Tag Archives: Good News Friday

Good News Friday #46

Well I’m a bit late with Good News Friday this week, but it’s half term, so things can slide a bit, right?

And half term is a big part of my good news this week. School holidays involve some juggling in Boo Land, given that The Grumposaur and I both work. But we managed, through some creative tag-team parenting. My own contribution was to take a couple of days off. Boo, Sissyboo and I spent a great day together on Thursday, part of which was spent in a lovely, if overcrowded, soft play centre. They had some good facilities for non-walkers there and run special needs sessions we might return for, but on this day the older kids who couldn’t read the signs saying they weren’t to go in the little ones’ area (and whose parents didnt seem to care) piled in regardless and trampled on those who couldn’t trample themselves. But it gave us lots of time to catch up with a good friend and her toddler and read stories while Sissyboo went crazy with her pal. And on Monday I had an all-too-rare Mummy and Sissyboo day at the seaside, which was just lovely.

The fact we were able to do these things owed themselves to the very best good news this week. I am having to restrain myself from using caps here. We had no appointments. No appointments! The last time this happened was for a week at Christmas (35 appointments ago) and it’s truly liberating. We’re back to 3 next week and ready for action following the break.

Lastly, I had some lovely blogging news. I have been nominated in 4 categories (Best Baby Blog, Best Blog Writer, Best New Blog and Blog of the Year) in the Mad Blog Awards. I am gobsmacked and so grateful to anyone who has voted for Premmeditations. This is a tiny blog, written on a phone with Boo asleep on my lap (like this one) or under the duvet at midnight, and I am a rubbish blogger (no pics, inattentive to SEO, few techie skills). I will eat my hat if I make it to the next stage in any category. But I love writing this blog and being nominated has made me one happy lady. Thank you.

OK, over to you and your good news. Go on share. I dare you!

Good News Fridays #43-45

Talk about playing catch up. Things have been absolutely relentless here in the past few weeks. We have had lots of appointments for Boo. The bad weather has caused traffic chaos on my route to work, which means my 75 minute each way commute two days a week has been taking 3 hours a trip. I have been working very late many nights as a consequence. I may have lost my sense of humour. I haven’t blogged as much as normal. None of this feels right. It certainly isn’t sustainable long term.

Time to breathe. Time to try to catch up with myself. Time for a belated three-for-the-price-of-one Good News Friday. Because there has been lots of good news amid the madness. And if I don’t write it down, you know what? I’ll forget it. So here are just a few of the better things that have happened in the last few weeks.

1) Equipment: I was amazed. I’ve blogged and tweeted about our difficulties with wheelchair services before. The service is terribly under-resourced and there are problems with communication within our PCT. There are also some personnel issues that means some patients and their parents are not treated as compassionately or even just as decently as they might be. I burst into tears after our previous appointment to get Boo assessed for an adapted buggy. I don’t think we were spoken to with dignity and I had our physio there to witness that. I went home. I cried a bit and waited for the next appointment, which was promised to take place within 6 weeks. We had already waited 8 months by that point, so what was another month and a half? Except it wasn’t, of course. It was another 3 months.

In the meantime, I was sent a customer service questionnaire. In some ways, I am sort-of OK with the idea that we are customers of the NHS. But my child is also a patient, and above all, he is a child. He certainly is not a ‘case’, a phrase which is often used to describe him and which makes me scream in anger and pain inside. In this particular instance, we can’t go elsewhere for the NHS’s products or for their advice. There is no market for us to trade in and find the best deals. The language of consumerism just isn’t right then, and often, in my experience, it gets in the way of patient care. I said as much as it related to Boo’s case (albeit anonymously) on the questionnaire form I was sent. I read it through the day after filling it in to make sure what I was saying was OK and not unfair. I sent it off. I think they worked out who it was from. Two days later our overdue appointment came through. People were nice to us. They treated Boo like a little boy, not a problem.

And here’s the news. An adapted buggy has been ordered! It may take a few months, and sourcing accessories is time-consuming and expensive (£400 for a rainhood!), but we are pleased and grateful. This will really improve his quality of life and ours as a family.

2) Speech and language: We are getting some new sounds here: ‘en’ and the odd ‘m, m, m, m. m’ are coming. I almost don’t dare hope that this means I may repeatedly hear ‘Mummy’ or ‘Momma’ one day. I can’t quite let myself believe what I think has actually happened already: that he has said ‘Mom’ a few times in the last few days. I’ll wait and see. Things come and go in Boo Land. When I’m sure though, you’ll hear about it, don’t worry about that.

3) One amazing sister: Before we left for our last speech and language appointment, Sissyboo asked me if Boo’s therapist was pleased with all the sounds her little brother was making. I didn’t know how much of the truth to tell her. I opted (as I normally do) for the truth carefully packaged. I told her that Boo was a bit shy and hadn’t shown off as much as he did at home, so it was hard for his therapist to see what we knew to be true. That Boo was trying hard to speak. Sissyboo looked puzzled and then ran off to find a piece of paper and a pencil. And then she wrote down every sound she has heard Boo make repeatedly, asking me to correct spellings where necessary. She folded it up and asked me to take it to the next SALT appointment as proof of her brother’s achievements. With misty eyes, I did. And his therapist copied it for her files. I haven’t seen that latest SALT report yet, but our physio has, and she said it was so much more positive than all that have gone before. I am so proud of Sissyboo, the best big sister and advocate Boo could have.

4) Running: My training is still not as frequent as I’d like, but I have managed 6 runs in the last three weeks. Only 3 miles at a time, but it’s a start. I will do that half marathon. I will get fit again. And in the process, I might just get that bit of headspace I so badly need and miss so much.

5) Blogging: Things have been quieter than I’d like on the blogging front, but I have had some lovely blog-related things happen. For example, I wrote my first ever guest post for my blogging and life heroine Jenny over at Edpsire about musical play a couple of weeks ago. If you haven’t read it, you can find it here, and I’d love to know what you think. It gives you quite a good window into play Boo style!

Also on the blogging front, I was thrilled to be featured on Vevivos’s Newbie Showcase last week and want to thank all the lovely folks who visited the blog and started to follow me because of it.

And finally, I had a phone conversation with the simply fabulous Kylie of Not Even a Bag of Sugar. It was like talking to an old friend, even though she didn’t know my family’s real names! And I hope it’s the first of many conversations. The very best part of blogging is connecting with other people. And I am fortunate enough to have met (if only virtually) some amazing individuals over the past 10 months.

OK, now over to you. I hope you have some good news you’d like to share below in the comments box. I love to hear from you.

Good News Friday #41: On a roll

It’s been a soggy, busy and quite relentless week this week. I’ve really struggled to get into the new year routine (why it’s the middle of January, for crying out loud?) and I’m sad about leaving some things behind, particularly the absence of Homestart in our lives (more about that next week) and having to work in a different pattern that means I’m missing Sissyboo a lot. Boo’s sleep has been a bit erratic, which doesn’t make things easier, but it has been so much worse and I am filling in a sleep survey for Cerebra diligently and optimistically so they can offer us some targeted advice via their amazing sleep service.

Amid all the hustle and bustle, it’s often hard to take stock, but there have been a catalogue of small things this week that Boo has done that have made me smile. Each and every one is tiny, but the bigger picture that these inchstones are starting to build up is looking rosier all the time. So, here’s my good news this week, which I’m linking up to Jane over at Ethan’s Escapades, Small Steps Amazing Achievements. Because, frankly, I think they are pretty amazing.

1. White noise. We have started using a white noise machine in Boo’s bedroom in the past couple of weeks. It hasn’t been a miracle cure, but it is certainly helping his sleep a great deal and it’s frankly the best £19.99 I have ever spent. Boo’s preferred white noise of choice is ‘woodlands’ (chirping birds and all that – God, I hope this doesn’t mean he’ll want to go camping one day). It makes him a bit more calm as we try the sometimes seemingly endless process of settling him, but once he’s asleep, it seems to help him block out other sounds and stay asleep for longer stretches.

2. The other white noise. I realised earlier in the week, that I like white noise, too. I usually have the radio on while I work. I listen to Radio 3 (I am only 37, honest) but it helps me block out other audible distractions and get more done. I also realised that the problem with embracing white noise in your life is that sometimes you don’t really hear the things that matter. Like Boo’s speech. I am so used to his incessant babble, the ‘eggs’, ‘ugs’, ‘da-das’ and so on that I hadn’t noticed new sounds until I stopped to listen. Just this week we have ‘en’ and ‘Nan-Nan’ (cue crying from my Mum when I see her later today, I guarantee) and then yesterday ‘wuh-wuh’. I swear I heard ‘woof’ three times this morning, so maybe our 3 weeks of doing animal noises in the mirror while Boo laughed at us is working. There is also a rumour, spread by Sissyboo, The Grumposaur and my sister that ‘Mum’ has been heard. I haven’t heard it myself, but I am desperate to believe it.

3. Steps in the right direction. Boo loves to stand, but can’t do so unaided because of his wibbly trunk. He used to like trying to make little steps too, if you held him tightly enough under his armpits. But this was never easy for him. His leg tone meant his legs scissored a little and lifting his feet off the ground was tough. Then he got Piedro boots which are pretty darn heavy, if completely amazing. They stopped him standing on tip-toe and helped stabilise his ankles and hips. But they also made him lose interest in lifting his feet off the ground completely. That was months ago. And then earlier in the week I was supporting him in standing when his Dad came home from work. And what did he do? He started doing voluntary steps, one by one, left, right, left to get to him. Neither of us could believe it, so we made him do it again. He did. It was obviously tiring for him, so we stopped then, even though I think he would have kept going. We hoped he would do a repeat performance at conductive education this week, but no. Have to remember he’s not a performing seal. All in his own good time, Mrboosmum. All in his own good time.

4. Rolling. OK. You’ll know, if you read this blog regularly that we have been trying to teach Boo to roll from when he was 3 months old (corrected age). He is now 19 months corrected and we have a 3/4 roll. If positioned on his side, he can roll to his front. On his front he can (but doesn’t always want to) roll to his back. But back to side is proving elusive. But then Boo developed an obsession with pulling off his nappy before bath time (he likes pulling off his socks too). I have to bath him and his sister separately now, because his bath seat is so huge no one else could fit in the bath with him in it. To be frank, the bath seat barely fits in the bathroom. So I normally strip him down to his nappy while getting his sister ready, she jumps in and he watches and we blow bubbles until it’s his turn. But the other day, after I’d briefly left the room to check the water temperature, with Boo on the bed, head on a pillow (hang-up from the reflux days), and safe in the knowledge he couldn’t go anywhere, I came back in to see him doing a mini sit-up, trying to reach down to his nappy. And then he grinned, and twisted and used his head to get enough rotation to pull his leg up and over and roll onto his tummy. Much hilarity and clapping ensued from me and Sissyboo, despite this not being the most elegant of moves and he repeated it a few times before collapsing into his trademark fit of giggles.

Now this doesn’t mean he can roll yet. He certainly couldn’t have done this without the advantage of head height or the motivation of pulling his nappy off (this is not a move he’s ready to replicate yet with clothes on) but it’s a start. And when the door is open a crack, we just keep nudging it open bit by bit until one day, we hope, we can fling it wide open.

That’s the Boos’ way. Because to be honest, there is no other.

OK, that’s our good news and Boo’s achievements. I hope you have lots of good news to share too. Do get in touch. We love to hear from you.

a4641-smallsteps

Good News Friday #34, #35 and #36

Never mind Bad Santa, I have be a bad blogger recently. Good News Friday has been neglected again. So here’s another 3-in-1. How Christmasy!

It’s not that there hasn’t been good news, but we’ve had to wade through a bit of treacle to get to it and by the end of the week, my energy levels have been zapped and I’ve let things go. But we’re still standing and things are on the up, so here’s the edited highlights of our past three weeks:

Breathing sound

The main culprit for no GNFs for the past few weeks was Boo getting ill. We don’t know if it was RSV again (not much point in testing really) or whether a virus agitated the bronchial hypersensitivity that is the legacy of the RSV and bronchiolitis he caught last year while in hospital for his infantile spasms. Whatever it was, it made him rasp like something out of Dr Who and frightened the heck out of me. We were on permanent, blue-lip, A and E run alert but, mercifully, that didn’t happen. A course of steroids, an emergency inhaler and one he will now have to take daily for the foreseeable future did the trick and he is breathing beautifully again. He is sleeping better (2 nights slept through in the past week, so finger crossed) so I feel a bit more human. Thank goodness we got off so lightly!

Sitting pretty

A few weeks ago, I posted a pic and few words about Boo’s Jenx Bee seat. It is a revelation, I tell you. We now have somewhere where he can sit posturally supported and safely. He had totally outgrown his Cushi Tush by the time we got it and we were getting very worried about scoliosis. Hopefully, this will stop it. I can put him in it and know he’s not going to throw himself back and bang his head or tip to the side (though he is squidgier – that’s a medical term, OK? – on his right side than his left and leans just a little bit sometimes even in this seat).

That said – even if we ignored the OT’s repeated warnings that we are never to leave him alone in it for a second, so don’t think of suing them if we do and he has an accident – we can’t leave him to play independently in it. You see, Boo likes to play his own games but with adults at his beck and call. The yellow and black edging on the play tray isn’t enough to stop toys rolling off and despite the wonders of Dycem, it doesn’t help all that much to keep things in place as Boo tries to eat it. So he’ll play for a bit and then he’ll chuck his toys on the floor, flash you an innocent ‘Moi? Sorry‘ face and wait for you to pick them all up and then the game starts again.

The new news on the seat front is that a second has now arrived and been set up at nursery and we can’t wait to see how it revolutionises things for him there. One of the brilliant things about the seat is that it is fully height adjustable, so it can be as high as our dining room table or as low as the nursery tables in the toddler room, so he can sit at eye-level with his little friends. I can’t wait to see him in it with them at his Christmas party tea with them next week.

And then there’s the sitting that doesn’t happen in the seat. This is something I am nervous about blogging about. I have a real fear of jinxing things, which is odd, as I was never superstitious before having Boo. I suppose it’s a survival mechanism. I don’t want to get too excited about anything because (and I say this without a shred of self-pity) every time I have in the past 20 months, it has come back to bite me.

But, with my cautious hat on. I think Boo’s sitting balance is getting better. He is propping well and saving himself when he topples more reliably. OK, he can’t sit straight-legged. We have to eliminate his high hamstring tone by having him cross-legged or box sitting, but if we do, he can sit with minimal support for a long time and play. With no support, he can manage a few seconds, sometimes longer.

It is a start. Things might deteriorate with the next growth spurt. I won’t allow myself to get too excited. But I can’t help but be a bit excited. That in this area things are moving in the right direction. That he might, one day, sit independently. Please, let this happen…

Sissyboo 

I can’t leave off without writing about the fabulous, nearly-exploding-with-pre-Christmas excitement Sissyboo and her wonderful sense of fun. I blogged about the amazing way that she has got through these past few difficult months this week and if you haven’t read it yet, you can do so here. Today I am off to see her school nativity (she’s a centurian) and then to her end-of-term ballet and modern dance shows. I couldn’t be prouder. Boo is one lucky boy to have her in his corner.

Christmas

And some of her enthusiasm is rubbing off on me. I wrote a few weeks ago about how I wasn’t looking forward to Christmas at all, and I am still very up-and-down about it (some weird PTSD-like fear of a repeat of last Christmas and the diagnoses and hospitalisations that ensued) but I am facing-up to Christmas. I’ve got almost all of my presents, written most of our cards and put the decs up. I made paperchains for an hour with Sissyboo yesterday and felt pretty festive when I took her ice-skating last weekend.

I’m starting to allow myself to think that maybe, just maybe it will be OK this time. I hope so.

OK, so over to you. Please, please, please, share your good news below or on Twitter or the blog’s Facebook page. I love to hear from you.

Good News Friday #31 and #32

Yes, Good News Friday was overlooked last week. Blame Katie Price. I was so deeply upset by her ill-judged interview with Radio 5 in which she condemned many parents of disabled children as too ‘lazy’ to access the resources they needed, that when Hayley at Downs Side Up set up a linky, well, I had to address that rather than focus on good news.

But there has been some. Lots. So much, in fact, that this going to be an edited highlights and I will flesh out some of the other stuff (like what Boo’s been up to in conductive education) for other posts next week.

Sissyboo

My fabulous no-so-little girl turned 6 this week. It’s been a week of celebrations, with presents and a family tea with just us four Boos on Wednesday, veggie hotdogs and cheesecake (not all at once, you understand) and a party with a few school friends tomorrow and grandparents and the little Boo’s favourite female other than Mummy, my sister. She really is in a good place at the moment in terms of Boo and the way she wanted to share him in all her birthday fun (getting him to help unwrap presents and blow out the candles – two things that are very difficult for him), well, let’s just say it made my day.

Boo

Well, I leave you hanging on what’s going on with Boo at conductive education. One for Small Steps Amazing Achievements next week, I think. But things are slowly coming together with equipment. His standing frame unexpectedly arrived about an hour ago. And after nearly breaking my back to get it into the kitchen, it’s all ready to set up. Even more exciting, his chair arrives next Tuesday and after many months, our wheelchair services referral came through for him to be assessed for an adapted buggy. All of these things will greatly improve his life and ability to be included in games, meals and things most of take for granted. It has been a real battle, but it’s coming together. 

The blog

OK, so first a post of mine in support of Home-Start’s fabulous Snowflake Appeal got put on the Good Housekeeping website, and tweeted about by Kirstie Allsop. Then I won a blogging competition! I am still gobsmacked about it. I am very proud to be a member of the Mum Network Trusted Bloggers Club and a few weeks ago I entered an autumn carnival on the theme of ‘The Juggle of Modern Motherhood’, where I wrote about a day in my life. It was an entirely real day. The carnival had some amazing entries and the fact I won (and won a ticket to Britmums Live) is just astonishing to me. Now I just have to work out how being a secret/anonymous blogger works with attending a blogging conference. Answers on a postcard please.

World Prematurity Day

The big news this week is that it’s World Prematurity Day on Sunday. This time last year, I was too much in the thick of prematurity to think about contributing to the day, but this year, I have written a post on Bliss’s wonderful theme of The Impossible Hug and a post where I try and explain what prematurity means to me. called Why Prematurity is Like The Matrix. I’m also very much looking forward to attending a reception highlighting research into prematurity hosted by Tommy’s and Bounty at the House of Commons on Monday. I’ll let you know how it goes. Now, do I have a frock that still fits…

OK, over to you. I’d love to hear your good news this week. 

And please, this weekend, do spare a thought or any pennies you have for any of the leading charities working to prevent pre-term birth or fund special care for some of the 15 million children born too soon across the world every year.

 

 

When Will There Be Good News? Good News Friday #28 and#29

No, this isn’t a how much I love Kate Atkinson’s novels post. Although I do. Nor is it a how much I love Jason Isaacs post. Although I do.

No, this is a ‘I-so-sorry-I-haven’t-managed-good-news-Friday-for-a-few-weeks-(again)’ post. It’s not that I haven’t had good news to report, although I have been having a bit of trouble seeing it, admittedly. It’s just that I keep running out of time to blog about it. Blogging is always something that happens in the margins of my life. And over the past few weeks (diagnosis, regressions, too much work yada, yada, yada) life has been squeezing those margins harder than ever and the blog is losing out.

So, I’ve been thinking very hard about whether to keep Good News Friday going. After all, this is a deadline I set myself, not one someone else (someone who might be paying me) has set me. So why pressure myself? I have enough real deadlines to meet.

Hmmm. Well I’ve thought long and hard about it, and although I know that the four lovely people who read this blog probably won’t care, I think I do.

You see, Good News Friday is important to me. It’s not the content, really, that matters. It’s more of symbolic value, if that doesn’t sound pretentious. Good News Friday has been a sanity saver in recent months, allowing me to see things differently in weeks when, believe me, that’s no mean feat.

But more than that, Good News Friday is kind of what I think Premmeditations and my life in general is about. Yes, life is hard sometimes. But my life, our lives, are not a bad news story. The life of the Boos is a good one. And part of the reason I know how good we have it, is because I have had glimpses of how bad it could be and how bad it is for many other people much or even all of the time.

So I may be out of kilter. This may be a Good News Friday on a Sunday evening (when I know no one reads blogs), but we don’t do things the conventional way here in Boo Land. And GNF is here to stay.

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.

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!

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.

Good News Friday #21

Where did that week go? September is back and time has sped up. Again. It’s quite alarming. But it’s been a really good week and not as difficult to see the wood for the trees as it sometimes is. So here’s the woody good news from Boo Land this week.

 
1) Back to school. Now don’t get me wrong. I miss having Sissyboo around. I have enjoyed the summer holidays, despite having to work through much of it. But she was ready to go back. She wanted to go back. Despite being a parent who has never imposed a particular routine (except around meal times and bed time) on my kids, they both want and need them. Sissyboo was ready for bells telling her the time and certain activities at certain times of the day. She was really excited about being a big girl in year 1 (where did the time go?). 
 
Me? Well I didn’t bother to think if I was emotionally ready for the new year because I was too bloomin busy reading the 1000 emails from school about which days were PE days, when show and tell was, how to select an appropriate toy for this term’s learning project, learning targets … Oh and the labels. The bloody labels that I carefully unpicked from last year’s uniform and sewed into this. I got there eventually and we were ready. But I did get slightly misty eyed on Wednesday when I dropped her off. Her? Not so much as a backwards glance. That must be good news. She’s happy.
 
2) Boo has been assessed for the various bits he needs to fit his Breezi chair and even just with all the tightening and finessing the lovely rep, Les, did, Boo is able to sit well in it, even feeding himself sweetcorn rings. Once the chest straps in there’ll be be no stopping him! 
 
3) Conductive Education is a goer. We feel so lucky to have been offered a place for Boo at a Conductive Education centre of excellence for 3 hours a week. We visited the centre on Thursday and were really impressed by the friendliness and commitment of all the people we met and the facility itself, which is fabulous. While we talked to the head of early years, a teacher played with Boo doing the kind of learning through play activities we will be working on in the sessions. He had a ball and giggled incessantly for an hour and a half! We start in a couple of weeks. And I’m very excited!
 
4) And finally, and I know I’ve blogged about it already but I don’t very often get to do milestone boasts, so do forgive me, Boo can now roll from front to back. It’s so thrilling to see him do it, although he is now more frustrated than ever that he can’t roll back to front. Some day, Boo, some day!
 
Right: now your turn. I hope you have some good news this week, too. Do let us know via the comments box below. We LOVE to hear from you!