Monthly Archives: September 2013

Good News Friday #25 and a Big Thank You

How on earth did it get to be Friday? More to the point, how did this get to be Good News Friday #25? This means, of course, that I have been blogging for nearly six months. When I wrote my first post and first Good News Friday, I didn’t know if they would be the last. I didn’t know if I could keep up the momentum of blogging (it’s been a struggle sometimes, but I’ve just about made it), or whether anyone at all would ever read this except me. That they do read this small, nichey blog, amazes and delights me daily.

I’ll reflect a bit more on my six months of blogging next week (Wednesday is the big day), for now, it’s the time of the week where I like to accentuate the positive and think about the good things that have happened this week, in a bid to get a bit of perspective on things (seeing past diagnoses, genetic tests, ongoing battles, problems with Sissyboo at school, and no washing machine for the past 10 days) and, as importantly, to gently encourage you to share any of your good news with me in the comments box or on Twitter (@premmeditations) or on the blog’s Facebook page.

So my good news:

Well, there’s Boo’s standing frame and boots, which I blogged about earlier in the week, so I won’t say too much about them again here, except to say that they are still causing endless hilarity and excitement here with Boo and Sissyboo. Long may that continue.

Then there’s conductive education. This week The Grumposaur came and he has committed to trying to do the sessions with him alternate weeks to help me with work. This is huge for all of us. The control freak, I mean adoring Mum in me (actually I am adoring Mum and a control freak, as you might have guessed if you regularly read this blog) would like to do all the sessions myself, but I am also struggling with work and I am desperate for The Grumposaur to be more involved in Boo’s therapies and treatments. I haven’t kept an exact tally of Boo’s appointments since leaving hospital last May, but it must greatly exceed 150 appointments, of which The Grumposaur has been at 3 (1 by accident as he happened to be in the hospital when the consultant walked in). He had a great time, and so did Boo. They adore each other. Being so involved in something so positive (not an appointment where we’re told, again, what Boo can’t do, but where we work with him to work on what he can) is energising and wonderful. I hope they both get lots out of it. It will be hard for me to let go of something (if only on an alternate week basis) but I know I need to. Some weeks I feel like I am going to snap in two.

But the big news this week is that The Grumposaur and I are going away for a night at a spa without the kids. We’ll be gone less than 24 hours and the kids will be with my Mum and sister. You can probably count the number of nights out we have had since the kids were born on one hand. We haven’t been away for a night together on own own since July 2007. It will be lovely. We deserve it. The kids will be fine. But I am still very nervous. Nervous Boo will keep my sister awake all night. That Sissyboo, who is having quite a wobble at the moment (Boo and school-related) will be difficult. If I’m honest, I worry we won’t have anything to talk about except the kids. But I hope it will be like it is on the odd occasion I go away with work: difficult until the moment I get there when it’s lovely and peaceful and I can worry (mostly) about me and only me. I’ll let you know how it goes next week.

The biggest news of all, I think, though, is that we have got through this week. A week of diagnoses and the dilemmas they have presented us with. We have decided not to get ourselves tested to see if we have the same genetic imbalance as Boo. We are content with the cerebral palsy diagnosis. We are moving on. And that feels huge.

I cannot thank all of you enough for the lovely comments you have written and tweets you have sent in response to my Diagnosis Day post. Many made me smile. Others made me cry. Mostly they made me feel welcomed, understood and extremely lucky to be part of the amazing community of parents in the blogging/tweeting world.

Thank you all. I haven’t been able to find the time to respond to all of your comments yet, but I will. They mean a great deal to me.

I hope you all have great weekends, and do share your good news. We love to hear from you.

Will the Real Mr Boo Please Stand Up!

Special needs equipment turns out to be like those proverbial buses. We have waited months and months for Boo to be assessed for the seating he so urgently needs and now he has been and hopefully, fingers crossed and if the wind blows in the right direction, the funding will be found and we will get a chair for home and nursery in about 6-8 weeks.

In the meantime, we saw Boo’s lovely physio this week and were presents with these funky things.

 

 photo (20)

For the uninitiated, these are Piedro boots: orthopaedic footwear to help kids like Boo with foot stability, to help toe spreading (rather than the curling and toe pointing his high tone can produce), and encourage weight bearing. They hopefully will also help with sitting in the Breezi chair I got him and get us nearer than 90 degree angle we’re looking for.

They are also essential for this:

 

photo (18)

See what I mean about buses! This is a standing frame on loan to us from our physio until they put in a grant application to fund one (fingers on other hand crossed now) in the next few months.

Of course, no parent wants their child to have to use a standing frame. And we are still working, when we’re not focusing on our main goals (sitting and rolling from back to front), on getting him to stand by just using us for support. But the standing frame can do important work by encouraging weight-bearing in a posturally optimal way. This, in turn, we hope might help to prevent it mitigate the hip problems (displacement, for example) that trouble many children and adults with cerebral palsy.

I had mixed feelings about getting Boo strapped into his Dalek-mobile, as we now call it. But I knew the potential benefits. What I should have anticipated, knowing Boo, but didn’t, was how much he would love it as the cheeky glimpse of his smile in the photo will tell you.

From the minute he got into it and stood proud and tall he started giggling and shrieking. (So this is what the world looks like from this angle! Look, no hands, Mum.) And when he realised that the play tray was only attached by Velcro and concealed a bowl to put toys, dried pasta or messy play objects in, he looked as if all his Christmases had come at once.

OK this isn’t independent play, exactly, since he is dependent on the frame and boots for stability, but he could play without me holding him up. And he clearly got a huge kick (pun intended – being kicked by a baby Hulk in Piedro boots hurts, for the record) out of something that only ever happens when he’s on the baby gym he’s way too big for.

I wish I could post that Boo is standing freely – her may never do that – more than that I wish I could post that he is sitting. I desperately want him to sit. But this is a step in the right direction. A step towards a new perspective on life for Boo and for us. A step towards independence. And that feels pretty amazing.

 

a4641-smallsteps

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.

Good News Friday #24

I started my blogging week by listing some of my frustrations with our ongoing struggles with services and determination to do more to help other families facing similar difficulties. So I’m glad I’m finishing the week with some good news (conveniently forgetting that Boo has broken his glasses, the boiler’s packed up and, worst of all, our washing machine is now broken).  There’s always good news. And today the sun is shining, my Mum and sister are staying for the weekend and it’s easier to see it.

So, we have two bits of big news this week.

First, after all our trials trying to access OT services to get appropriate postural seating for Boo. Don’t worry, I won’t rehearse the whole sorry saga again but you can read about it here. The good news is that we have seen an OT (health) twice this week. She was lovely. She confirmed the urgency of Boo’s case (ya-huh, she says sarcastically) and advised he needs a Jenx Bee for home and nursery. Strictly speaking OT (Social Services) need to sort out one for home but we haven’t yet seen them either (although a complaint to them means it will likely be soon) so the OT (health) has said she will order it and sort out the details later. I can’t tell you how much it means to us that Boo will have appropriate seating. That he will be able to do some more independent play. This had been such a long road for us, and to be honest, I’m still not going to believe it until I actually are the seats, but I can see the light at the end of that proverbial tunnel now.

Second we started conductive education this week. I went into it open minded and came out feeling very positive about the whole thing. I’ll blog separately soon about what conductive education is and what it’s doing for Boo and us as a family but for now let’s say I’m cautiously optimistic it’ll be good for Boo. And for me, it was great. The teachers were amazingly supportive and lovely and being in a place where all the kids have CP or neurological disorders was so liberating. Oh and Boo highly approved of the chef and the amazing lunch he made him (homemade veggie sausages, mash, broccoli and gravy). The only thing that made Boo cry in 3 hours in which he was worked so hard and in unfamiliar ways was when he finished his pudding: a massive portion of homemade strawberry cheesecake. So they gave him seconds! As for me, well I felt like I spent 180 minutes rubbing my tummy and patting my head (so much to remember and much of it interestingly different from things I have been taught by a Bobath trained physio). I hope I learn as fast as Boo! And also that there’s cheesecake for Mums sometimes too.

But it’s not all about Boo. Poor Sissyboo has been a bit neglected on the blog lately. But lots has been going on in her world. She started a new after school club in drama, dance and singing. Don’t think I’m a stage mother or anything of the kind. I need an extra hour at work on a Monday and Sissyboo loves role play, theatre and film. She also needs to build her her confidence, shaky at the best of times outside the home but much more fragile since Boo’s arrival. She seems to really like it! And she’s started violin lessons at school. I used to play (not for 20 years, since I badly hurt my wrist in a woodwork accident at school) and she has always been fascinated by my old violin in the loft. I went to hire one with her last week from a fabulous local music shop and she spends a few minutes each day proudly showing it to people and polishing it. Her first lesson went well so we’ll see how that goes.

Anyway, more from us soon, including, I hope lots more good news. I hope you have some too. Would love to hear it as always!

It Takes Two

It’s been a bit intense here for the past week or so, so I’m thrilled that Small Steps Amazing Achievements has come along to knock some sense into me and remind me how good things can be.

One of the loveliest things about Boo is how friendly and sociable he is. These things get commented on frequently, especially by healthcare professionals. They read about Boo’s catalogue of medical problems before meeting him and assume certain things about him: that he won’t be able to engage with the world around him; that he won’t be sociable; that he won’t vocalise or have words; that he will be angry and frustrated. None of these things is true. He smiled from 2 weeks of age (corrected), has always had good eye contact and loves people, who he interacts with though noises, facial expressions and mimicry.

I don’t take any of this for granted. We are incredibly lucky that he does all of these things, that his brain damage doesn’t seem to have affected his sociability.

But for all his love of being around lots of people, Boo necessarily spends a lot of time one-to-one with a solitary grown-up. It’s how he learns. In order to maximise his physical potential, he has a least 1 1/2 hours a day with one adult doing physio, or attempting to self-feed, or practising fine motor skills (a real challenge for him). This is one of the many reasons that when we were deciding on childcare for Boo when I went back to work we came to the conclusion that we wanted him to go to nursery. He needed and deserved to be around kids his age, we thought. He gets precious little of this normality in his life.

But of course, the minute you put Boo with other kids his age or (in fact, as things are in his nursery) younger kids, his difference sticks out like a sore thumb. He can’t crawl with them or chase them if they run off with his toy. He even has to have his own box of toys, mostly plastic, easy to hold, flashy noisy toys that he gets good sensory feedback from, in a nursery where all other toys are, as a matter of policy, natural (wood, metal and cloth). The other kids covet his contraband toys. They love the gaudy, flashy, lighty toys they can’t have. And they are mesmerized by his glasses too. They long to play catch with them…

Some days, on not so good days, I worry that putting Boo in a group with lots of healthy, neurotypical kids, just teaches him he’s not like them. But then I started to notice some small changes that make me feel we made the right decision.

Boo has started to play with the other kids.

It started when I went to pick him up one day and Boo was tapping on a saucepan with a xylophone stick. Aww, I thought. The awws turned to ahas, however, when I noticed he wasn’t just doing this on his own and randomly. He was copying a little boy (the youngest sibling of one of Sissyboo’s friends) who was beating the living daylights out of a wok on the other side of the room. N smashed his wok. Boo responded by tapping his saucepan. They were both giggling as each took their turn. If I didn’t know better I would say they were developing their own brand of baby morse code, like prisoners of war in solitary confinement. ‘Let’s escape the nursery… Let’s persuade Hermoine to be sick so the girls run to help her and we’ll shimmy out the window.’

And then the other day The Grumposaur went to collect Boo and he saw him passing a toy to another boy who passed it back again and so on. Letting go of things is very hard for Boo. Getting them is such an achievement, and then his brisk reflexes kick in and releasing his grip is hard. We have been working on it, periodically (along with the 1001 other things we are supposed to work on every day) and he is getting better. But to do this passing game with another child is a huge step forwards.

You see the basis of most interpersonal relationships for Boo is like this. Someone puts him in a particular position and expects his to do something. Grab something, move in a particular way, make a particular sound. And then he does it or tries to do it and then he gets inane smiling from accompanying adult, lots of praise and a round of applause. Seriously, he looks for applause after he does most things. (Life is going to be such a disappointment for Boo…) And of course kids don’t clap and aren’t easily impressed. They snatch, they cry or pull faces most of the times. These are far less enticing and rewarding interactions for Boo. But he loves other kids, just as he loves grown-ups. He wants to interact with them too, even if they aren’t going to give him a standing ovation for playing with a pop-up toy.

It’s not like he’s taken up chess or anything, but these small glimpses into a world of play with other kids his own age are priceless. And I hope there are many more to come.

a4641-smallsteps

Good News Friday #22 with a Side Order of Motivational Monday

When Good News Friday appears on a Monday, you know the good has been peppered with, or more like drowned by, a whole heap of crap. Last week was a humdinger, stinking piles of the rotten stuff rained down on us.

You see last week involved much crying on the phone to strangers (I am not a crier and I found this excruciatingly embarrassing – I am cringing as I type), shaking with stress after these phone calls and generally feeling like I was going to break. If you follow me on Twitter, you’ll know what I’m on about and if you replied to one of my tweets – which several of you amazing lovelies did – then all I can say is thank you for putting me back together again.

But actually all the bad turned to good in the end. Because the lesson of last week was that breaking down or cracking up or basically showing  that I am not a totally together automaton who will take everything on the chin does not make you weak.  It can make people take notice. It can make things happen. It stinks that life is like this. But it’s true.

So, here’s the bad that turned to good.

1) On Thursday I decided to phone the hospital where Boo had his diagnostic tests three months ago to ask if there was any news on when we might expect results. They are so busy that it is taking them up to 12 weeks to do the tests that other hospitals are turning around in 5 weeks. I understand they are under-resourced. I wasn’t angry, just ground down and looking for information.

Oddly, unlike my own hospital, someone phoned me back within 30 minutes. But what she said really shocked me. Not all of the results were back, but the lumbar puncture, 3/4 of the genetic tests and MRI results were sent to our hospital 7 weeks ago. 7 weeks ago. The person I spoke to was horrified we hadn’t been told.

So I phoned my hospital to be told that the consultant’s secretary wasn’t in until late the following week and results aren’t given on the phone, so a message would be left for the secretary to book us an appointment to get the results in the next month. I burst into tears and ask if I could speak to the consultant in question. I was told he wasn’t in but he wouldn’t talk to me on the phone anyway.

The words poured out of me like a torrent. I started by saying that I knew this wasn’t her fault, but I really needed her help. Couldn’t she see that it was immoral to withhold information about my son from me. I asked if she could understand how hard it was to be waiting every day for the post to come to find out if your son only has quadriplegic cerebral palsy (best case scenario) or a genetic or metabolic disorder that could kill him. How knowledge was power and withholding it was an abuse of power. I then asked if one of Boo’s other two consultants, who I knew would have been copied into the report, would phone me. She said she felt sorry for me and she would try to get someone to speak to me.

I don’t want people to feel sorry for me. I want systems to work. For people to do their job.

An hour later another of Boo’s consultants rang. She said she couldn’t locate Boo’s file (this happens at least twice a month) so couldn’t say if the results had been lost in the post or not (the only explanation in her mind for why we hadn’t been told about the results before now). She had asked the hospital to fax them.

And, so far so good. Yes, there’s brain damage but nothing we didn’t already know about or isn’t consistent with the illness he contracted just after his premature birth. No seizure activity. All genetic tests so far and LP normal. Of course, the ones that are outstanding could still threaten something bad, but only the very rare things are left now and that is unlikely.

This is good news. I still don’t know why we weren’t told. Whether the report was lost in the post (we have been told this about two separate matters before – one an internal post issue) or whether we just weren’t informed, I don’t know. But I’m glad I chased this up. I’m glad we know what we know.

But this meant I already felt bruised and battered going into the ring for a second time last week…

2) OT. By rights, Boo should have been under OT for about 8 months now. He has been top of the ‘urgent’ OT waiting list (urgent because he is at high risk of scoliosis and because his Dad and I are starting to get back injuries) for 3 months. Here we have a Social Services OT for equipment for home and one at the hospital who does equipment for on the go, nursery, school etc. The two are apparently arguing the toss about who should help Boo in these different ‘settings’ because he is under 2. But I have managed to source a seat for home myself (no idea if it is therapeutically the best thing for Boo but it’s better than what we had before). Nursery urgently need something too. Let me be clear, if this isn’t sorted we have been told Boo will have irreversible spinal problems.

All of the consultant’s and the physio’s attempts to contact the hospital OT in the last 3 months have been ignored. The 6 phone calls I have made in the last 3 months have been ignored. So at the physio’s urging I emailed and wrote a hard copy letter to the Customer Services Manager at our local healthcare provider to complain officially. The next day I got an email (although this seems merely to have been a coincidence) from the Senior Paediatric OT saying she would call me with an update the next day. The next day the phone rang and I was told she had no idea when anyone could see Boo as there wasn’t a single appointment for months and I should write a letter to complain.

I pointed out I already had complained and I broke down. Through my sobs I pointed out the prognosis we’d been given if Boo didn’t have the right equipment. I pointed out I would go out and buy anything he needed myself if I had to, but I needed their professional advice to get the right thing. As I felt my heart beating out of my chest, I said, without thinking about it much and calmly, that if Boo did develop spinal problems as a result of all this, I would be seeking legal advice. She said she’d make a note of that. She asked me to pass on the complaint I’d sent. It contained a litany of complaints about her. I felt nervous, but knew the contents were 100 per cent truthful so said I would.

I put the phone down and felt like I was going to collapse. You see it wasn’t just one phone call that made me feel upset and angry. We are talking about nearly 18 months of cock-ups and battles. 18 months of people not following protocols and jeopardizing Boo’s health (some of which have already had long term implications); of losing reports, files and other important information; of being put on the wrong (non-urgent) waiting lists; of being jumped in the queue by people who we are told ‘make more of a fuss with far less reason to’; of not having people communicate with you.

I phoned The Grumposaur. He was upset too and said, ‘Tell them I’m a journalist’ (he is, by the way, a freelance, for several magazines and a couple of well-known national newspapers). ‘I don’t know what good it will do’, he said, ‘but tell them. We’ll go to the papers’.

And within an hour I was told that the Senior OT and her line manager had had a chat and that there was an appointment free on Monday afternoon.

We had gone from months for the next available appointment to the next working day in a matter of minutes. In fact, I had a choice of appointments. I should have asked how this was possible. But I was all out of fight. I should have said, if I’d said my partner was a journalist 3 months ago, would Boo be properly supported already? I should have asked what about all the other parents of disabled children who don’t work for the press?

I am ashamed that I didn’t, even if I am so pleased for Boo.

But I am not giving up. Partly because we have so many other battles still to fight, like the one for advice on home equipment that I am about to pursue when I finish this blog post. Being Boo’s advocate has become a part-time job lately, but it is my job to do it and even though I am frankly exhausted and struggling with my other job and my daughter and just getting to the end of each day sometimes, I will keep going.

This is a promise, Boo. But I promise also that I am not going to be content with being pleased for ourselves when things do finally work out. Every disabled child deserves an advocate and systemic failures need to be flagged and people given an opportunity to deal with them.

I am still thinking about how best to pursue this (although I hope and expect this blog to be a part of whatever I do) and I need to think about how much energy I can devote to this at the moment when things are especially difficult. But if I can help other children and parents who are going through their own particular nightmare with local services then I will. I have never been more motivated to do anything in my life.

Watch this space.

Da-dah!

It’s been a hectic week. Lots of appointments, lots of work, writing letters of complaint to our PCT, lots more appointments, lots more work, and writing another letter of complaint. In the midst of all this, catching my breath is sometimes a real act of will. These are the weeks when it’s hardest to see the word for the trees, to see the real progress that Boo is making.

But it is there. It is. Take his arm and hand function, for instance. I am fixated upon Boo sitting independently. I cannot wait (what am I saying, I’ve been waiting nearly a year) for him to do this. It will make such a difference: to his perception of the world, to his independence, to how others perceive him, and to my breaking back. But he’s still not quite there. He’s been getting closer for ages and it’s so frustrating in these (I hope) final stages. When I was expressing this frustration to his physio yesterday she helped me see things differently: ‘Well you know why he’s still not there yet, don’t you? It’s because his hand function has improved so dramatically. Sitting and moving his arms is tough for him. If he were sitting independently now, he’d likely be propping using the stiffness in his arms and unable to use his hands. Much better this way round.’ Indeed. Of course, she’s right.

But there is one glimmer of progress that even I can see this week. Actually, it’s been developing for a few weeks, but I’ve been too nervous to blog about it in case I’m wrong or jinx it somehow. This week I feel confident enough that I am not deluding myself.

I think Boo is starting to try to say things.

At his age (17 months actual, 14.5 corrected) Sissyboo was talking in sentences. (How many times have I wrote variations on that sentence since starting this blog?) I know she was ahead of the game, so I haven’t been too worried about Boo’s speech. His developmental consultant wasn’t either, but referred us to speech and language because his brain damage and seizures mean he is high risk for cognitive delay and problems and there is a good chance of minimising the effects of these with early intervention. (8 months on we are third on the ‘urgent’ SALT waiting list!) The Grumposaur has been much more worried about Boo’s speech than me. I figure if Boo can understand us, we are onto something good. And although sometimes I worry I’m deluding myself, Boo clearly knows his name, all of his family member’s names, the names of his keyworkers at nursery and evidently understands words including ‘milk’, ‘lunch’, ‘bath’, ‘no’ (although he clearly thinks it’s a negotiable term) and various others.

But what has slightly worried me is that Boo hasn’t gone through that ba-ba-ba-ba babbling stage babies do from 6 months onwards. He vocalises. A lot. And has lots of vowel sounds (oh, ooh, ah etc). And I never feel like I’m in much doubt as to what he wants. But no babbling.

Until the last few weeks that is. Now we have a range of consonant sounds too. He makes a sound which remotely resembles his sister’s name, and seems to say ‘hiya’ from time to time. We really weren’t sure whether we were hearing what we wanted to and making a mountain out of a mole-hill. And then he started with ‘da-da’. It sometimes comes out ‘a-da’ or ‘and-a’ but we think it’s ‘da-da’. He usually says it when his dad’s not there. And he will copy me (not a hundred per cent reliably but pretty reliably) when I make the sound to him. His voice, like his temperament, is soft, gentle yet excitable.

When he was lying there in that incubator last April and May and I thought about our future, I didn’t usually imagine him walking or crawling (the stuff of some of my most vivid and sometimes distressing dreams now). No: I imagined a toddler him snuggled up against me on the sofa, looking at pictures of him in the NICU and me talking to him about how amazing he was and how far he’d come. And then I imagined him talking back to me. Asking questions because he couldn’t remember any of it.

Like my son, I don’t want to speak too soon, but I have a little fluttery feeling in my stomach telling me that this dream might actually come true. And it is music to my ears.

a4641-smallsteps