, to all intents and purposes, healthy at present then it is probably insignificant. A red herring. If we don’t have the same small amount of genetic material on the offending chromosome then we are back at square one, not knowing if it’s significant and no way of treating it if it is.

Thoughts ricocheted round and round my head as the consultant spoke to me. So what do we do, I thought? Do we get tested in order to hope we prove to have the same abnormality and then declare it unimportant? Or do we ignore it, safe in the knowledge that even if it is significant, knowing that wouldn’t make it any difference to Boo’s treatment? Do we go down a potentially long road of testing in the hopes that geneticists’ understanding catches up with their analytical abilities? Would any of Boo’s team of healthcare professionals think badly of us if we don’t get ourselves tested? Is it irresponsible not to do so?

If Boo hadn’t had infantile spasms, we have been told, it is unlikely they would have offered this raft of tests. His presentation and birth and early days history points as clearly as possible to cerebral palsy and for the brain damage causing the seizures, which, mercifully, he has been free from for over 8 months. As I understand it, the known genetic and metabolic disorders that can cause the spasms have now been ruled out.

All these questions, and more, crowded my mind but in the end, and somewhat to my surprise, the one I most wanted the answer to was this: ‘If we don’t get tested, will this prevent you giving him a formal cerebral palsy diagnosis?’

The answer: ‘No. I think when you formally get the results from Dr X in a few weeks [oh yes, we have to wait another month!] I think you will be given the quadriplegic cerebral palsy diagnosis. That is Boo’s presentation. That is what we are treating through therapy.’

I asked for time to think about things. Time to decide whether to go down the genetics route. Time to consult with The Grumposaur. I clearly need this diagnosis more than I thought I did (and let me say now how lucky I know we are that we will get one as so many parents don’t as my many SWAN friends in life and online know only too well). But even so, I maintain The Grumposaur needs this even more than me. He has the casting vote.

But as for me? I’m done. I don’t want to go down that path unless The Grumposaur wants to.

Because I am sick of brick walls, dead-ends and tail-chasing. I am exhausted by waiting and fretting.

Most of all I am fed up to my back teeth with focusing on Boo’s ‘problems’, on what he can’t do (yet). I am done I tell you. DONE!

I want to move on. I want to tell the world that my son has cerebral palsy. That he nearly died and survived only with terrific brain damage. And that he is bloody marvel. That he can do so much. That we are helping him to do more. That he is not his ‘condition’ or whatever euphemism you want to use. He is a little boy. A funny and beautiful little boy who has a life of great, if perhaps not conventional, potential.

It’s time to focus on the good, not the bad. Of course, this isn’t going to be easy, and the anxieties and frustrations aren’t going to end just because I want them to. But I want to move beyond unfeeling clinical terminology and to the richness of the life that stands before us.

I thought I wanted a diagnosis. It seems we have one, and for that, as I said before (knowing how things could be very different) I am glad.

Actually, though, what I now know I really wanted was the opportunity to live beyond diagnosis. An opportunity to live our lives. To move on.

And to my great surprise, I find that I have. Already.

My name is Mrboosmum. My son has quadriplegic cerebral palsy and epilepsy (under control currently with medication). Oh and in case you didn’t know, his strength, determination and wicked sense of humour make him just about the most amazing person you will ever meet.

Happily Ever After? It’s all a Matter of Perspective

Sissyboo has a bit of an Apple fetish. She is almost as obsessed about I-products as her Dad. And that’s saying something. If she’s not trying to watch the latest episode of The Dumping Ground on the iPad, she’s got my iPhone in her hand so she can pull Talking Tom’s tail or watch Annie in Portuguese (I’m not kidding, this has happened more than once). Her latest favourite hobby, though, is trying to watch that YouTube video where a talented American guy sings about what happens after the happily ever after for Disney heroines Ariel, Jasmine, Belle and Pocahontas. In case you haven’t seen it (look it up, it’s great!) all I’ll say is it involves BP oil spills, Guantanemo Bay, accusations of beastiality and STDs. That’s why I said trying to watch. We turn it off, much to Sissyboo’s consternation, when she gets to the juicy bits.

I love the video and not only because it’s a great antidote to the Disney Princesstastic world we live in as parents to a 5-year-old girl (don’t get me wrong, I like a lot of these films, just not always what the merchandise turns them into). It also speaks to the cynic in me. I often struggle to buy the supposedly happy endings of films or great novels and sometimes struggle to believe their scriptwriters or authors believe them either. Take Jane Austen, for example. Marianne Dashwood in Sense and Sensibility would never be happy with Colonel Brandon. He’s not really Alan Rickman, after all, whom I would marry in a heartbeat. No: Colonel Brandon is a gouty old man wearing a flannel waistcoat for heaven’s sake. She’s a teenager with an overactive imagination and sexdrive. This is not what she wants and I’m never convinced by arguments it’s what she needs either. And don’t get me started on Lizzie Bennet and Darcy. He’s not Colin Firth, lest we forget.

But for all my cynicism about the endings of books and films, I’ve found that my attitude to endings in life is rather different: somewhere between the sanguine and the downright optimistic.

Since having Mr Boo I’ve had to get used to people (including ourselves) talking about our life like the contestants on a reality show. We don’t have a life any more, it seems. We have a ‘story’; we are on ‘a journey’. And of course, stories end and journeys are supposed to conclude, one way or another. (As an aside, I think this is why I’ve been so totally seduced by the messiness and unfinishedness – I know that’s not a word, by the way – of blogs.)

The possibility that Mr Boo’s story would not end well was brought home to us early on. As I’ve written about before, it never really occurred to me until Mr Boo was a week old, and succumbed to meningitis, that he might not survive his premature birth. But I soon realised that everyone else had feared this right from the start. After he was born we received so few cards celebrating his birth compared to the days following the birth of his sister (and we have a whole lot more friends now). People who did send cards often wrote a note saying they would send a gift when he came home. I soon realised they meant if, not when. Don’t get me wrong, people were caught on the backfoot when Mr Boo was born (as we were) and I didn’t covet gifts for him. But it felt as if the (non-)contents of our letterbox were writing him off every day. People didn’t expect him to come home. That hurt. It still does.

But all’s well that ended well and we got out of the NICU. In 6 weeks. 5 weeks before he was supposed to be born. We were so thrilled. We thought, in our naivity, that the biggest hurdles were overcome (and to an extent, we were right). We had our happily ever after. And it was heavenly for a few days. And then we had more headscans. And then Mr Boo didn’t start doing things he should. We were just starting out, it turned out.

I went back to work this week and to ease the transition and to avoid having the same conversation I’ve had with so many well-meaning people since Mr Boo’s birth I sent an email round to my colleagues explaining precisely what had happend in the 13 months since I dashed out of a meeting to phone for an ambulance. I was candid and went into enough detail in the email to give people a clear picture of what our life was like now. And I’m so glad I did it. But even so, friends still wanted to know the same thing when I chatted with them in the corridor yesterday: ‘He’ll recover won’t he?’ ‘Will he be OK?’ And they tried to reassure me: ‘It’ll be alright in the end, I’m sure.’ When is this mythical ending day, I wonder? When did life become a Disney film?

Of course, I’m touched that people want the very best for Mr Boo and for us. And I am so grateful for their love and support, which has carried me through much of the last few months. But I find that I can’t really answer their questions or address their comments. I just smile and thank them. Why? Not because we don’t know how things are going to pan out (and of course, we don’t know how extensive Mr Boo’s physical and cognitive development will be impaired by his brain damage). No: it’s because I think we’re speaking at cross purposes.

Will he recover? No. He has permanent brain damage and brain plasticity, while marvellous and utterly beguiling, can never fully repair what’s been lost. But will he be OK, will it be alright in the end? Well if this means (as I think it variously does) will he walk or go to mainstream school, the answer is: maybe; or then again, maybe not.

But will he be OK? Of course. He is OK and he will be OK. He is the most lovely, contented yet determined baby I’ve ever met, and he loves and is loved so much. It will be alright in the end because it’s already alright. It has been from the beginning actually.

Our life isn’t perfect. Whose is? I have cried more in the last year than I have in my whole 36 years to date and I would do or give up anything to get a better start in life for Mr Boo. But at the end of each day I am more genuinely and deeply happy than any Disney or Jane Austen heroine.

Happiness, I’ve discovered, is a state of mind, not an objective reality. End of.

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World Meningitis Day 2013

Today is World Meningitis Day. I found out, like I find out about most things these days, from Twitter, where I found a link to a moving post on Looking for Blue Sky. I couldn’t let the day pass without comment.

You see, Mr Boo’s health problems are only tangentially related to his premature birth at 29 weeks. He was born, so far as a baby born 11 weeks early can be, strong and healthy. And then at 3 days he contracted an infection and nearly died. You can read more about this horrible time here.

We still don’t know for certain that it was meningitis because the sample taken was contaminated, but we were told it was 99.9 per cent likely. That’s good enough for me.

We are lucky. Mr Boo survived, but not unscathed. Before he responded to treatment he suffered a bilateral IVH (brain bleed), which developed into PVL (death of white matter) and means he very likely has CP (cerebral palsy). He also has IS (infantile spasms, a form of epilepsy) caused by the damage. I live in a world of acronyms now.

We couldn’t have prevented Mr Boo’s meningitis. He couldn’t have been diagnosed or treated more quickly. But you might be able to spot meningitis in your child before the disease takes hold.

Please, please, please familiarise yourself with the symptoms of meningitis and trust your instincts if you are worried about a sick child. This is one of the many lessons I have learned since having Mr Boo.

Please look at the Menigitis UK website today and pass the link onto your friends. There’s lots of good information there and a helpful diagnostic video, too.

I am not writing this because someone asked me to. I am writing this beause we live with the consequences of menigitis daily. And I don’t want you to.

Getting Over Being Overwhelmed

I woke up this morning full of optimism. I’d had a reasonable night’s sleep by my paltry standards, my fab Homestart volunteer was coming to give me a couple of hours to catch up with myself, and I was going to get lots done. Heck, the sun even came out in smpathy.

But within a few hours, that all-too-familiar tidal wave of anxiety came over me. The knot in my stomach drew tighter. I was drowning. I had prescriptions to sort out, appointments to chase, emergency childcare to arrange when it turned out that the two next week, which I’d been assured would be mid-morning, clashed with school pick-up. I had a DLA form to complete (the shortest road to depression I have yet encountered – it’ll hit you by page 3 guaranteed) and two carers forms to fill out. I even had to chase a 3-month old referral to the keyworker who is supposed to be managing all our referrals. I kid you not.

Every form in which I had to list Mr Boo’s problems – PVL (brain damage), likely Cerebral Palsy, infantile spasms, developmental delay – felt like a punch in the gut. I needed distraction, and another cup of coffee was not a good idea, not if I didn’t want to do my best Mrs Overall carrying the macaroons impression. So I checked my blog stats.

I know this is not advisable for morale, especially as such a newbie blogger, but a few people do seem to read this (thanks!) and I love that. But before I got to the stats I stopped in my tracks. I looked at my blog header and just stared.

I long to put photos on this blog, I am a rubbish (and I mean rubbish) photographer, but I have a ton of photos and because my kids are in them they are fabulous, even if I do say so myself. More to the point, I know how much photos mean to blog readers, perhaps to none more so than readers whose children were born prematurely, or who have disabilities or special needs. To SEE how your story may develop is thrilling. If I could make one NICU parent smile by showing them what a robust and cheeky monkey Mr Boo is now, my day, week and year would be made.

But I am a secret blogger. No one knows I am writing this, not even The Grumposaur, who I fear might not get it or approve. Unless and until I out myself, I can’t very well put up pics of our kids on this blog. But I do have the joy of being able to see the real Mr Boo, to look at our header pic and see how far we’ve come.

The knot in my stomach starts to loosen and I can breathe again.

You are so much more than a list of diagnoses, Mr Boo. You are a marvel. And I love you and your sister more than I can say.

Good News Friday

Writing up our birth story has been incredibly therapeutic. But whenever I relate Mr Boo’s story, I always feel dissatisfied. In some ways, it’s much easier to do this in print than in person. That way you don’t have to deal with the emotions of others. I know how selfish that sounds. But however I tell Mr Boo’s story, I know how inadequate the facts (meningitis, PVL, infantile spasms, vision problems, developmental delay, cerebral palsy) are to our experience. Life is hard (whose isn’t?), the appointments are relentless and draining, the worry sometimes paralyses me. But our lives are full of fun, laughter and great pride.

So, in part to remind myself of this and, if this doesn’t sound presumptious, to offer hope to and to show solidarity with other parents of prem or special needs babies, I have decided to make Fridays ‘Good News’ days.

My intention is to celebrate the good things in our week. My hope, if others find and like this blog in the future, is that it they will feel free to share their good news too in the comments section so we can all go into the weekend a little buoyed up.

The good news for Mr Boo this week is that his bronchiolitis (his third bout since Christmas) has almost gone. This means we are all sleeping better. (Six hours straight last night for the second time in a year! Yay!) It also means we can get stuck into the daily physio we do at home and work on those inchstones, as I’ve learned to think about them.

In more good news, at our fortnightly physio appointment on Thursday, Mr Boo was showing some small but significant steps forward. His head control (pretty good but not perfect) is improving, he is starting to self-correct when tilted in a sitting position and even putting hisoften uncooperative arms out to balance. They seem sure he will sit independently now. His weight-beairing was described as impressive. He is even trying to creep. This is HUGE!

The best news, though, is that he is back to his super happy, giggly, amazingly contented and determined self.  He has loved that Sissyboo is on school holidays and she has encouraged him in ways that no physio could, with love and an intense bond that makes me happy every day.

I hope you have some good news, too. I’d love to hear it!

Reflections of a novice blogger

What the heck am I doing? It’s a question I’ve asked a lot over the last twelve months. I used to know what I was doing. At least I think I did. But now I’m not so sure.

When I was pregnant with Mr Boo, our much longed for second child, I looked forward to being more relaxed and better equipped than first time round. After all, I’d done it before. So much for confidence.

Now all I know is I know nothing. About Mr Boo’s future or about what our family’s life will look like in ten years or even tomorrow. Frankly, it sucks!

But I do have something of an idea about why I’ve started this blog, even if I don’t know much about blogging or if people will read this. Is there anyone out there?

Since having Mr Boo last April (more on that next time) I have devoured blogs. I had never read one before. Now I feel connected to people all over the world that I’ve never met. And I may never meet Kylie, Amymouse, Jennie, Premmy Mum, Jessi, Tatum, Beadzoid or Mummy Pink Wellies. But their words and pictures have given me what few family members, friends, healthcare professionals or medication could: hope, wisdom and above all a feeling of community. They make me feel less lonely on this crazy, frightening path we tread.

One day I would love for this to make someone else feel the same. But I can’t claim to be doing this for wholly altruistic reasons.

I need to talk.

So much of premmie life is spent not saying things or saying things you don’t mean to make others or yourself feel better, or to give the illusion that everything’s OK, or that you can cope. Such self-censorship does not come naturally to me. In my other life (to which I must return soon) I am immersed in words. In the last year I have become terrified of some (cerebral palsy, infantile spasms, developmental delay, special needs…). But even so, I still believe in the power of words to alter perceptions and change realities.

So here it is: my words; my blog; my life; my feelings. I may not know much, but I think writing this is a good idea. Although I could be wrong.