Goodbye Rug

Recently I have been terrible at blogging, leaving long gaps between posts that I need to write for my sanity. So before I start this, here is some proof we have been at least getting on with life in between:

Ikea is to Wriggles a gigantic dolls house. A whole day can be spent climbing on or off sofas with peculiar names and hiding inside show wardrobes. All in all, a marvellously cheap day out. Actual shopping with her is a nightmare still but if a stuffed mouse can be located somewhere it makes is mildly more manageable...

One big change we have made at home in finally taking the side of the cotbed off. Until recently, Wriggles still feeding tube feeding through the night and would get so tangled with the tubing that the safest thing was to thread the tube through cot bars. However once this wasn't necessary (for now), I grabbed the screwdriver and I must say it feels great to move her into a more age appropriate bed. So many things are dictated by her abilities or disabilites that normal things like a big girl bed feels just brilliant.

Wriggles LOVES water. Now she can independantly stand and do some "wobbling" (walking to you and me. She picked this term; I am not that cruel although it sure is accurate), puddles are hers for the taking. She loves stamping her feel if you her holds or hips to keep her upright. And of course, the British weather is happy to provide!

Wriggles is still a bit of a titch so can still fit comfortably on her (cheap substitute) Smart Trike. She can't always get her legs to stay on the pedals and can't pedal herself, but nevertheless, just staying upright on it is brilliant when you have cerebral palsy as your core strength is weak. Wriggles often slumps and folds like a concertina when she tires, but she managed nearly a whole mile walk of me pushing her on her trike, holding on to the handlebars and staying upright sitting on the seat herself. Even a few months ago there is no way she would have managed this distance, so it was a great reminder about the "invisible" progress that children make.  

Then this week during half term we had our 6 monthly development review. I knew it was going to be one of "those" meetings that tax the brain and merit large bottles of wine, as a few weeks ago we had our TAC (Team Around Child, ie. multidisciplinary meeting) during which several issues were flagged up by nursery which are consistent across the board and in front of the paediatrician our SALT finally admitted she can't always make head nor tail of Wriggles' speech despite telling everyone it was all 'fine with no concerns' for months. There have been things which I have put down to being 'Wriggles-isms' for ages but as she gets older they are beginning to stand out more. On the whole she is a delightful child, but there is something I can't always put my finger on that stands out. Things very much have to be on her terms beyond the remit of being stubborn or a 3 year old and she acts as if children don't exist, despite if they are standing next to her calling her name. She still hand-flaps when excited and has language issues outstanding. If you put a gun to my head, I probably couldn't tell you yet the differences or significant things which make me thing that our journey isn't over yet within the realm of SEN, but there is something. 

And it turns out our paed agrees. In fact, he was quite upfront and told me about 10 minutes in that he was mentally assessing her for austistic spectrum disorders before I had even mentioned some of my concerns, those of nursery and some of her 'quirks'. She doesn't yet fit an obvious profile but shares quite a few ASD traits. Our paed has long said she comes across unusually-there are no clear explanations for lots of her past. Her clinical notes never match up with her presentation in real life and the only concrete thing we have to fall back on for anything is prematurity. At the TAC, our paed stated that we shouldn't be surprised if there are further diagnoses along the way which came as no surprise. At that time though, I hadn't been thinking ASD might be one. I have vaguely read things in the past about it, but discounted it as Wriggles doesn't obviously match the triad of impairments. Then I was talking to somewhat about some of her unusual patterns of speech and they mentioned echolalia. Several Dr Google hits later, and someone could have been writing about my child specifically. What I also noticed was that ASD often came up in conjunction with the hits and read a bit more about atypical presentation and within girls and begun to make me think more carefully. In hindsight I am glad I read a bit as it made it much less of a shock when our paediatrician suggested it being a possibility we couldn't rule out at this stage.

The thing which complicates things and may yet be our diagnosis is good old prematurity. Whilst many babies do escape relatively unscathed, premature birth and the sensory overload that comes outside the womb can cause brains to develop unusual pathways that will go on to process information differently which will not be immediately obvious. The upshot is that many display strong traits linked with neurodevelopmental disorders, often across many, but not fully fit the profile traditionally of any of them. They are still not 'neurotypical' but don't have a 'name' to explain it away. It can be pervasive or resolve depending on the extent and individual child. Wriggles has already had an MRI which reads as normal, which as our paed says, really tells us nothing as it can't tell you the tiny pathways which must be affected or simply put she wouldn't have cerebral palsy which she obviously does.

It is all rather complicated and a bit of a muddle: it comes as no surprise, but yet it is always a blow to hear a professional say "there is something else" even when you wholeheartedly agree. Until those black and white words are uttered there is that thread of hope called 'so -called normality' and the idea that maybe, you have just gone neurotic. Obviously to have escaped this conversation until past 3 years old, things are on the mild end for which I am truly grateful. Of course whatever end of any spectrum, Wriggles would still be Wriggles and I would love her with a ferocity and fight for her corner and what I see as her needs whatever. But some days all the mild things stack up and feel overwhelming. Much, I imagine, like how Wriggles' brain probably views the world incoming. Which when I stop and think gives me great sympathy for her and explains a lot. It also makes me feel very tired when I think what we have to achieve yet. Every time I rearrange the metaphorical rug of life under our feet, someone gives it another yank. 

I am going to have to find some metaphorical superglue.

Freedom: proof

Such ordinary pictures, days of nothing special, and yet for my 3 year old each one is a momentous occasion. I took for granted that walking comes naturally to children, babies even, until I had a premature baby who was later diagnosed with spastic cerebral palsy. 

Since the days turned into weeks and then months when allotted milestones came and went, un-met we have done a lot of physio, used gaiters, AFOs, a Kaye walker and a daily muscle relaxant medicine in aid of walking. We have swam, bounced, sung, pleaded over steps and supported, held up and wiped tears when things wobbled. I have cried into my pillow and Wriggles has cried into me (or hit me with a stuffed tiger). But we are getting there. Each step of freedom makes my heart sing louder and if that what it does to me, I can only imagine what it does to an already perfectly confident child like Wriggles, whom quite regularly refers to herself as both "brave" and "clever".

Each step is so hard won: the cruelty of cerebral palsy is that even for those more mildly affected, the tiniest of set backs can prove huge. Each achievement can be crushed by the simplest of things. Growth spurts wreak havoc as muscles and bones grow at different times and rates and the signals in the brain get mixed up. Small viruses sap strength that takes weeks to get back to baseline. In an instant, core strength is halved. Which makes these memories and pictures all the more special. We got there. Wriggles got there.

At the moment, we are still suffering the after effects of Wriggles' recent intensive care admission. She has been out of hospital for two weeks, out of intensive care on sedation for three weeks, but still can only crawl or sit up. Her hard won steps have once again slipped away from her. I know she will win them back again and these weeks of frustration as she yells "I WAAAAAAAAAAAAAALK!" only to fall down because she can't stand up will melt away. It has just been a reminder that the battle is won, but not over. For now.

 

Missing Gaps

Before I jump in with life post-intensive care #2, I'll back track. Wriggles recovered from her tonsillectomy after a tense fortnight of religious administration of Calpol and ibuprofen and by the end of July you would not have been able to tell that weeks ago she had had surgery. Her breathing pattern whilst asleep improved-if anything it unnerved me how quiet she was! I was so used to sleeping next to someone who sounded as if they had tumbled out of the pub after downing their body weight in pints, that to have the serenity of near-silence needed some getting used to. Where as at the turn of the year, I would have to regularly check her colour with a torch in the middle of the night (she had obstructive sleep apnoea caused by the large tonsils and adenoids and a great fear of mine was that she would pause in breathing and just not start again. Her breathing was really quiet noisy and so the moments when she did apnoea were almost deafening in their quietness) I was now prodding her every now and then to check she actually was breathing, such was the change in noise levels! Once we had got through the recommended 10-14 days of rest, there was no stopping her. Especially as we had our first real holiday in the first week of August!

We flew down to the south west coast to spend a week with my parents and godparents in a holiday cottage by the sea. My parents go annually, and have since they met, to a folk festival on the coast and we took full advantage of there being a spare room in a picturesque seaside town with nearby playground! It was wonderful: we spent 7 days surrounded by friends and family, with sunshine, swings and company on our doorsteps. We also got to meet fellow preemie mum and blogger Diary of a Premmy Mum and the delightful Smidge, which was very special to finally meet someone you connect with 'virtually' who knows so much both about your life, but more importantly understands what you have been through and what it means to come out the other side. We slowly made our way back north, but via two more friends to stay with for a few days each that we rarely get to see due to the distance. The last friend we stayed with was one of my closest university friends, now herself a single parent with a beautiful little baby boy and it just rounded off a perfect holiday with someone I adore and who knows all too well the bringing up of a small person alone.

And then, at the end of August and beginning of October, something amazing happened.

Wriggles took her first independent steps. At just shy of 3 years old, she stumbled across to a toy, beaming from ear to ear. I hadn't known she would be able to so soon; I and the physios and doctors had wondered that it might take months or even years longer. But she showed her silly muscles and cerebral palsy just who was boss: her. Not just that, but suddenly she started putting words together, words that just kept tumbling out her mouth. Words I knew were there but for months and months she had been unable to speak and words we couldn't find signing for. And as she let loose the conversational floodgates, with practise her speech began to sound clearer so that other people could understand her too. I always knew she would get there in her own time and I knew it would be very emotional after the pure fight she has had to put up, but it just floored me. To see what she could achieve but above all how pleased she was. You assume they get frustrated, but if they haven't had a skill can they miss it? Judging by her little face every time, she was as happy as I was that she was getting there, if more so. It made the hours of therapy, the tears of heartache and the sleepless nights of anxiety worth it in a second. Of course I would have loved to re-write history and erase the premature birth and magic away the cerebral palsy and development delay, but in this world you can't change the past-but you can make some enormous strides forwards!

Wriggles turned 3 in September: it was bittersweet as usual with sharp memories of the day she was born and the terror of her delivery and subsequent hours not knowing if she were still alive, but fresh with her new skills of walking and talking, it made me proud to bursting point of how far she had come over time and the limitless possibilities she could yet achieve. Disabilities aside, she is a massively stubborn child with a keen streak of independence and knows exactly what she does and does not want, which many a time can cause friction but at the same time can really pay off in making big progress. At the end of the month she started preschool. The idea of preschool had plagued me with so much anxiety, not least because there were a few weeks whereby it appeared that the professionals who support us all appeared to be on completely different pages as to how we would manage preschool and what support may or may not be in place. Luckily it was resolved and after a good bit of prodding, we won funding for a 1:1 support worker for Wriggles. By the time preschool came around, we were both totally ready. The difference in the 10 weeks since we signed the paperwork and when Wriggles' first day was was astounding. I think she would have coped if she hadn't been taking some independent steps and been able to verbally communicate but there is no denying that achieving both those things made the transitional much easier for everyone involved. I wasn't surprised at how easily she settled and familiarised to the new routine and with both excitement and some sadness, accepted just how quickly my little girl who once fitted in my hand, was growing up.

On one hand, I was and am, very excited for this next chapter in our lives as Wriggles is thriving and growing up. And on the other, as silly or selfish as it may sound it just floors me. The last years have been a struggle. There have been some truly special moments and I would not trade any of it as every day has been with Wriggles who has changed my life upside down, but there is no covering up that even on the really good days: life has not been a bed of roses. I hadn't been prepared for parenthood 3 years ago and I was definitely not prepared for single parenthood. When I previously used to think about the future, bringing up a family of one, two or more on my own just did not even get a look in as even an outside possibility. Sometimes though, life has other plans and you either get on with it or you don't. And with some hindsight, it has been non-stop. Hospital admissions, my own mental health battles, health scares, lifestyle changes and the huge unknown that is a child's development when they have problems to contend with...it leaves you running on adrenaline just day to day. Because often if you stop and think, really think about it then you can tip over and fall into a big black hole. But if you keep running, keep savouring those moments of pride, those small steps, those little snippets of ordinary that you treasure for years to come; then that enables the days to keep changing, the world to keep turning and suddenly you get to a point and think, but in a really good way, "how the bloody hell did we get here?". I certainly would not have seen this point when we came home from NICU or even a year ago or less. And that is where I found myself as Wriggles happily settled into preschool and I suddenly could think and open my eyes a little wider. It threw me: for some reason it really rammed home this line we have been straddling, this balance of needs and wants, of what is expected and what happens. Things I haven't allowed myself to think about or miss because I had a very big priority who needed a high level of care all the time. And while that hadn't all just gone away, the world had shifted a bit and the path we have been walking on seems to have gotten wider as there are more possibilities now. As the health and development side of things have became less intense, I find myself floundering a little. I can't wait to enjoy it but a part of me is almost afraid to. Now I can stand and watch Wriggles fly across my vision, giddy with the feeling of being carried by her own two feet, holding herself up tall and proud. It reminds me that that is what I have to keep doing: if anyone can make sure I too put one foot in front of the other and keep going with a smile on my face, it will be her. 

Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?

Tired and Emotional

This week, I prayed for Friday to hurry up.

Not that weekends are generally different to weekends in terms of no extra respite; I've just been done with this week and want a new page, new leaf, new day. Over the past couple of weeks I have been looking into preschools as Wriggles is approaching her 3rd birthday. Once I got over the anxiety of someone else being responsible for her for a few hours a day and the shock of how quick she has grown up, I actually found a setting that I really liked and feel would be really supportive and nurturing for Wriggles. So I put her name down and plop, through the letterbox came confirmation there are two sessions a week for her from late September.

Due to her developmental delay and unpredictable mobility and balance, Wriggles will need support in any setting. Prior to even looking at preschools, I had been reassured she would be funded to have a 1:1 support in a mainstream setting as that is what her needs dictate for her to be thoroughly included and to flourish under. So it was not a nice surprise when I rang up the Early Years team who coordinate support and help with the funding paperwork, to hear they had magically changed their mind. Except Wriggles' needs and development had not magically changed. How about we tried to just 'wing' one session? Not that it was phrased as a question otherwise my answer would have been "how about we, errr, don't?!".

Initially I was too stunned and upset to cobble together some arguments. I spent a few days researching and picking the brains of fellow parents of children with additional needs, friends who were teachers or early years workers and my mother who is a trained SENCO and has been a 1:1 herself in the past to a little boy very similar to Wriggles. Later in the week I rang Early Years back to say I wasn't happy with their 'offer' as I felt it wasn't good enough. Perhaps naively, I thought they were joining our team of professionals to help be Wriggles' advocate, not put spanners in the works and possibly safeguard their own budget. I put my case forward and after a bit of to-ing and fro-ing it was agreed we could apply for 1:1 on both sessions as required and if the funding doesn't come through then she will be deferred until the funding does come through. The parting words from Early Years: "But we'll review again at Christmas for removing support."

She hasn't even started yet and they're talking about removing support?

Not even removing when appropriate?

I must say, it's been an unpleasant kick in the face. We might be back on plan A for the moment, which is a huge relief, but to know that the team we were told was going to work with us, are actively and prematurely contemplating plan B does not make for a relaxing life. I knew anecdotally that it is a sad fact of life, many parents have to fight tooth and nail for their children's welfare but given things have been running relatively smoothly of recent, I had hoped that might not be me. It does not breed trust at all in entrusting my daughter and her needs to other people. Already our paediatrician is recommending one thing only for those in charge of funding to claim he is "overreacting" and out of touch. Last week the majority of the team got together for a TAC (Team Around the Child) meeting which went brilliantly and I left feeling so reassured that finally everyone was on the same page and putting Wriggles first rather than inter-departmental politics, selective listening and budget targets. This partly made the claim from Early Years that support isn't necessary so upsetting-they were there at the meeting and at no point said anything suggesting it or that they disagreed with anything the paediatricans or  physiotherapist said. More than anything, it has heightened a feeling of loneliness that no one else is going to fight for my child like I will. I will fight for what I believe is in her best interests until I am exhausted and content with her provision at any stage; I just wish that there was a more compassionate system in place to actively met a child's needs rather than providing wild goose chases and parents having to argue with someone before they get an answer; particularly if the desired end result was available the whole time.

It has been nearly a year since official diagnosis and the whole business of having to point out the bleeding obvious, that my child is developmentally behind others, yet again takes its toll. It is akin to a neon flashing light screeching DID YOU KNOW SHE HAS CEREBRAL PALSY! Much of the time she is Wriggles, just Wriggles, my beloved Wriggles. But times like this have been a sharp reminder that Wriggles she may be, but a Wriggles with a bumpier path than many. Followed by sharp guilt that we have come as far as we have while others have more complexities to deal with and even less access to services. Life is unfair to too many people in this world and I have a horrible feeling that things become more, not less complicated over time.

Thank goodness for the rewards.

Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Back at last!

Little blog, it has been so long! 

After a long drawn out farce (TWO MONTHS, TalkTalk, TWO MONTHS) with installing a new telephone line in our new house, at long last I am finally connected to the Big Wide World again beyond a decrepit and irrational mobile. Wriggles reached the point where taking a laptop to a café or such with wifi to connect with all things online became not an option. I did try once; I went armed with a Mr Tumble comic, two toy hedgehogs, Quavers AND chocolate buttons, the favourite book of the week and spent a terse ten minutes fishing stuffed animals out my coffee, removing CBeebies stickers off my laptop keys and trying to shield technology from a tsunami of drinks, snacks and the sticky hands of a bored toddler who had climbed onto the arm of a sofa and was balancing precariously. Needless to say I got nothing done.

So we have moved in to our new place and have been quite happy pottering and settling in. Although not hugely busy, we have been up to quite a lot and trying to make the most of the brief snatches of sun as well as  drenching mummy  finding out about puddles during the rest of the time. Wriggles seems to have grown up again behind my back. She looks older, less like a typical toddler and more like a pint sized child with a wilful glare. Although she coped well with the move, it does seem to have accelerated her toddlerisms. It turns out I was kidding myself if I thought she had learnt about tantrums before or being a pest. Noise is her forte and she is not afraid to use it, especially if I dare take her shopping in the buggy (otherwise known as a fate worse than death). For someone who cannot yet walk independently she is adamantly averse to spending anything longer than two minutes in said buggy, which is a shame as she has finally put on some weight and at the heady heights of 12.3kg is a bloody great lump.

I will elaborate more but here are some of the things that have happened since the end of March in no particular order:

• physio confirmed that Wriggles will need to start wearing splints (AFOs) for a few hours a day to ensure her dynamic tone doesn't start hampering her range of movement, balance or teach her an incorrect gait pattern (wonky walking to you and me. It has already been noted that she walks a little like John Cleese in Monty Python's Ministry of Silly Walks. Funny now, far less so in the playground). The Piedro boots aren't quite hitting the spot on their own. We're just waiting for the appointment to be measured and fitted for splints. "She can choose her own pattern!" they said cheerfully. I am not sure that will be consolation enough but needs must. No one said things were easy all the time.
• Wriggles has become obsessed with Bagpuss. I admit to gleefully encouraging this as it does beat Baby Jake and other Cbeebies rubbish at times. Her favourite episode is without a doubt the Mouse Mill with the chocolate biscuits, and she asks/demands for "mouse!!!!" or "choc[olate] bi[scuit]" if she claps eyes on my laptop.
• her speech is either finally making some strides or I deserve a degree in translation. We still rely heavily on a mixture of Makaton/BSL signing to decipher sounds, as she can only pronounce either the first syllable or letter but her signing is getting quite clear and she has at least 70 'words' she can use singularly. They aren't all consistent and not all clear, particularly without signing or a context but it has to start somewhere.
• talking of speech, I had to waste several hours of my life throughout April attending a speech and language 'help' group. I am sure those devising it meant well and I truly hope it helped some of the parents attending but I can honestly say I have never felt so patronised, belittled or talked down to by NHS services and I have seen some pretty annoying consultants in my time and had to have a rather humiliating argument in the middle of a ward round in NICU when a consultant questioned my cycle dates and conception date for Wriggles, insinuating I was either fibbing, mad or forgot occasions I may have had sex, in front of a large audience and at a time when I was incredibly fragile, as was she.
• I have had some lovely evenings painting, re-painting and 'upholstering' some rather knackered furniture I own. Thank you Dulux and your 3 tester pots for £1 offer.
• Wriggles has had her first hair cut. I did it in the bath and hated it straight away, although am used to it now. I think it was the shock of seeing her less like a baby and looking more grown up.
• we met a real life baby when my closest friends from university came up for a glorious and memorable weekend, one bringing her 10 month old son. Wriggles was warily fascinated and carried around a photograph of the pair of them after he left and has become very interested with the idea of babies (although does refer anyone under about 5 as a baby). I in turn have also become interested with babies and ever so slightly broody, though this is now wearing off as I contemplate the idea of having two noisebags in the house, not to mention not possessing a man.
• I have ever so slightly started dreaming of trying to re-start non-child related hobbies. Recently we went to a picnic style gig outdoors and I briefly had a turning lindyhopping with a good friend and only fell over once. I danced (badly) all the way through university and it suddenly broke through to me that though I love being Mama I also am beginning to miss being Amy.
• we are officially doing the Blended Diet having confessed to the dieticians who are better than I thought about it. They were very damning on the telephone then turned up with a stack of recipes proclaiming "Shhh! You didn't hear it from us!. Our community nurse advised us to be a bit creative about how long we have in actual fact been experimenting and to let them think it is all their idea. So far, so good. We have also FINALLY added chocolate buttons and Pringles (red flavour only) to Wriggles' oral diet.
• I have my own bedroom back. It feels a little disloyal, but it is minor bliss.
• Wriggles fake-cries to try and get her own way or if I tell her off for being a pest. It can be like living in a very poorly directed pantomime at times. With less sequins.
• I decided to be frivolous and buy Wriggles a pair of spotty Doodles shoes for summer. She calls them her Mr Tumble shoes and definitely prefers them over her Piedro boots. So do I (orthotic benefits notwithstanding). After getting fed up with constantly seeing other toddlers progress so quickly and battling with a newer physio regime of more exercises, a walking frame and seeing on some paperwork Wriggles officially described as 'disabled' I needed something obvious and rooted in so-called normality and it turned out £15 canvas shoes that will probably not last long was it. It felt good. I am acutely aware things could be far more complex but they also at times, wear me down.
• we have found a new music group nearby which Wriggles really likes. This makes me feel less guilty about avoiding toddler groups and dragging my heels about looking at preschools. She has picked up the group routine, language and actions remarkably fast and I am now hoarse at the end of bath times after singing all the songs we have learnt.

Alternative Physio

Between every week to two weeks, we have physio through the NHS for Wriggles' cerebral palsy. We also have a rough program to follow in between times, focusing on leg stretches and some work on the pelvis and core. As well as this traditional physio, I am lucky that despite not being able to walk on her own, Wriggles has cruising skills and loves a sense of danger....making the playground an excellent work out! When the weather is permitting we go often, and it really does help as there is also an incentive for her to do things.

One of the great things about the climbing frame is that it gives her the ability to help walk forwards holding on either side. This is definitely one of her weaker areas as her core is wibbly wobbly. If she could side-step and cruise to get around, she would. Actually, if she could crawl she would but she is slowly figuring out that crawling on ice, snow or mud is not as easy as trying to walk. When going forwards with her hands either side on the bars, she tires easily and walks much slower; you can see the poor sausage working hard! She is now a dab hand at her beloved stairs and pulling herself up, although during the latter her legs often get confused and bend awkwardly. Her balance and spatial awareness also get a good work out and the swings help her sitting which of recent has been a bit more unpredictable as a growth spurt has confused her hamstring muscles which impacted on her posture. 

And above all, the playground is wonderfully enjoyable and doesn't feel like a chore at all! Even if people assume she is far younger, we don't get as many second glances as I hobble around holding her up, or if we do we're having too much fun to notice.

Bright as a Button

Yesterday we had an excellent and slightly rare meeting.

Before Christmas we had a review with SALT (speech and language therapist) who ended it with "I'm not really concerned but....*trots out not one but two further referrals concerning lack of speech*". I was left thinking, jesus woman, just SAY IT-it's alright, I had actually noticed that most two and bit years olds have more than about 10 words on a really good day and thus things weren't running as smoothly as they could! It really frustrates me when people try and sugar coat things before ramming another thing through that just highlights you're in a pickle. I know they do it not to scare you silly and set off  the presence of the almighty (and frequently wrong) Dr Google, but then what actually happens is that you just get a bigger unpleasant shock when surprise, surprise, the next blunt-er professional you see says, "Do you know your child is delayed ...*insert delay shocker here* months?".

So anyway, we were referred to one speech parent & child group and also to the Early Years Support team, who are similar to portage. We are still waiting to the former as there is a waiting list and we had the latter meeting yesterday. It went better than I had hoped. Essentially, it was a play assessment to judge Wriggles' maturity through play and catch a glimpse of what amounts to her learning abilities and to get an idea of her intellectual capacity. Although speech does come into it, it helps to know if you're looking at a child with delay in all areas e.g. immature speech and some cognitive delay or immature speech on it's own. I was fairly confident that Wriggles is more or less on track cognitively and definitely for corrected age; then again I think the sun shines out of her arse so am probably not the best objective judge. 

The meeting was off to a good start when H, the EYS (Early Years Support) worker said Wriggles' reputation had preceded her and she has heard for months from her colleagues who know Wriggles through physio and Splish, Splash, Bounce that Wriggles is simply a sunny delight encased in a mad toddler. Cue first proud mum moment. Together with our SALT, we sat and watched and interacted with Wriggles playing around the room as well as vaguely discussing her history, what else is going on health-wise for her, future plans for nurseries and her communication boundaries. Pretty quickly, H said she felt that there was very little they could do from a referral point of view right now. Wriggles was clearly "as bright as a button" (second proud mum moment) and was demonstrating a good overview of play, both independent and social and seemed to have a good grasp of concepts, problem solving and memory. She did discuss with our SALT, C, about possibly referring us to a group of children with language delay just on single words (definitely us. I will fall over with surprise when Wriggles strings words together) but after the pair of them talked about it, it was decided that although that fits Wriggles' language needs, unlike the rest of the children currently in the group she doesn't have the cognitive delay also, so H felt the group would not push her enough as she needs appropriate input to facilitate speech. 

What this all essentially means, and the main thing that came out the meeting, is that when we come to looking at playgroups, nurseries and school we are looking at going into mainstream establishments. We will stay on EYS books so that when the time comes they can help us pick the most appropriate places and broker any meetings, alongside physio and the community nursing team. Depending on progress, it will need to be liaised to ensure it is a setting compliant with Wriggles' physical needs (which physio would mange, maybe by providing a walker or other mobility aid and possibly some assistance at times) and also a place supportive of Makaton and BSL signing as this still plays a big part in our lives and routine. I had worried that the physical and language delay might hold her back, and in one way it does. I have noticed, in her correct peer group, Wriggles does get left out physically because she hasn't the ability to run off, jump, move around in great strides-she is reliant on someone or something to move her. In a slightly younger group, it is still an issue but less so as slightly younger children don't bat an eyelid about crawling around or having a mum-walker whereas already I have seen 2- and almost 3 year olds 'baby' Wriggles in group situations because she seems at first glance, slightly more babyish in her movements or exchange of communication. But in another way, this meeting affirmed what I hoped to be true, that despite having some extra hurdles to overcome, Wriggles, possibly with some extra support and the right setting, should be able to settle nicely in her peer group and not just cope but thrive. H noted that through play, even though she doesn't have the speech currently, Wriggles demonstrated enough understanding and interest to be more than able to "join in" even in a less vocal capacity. Of course this is very early days, we haven't tried an educational setting yet and there is the whole other issue of needing feeding and a few sensory quirks Wriggles has. But one step at a time.

Because right now, I'm doing a jig on the moon and no-one can spoil it!*

This is possibly the first time we have had a meeting and not come out with another referral or after having another issue flagged up.

This is a great step when professionals note down Wriggles positives as well as problems.

This is one of the first times, if not the first time, I have come out thinking maybe, I am doing something right after all. Maybe I haven't buggered things up for her by either prematurity (thanks a bunch, womb), my own struggles with my mental health or by not being super mum with a play date here, an award winning toddler group there, French lessons, baby yoga, yadda yadda yadda. 

This is a moment I will savour and remember next time some ignoramus says "So, isn't she walking or talking yet? Why?". 

We might not have left behind prematurity or medical needs, but it is so nice to celebrate something for a change with those who oversee her development. And by the way, "nice" doesn't even do it justice. It is EPIC.




*don't you dare. Let me have my minute!

Splish, Splash Bouce

We've all had our grievances and gripes about the NHS. It can get things wrong, from a hopeless lack of GP appointments to a waiting list longer than your arm, my arm and so-and-so-over-there's arm put together for any appointment not deemed urgent. And as Beadzoid wrote this week, it can get things badly wrong. But today, I just wanted to have a little rave because it also can get things right. And when it works, it works really well and makes a difference to the life of normal people. 

This morning, we went to a group arranged by NHS community paediatrics in our area called 'Splish, Splash, Bounce'. I am lucky to live near a big teaching hospital with a huge and greatly respected paediatric department that coordinates community outreach exceptionally well. Today we started an 8-week course of hydrotherapy and rebound treatment (physio on a trampoline). It also has some other umbrella services that run alongside this group and if nothing else, is a brilliant resource of meeting parents in a similar situation. The group is especially for babies and pre-schoolers with additional needs, particularly those with physical disabilities from the milder end of the scale like us to the much more severe end. 

We went last year, and whilst I enjoyed it and Wriggles loved being in the water, I always felt out of place. We hadn't come that near a diagnosis yet and as she was only a year old I had a horrible feeling that maybe I was imaging things and making a drama out of everything, using her prematurity as a shield. Last year other group members all seemed to have "proper" diagnoses and recognised conditions under the belt. They were all more of a toddler age and their parents seemed so more savvy-in hindsight because they had been dealing with this longer. This year, we are in that position and in the year that has elapsed we did get our diagnosis which in part has made things a little easier in that I don't just feel like a mad moaning woman with "a feeling in my bones" that something is amiss. We have found that secret world of multiple therapies, medical assistance and untangled some of the whats, whys and hows. In many ways, I am still very new and naive to this all. I am still at time struggling to accept, to find where we fit in. But this year, I felt much more comfortable and also more aware of things and in turn, more grateful services like this were on offer to us. Last year, a niggling part of paranoid-me thought they think I'm making it up, they're calling my bluff inviting us to special needs groups to see if I crack and suddenly decide nothing is wrong. Now I have researched more thoroughly, read up more, tried to access more things with varying degrees of success and accepted that my child needs some extra help, and I know all too well that services are greatly strained and really, you don't get offers of things that will not be beneficial! The group is number-controlled so the children don't get overwhelmed and so the physiotherapists can pay due attention to each child. As well as the physios present (in water and on trampoline) there are early years workers whom are like portage workers and people trained in speech & language and occupational therapy. This means that using signing as Wriggles does, does not stand out but is accepted and encouraged and there are people on hand to teach new signs. And some of the group leaders even have an idea what she might be going on about, rather than just waving her arms wildly whilst gabbling! Between the hydrotherapy and the rebound, there is a snack time which for us doubles up as feeding "therapy". All the adults know and understand oral aversion and quietly encourage and support, rather than shoving biscuits in her face and shouting "corrrrr bet you're glad she doesn't eat a million chocolate buttons to rot her teeth like my one!". They offer a mix of snacks to try and explore different sensory reactions rather than trying to be the most organic/healthy/cheapest/trendy buffet as so many of the children have feeding issues. They don't bat an eyelid at giving Wriggles an empty beaker so she can be like the children who can drink. I don't have to explain a thing. It is simply, bliss. Last year I feared I was just a bad parent holding my daughter back. This year, I know I am trying until I am blue in the face but that our road is a bit jumbled up.

I would be happy paying to access a group, so to have it on the NHS is icing on the proverbial cake. It is such a relief to know that there are services to help both child and parents. There are so many stories of children being failed by lack of access to things that when you have a positive experience, like this, it makes you very grateful. We have had our own share of care that ranged from scornful to downright unhelpful and so opportunities like these make up for it a bit. It is also a reminder that the NHS should not just be viewed as a luxury. It is the National Health Service, not an add-on. Without it, millions of people would be left to flounder in both development and health. The NHS is not just about hospital procedures or primary care trusts, it is about making the lives of people more comfortable and facilitating Independence. It is about support as much as treatment. And today, it got things just right.




....and in true NHS fashion, I just recieved a letter through the post for our next respiratory follow up. Despite our consultant wanting to see us in under three months time, we cannot have a slot until June and even then they can't gurantee us seeing our resignated consultant. You win some, you loose some...sigh.

Aftermath

After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

 

Monday blues

I don't like Mondays. If Monday sets the tone of the week, frankly I am done with this week already. 

Today we had our appointment with the respiratory paed. We missed our own paed, but got the other senior consultant who is also pretty good and on the same page largely as our doctor. The appointment was by and large, productive. Wriggles had a lovely time playing with the toy truck (future mechanic?) and all hell only broke loose when she needed to be weighed. Unfortunately she must associate side rooms with nurses as synonymous with blood tests and fear, as in seconds, my chirpy little bean was a screaming, rigid, limpet who needed peeling off me. She was so distressed she was stiff as a board and still crying to be measured, so the nurse wrote down "uncooperative with height". I bit my tongue. FFS, she's fucking terrified, not being naughty! She is 2 and has been through more procedures than many do in a lifetime! I know she only meant it in a jokey way but it really made me bristle.

The actual appointment was very thorough. The immune results are not back but will be chased with a letter to the GP confirming if they request a booster vaccine and if so which one, the feeding they are happy for me to manage with help of the dietitians ("and keep hoping"), her tonsil size was checked and we went over her list of medications and checked dosages. We discussed her sleep study and went over sleep history and patterns and they notes even static in the daytime, Wriggles is a noisy breather. This had got a lot better during the autumn but has slowly crept back more and more. The consultant confirmed he thought it would be beneficial to removed tonsils and adenoids. The tonsils are a moderate size and the adenoids are quite large, and we are not yet at 'peak growth' period. He added it may possibly help the night refluxing, as she sucks in her stomach muscles to help breathe when the adenoids narrow her nasal passages, and the extra abdominal work put pressure on the stomach which combined with a lax stomach valve and tummy full of night feeds can aggravate reflux happening. So whilst it is far from a guarantee, it is a bit of hope. I have also read other parents with food aversive children relating that tonsils being removed helped with food consumption and swallowing difficulties. Again, a sliver but hope but sometimes a sliver is all you need to keep going. I have all the usual concerns about having a general anaesthetic and surgery, but a tonsillectomy/adenoidectomy is a pretty common and standard op and aside from GA the only real risks are infection which in our case is heightened as she will not be allowed oral fluids to help the healing site. But as the consultant said, "I have only regretted not sending some children for a T&A, in 15 years I have never made a referral for one I have regretted or has had negative results." That sells it for me.

The thing which did deflate me was another mention of fundoplication; surgery to essentially wind the stomach top around itself to form a wrap to keep contents from refluxing up. This surgery has been discussed on and off since the summer when aspiration was really taken seriously and the feeding tube placed. If the surgery was simple, I would happily sign on the dotted line yesterday. Control reflux? Eliminate vomiting? Be my guest! However, unlike the T&A this is not so simple. It is more major surgery and there is a higher risk attached. Side effects are far more common and the recovery period can be fraught. It is one I have read up on over and over, and whilst I do see the positives and know it has improved things for many, it is not one that sits comfortably with me. That said, we are running out of things to control it. This decision is one that does not have to be made imminently; the doctors are still undecided on whether it would suit us so we have so time to hope either the T&A, diet, maturity or something magical help to control or better still improve things. We had a chest X-Ray to check for aspiration during the latest reflux flare-up so need to to wait the results now in the post. Letterbox, you will become my new friend.

Talking of letterboxes, one letter plopped through this afternoon. A surprise letter about the previous MRI-which had been a disaster and one I was told there were no results from that would be any use and would need repeating. So to receive some results, was a shock. There must have been an image generated that the neurodisability paediatrician could read. It did cross my mind that there was a mix up, but we have not had an MRI before, only the two cranial ultrasounds performed in NICU. The letter read "surprisingly, there are no structural abnormalities. We will discuss further in clinic". It makes me a little nervous that even our development consultant was "surprised". He was clearly expecting something, I was expecting something, pretty much all the doctors we have seen over the last nearly 18 months have expected that something would show up. So I should, in theory, be dancing on the ceiling. No bleeds, no PVL, no lesions. All in all, pretty excellent. But all I can think is, so what the bleeding hell is causing/caused cerebral palsy? Where, are my promised answers? So many things have been chalked up to something we will never know, is this yet, another? Her history frankly suggests that at some point there has been brain trauma. It doesn't help there is no existing antenatal records, but birth and subsequent events are a hotbed for being able to pick things and say, maybe that. An MRI was going to tell me. To pinpoint. To flag up. To answer my questions. It has just generated more. For CP and spasticity there is something somewhere. But not on this MRI. 10-16% of children with CP have normal MRI findings. Maybe I just have to accept that this is us. An MRI reflects the structure of the brain, not function. I just can't help feeling a bit cheated and full of questions to ask. Does this affect the prognosis, the treatment, the diagnosis? Does this warrant extra tests? Do we need to look at genetics, blood tests, anything else? I have a month until clinic. By NHS standards, a month is not too bad. But it is going to be a long month.

So tonight I feel exhausted. It feels a full on day. I am fed up with dealing with things on my own. Sometimes, just sometimes, I wish someone would make me a cup of  wine  coffee and hold me while I toss and turn all night and tell me it will all be ok. 

I am really fed up of seeing my beautiful mischievous daughter love life with all open arms and for life to not always love her back but deal card after card of yet another thing. It seems relentless. 

Less than two hours until Tuesday. Let it be a more uplifting day.

The Letter I've Waited For Forever

After a wonderful day out with a friend and her new baby in beautiful Richmond in north Yorkshire, I came home with the giggle-monster (also known as Wriggles) and found a nonchalant brown envelope sitting on my doormat. 

This letter I have been waiting for in some form for a long time, at least 15 months if not more. In many ways, nearly 2 years. I didn't know what it would look like, the exact words or when it would arrive but there has been some level of expectation that it would come at some point or something similar.

In bold type, amongst some other headings read the line:

"Diagnosis: Emerging central motor defect-cerebral palsy with mild asymmetry and developmental delay"

Since our recent development review when the consultant confirmed brisk reflexes and spasticity in both legs and the left arm, I have increasingly suspected that this would happen sooner or later. Both our consultants and physiotherapists have mercifully always been very open and honest with me which has lessened the blow, although I was surprised to still feel it keenly when I read the words in black and white. It is mild enough to have taken this long to diagnose, and to look at Wriggles you would be unlikely to suspect something slightly different at first, second or even third glance. By all means, as conditions go it is far from severe and because of this is very unlikely to hold her back definitively in anything. Yes, she might have to work harder and take longer to achieve physical milestones particularly involving lower limbs, but there is no reason seen now why she should not achieve anything. So given this, why do I feel so funny?

It's a label, I suppose. Bam, slapped on. Something to live with. A name. A condition. A reason. In many ways, I welcome the "answer" but in as many ways I mourn the confirmation. I've known since practically 'term' that Wriggles finds gross motor skills more difficult and that her reflexes and some core strength is not what it could be. I suppose the surprise, if could call it that, is that this isn't something which is going to disappear. This isn't our bit of prematurity that needs to just catch up. This is something that she will carry to school, to adulthood and beyond. It invites even more unknowns and fogginess to the future.

Thankfully, cerebral palsy is not degenerative. What you see, is what you get in that as it originates in the brain, it is not going to change. 

"Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. The nature and extent of these difficulties may change as children grow but cerebral palsy itself is not progressive: the injury or impairment in the brain does not change. However, the effects of the brain injury on the body may change over time for better or worse. Physiotherapy and other therapies can often help people with cerebral palsy reach their full potential and become more independent." Taken from Scope's website.

In cases like ours, diagnosis is not immediate because it doesn't have to be. It isn't that Wriggles has degenerated, it is just that it was not blindingly obvious before now especially given her prematurity and frequency of illness. Many 'symptoms' of cerebral palsy can also be attributed to different conditions and developmental progress that in some cases can be resolved. We have for some while now been receiving a physiotherapy programme similar to a child with a CP diagnosis because Wriggles was displaying the traits which are treated as and when they are prominent or seen to be hampering developmental progress. Her treatment will not know differ because of this letter; it doesn't need to. It just means that everyone will be aware that there are no quick fixes and she will probably remain on the books longer than expected. It's not just going to be resolved with a ta-da! Look she's walking now! as had been thought whenever she does start walking unaided. And I think that is what stings. 

I'm so glad, grateful and relieved that the linked-up health care and services in my area have enabled her so far and will continue to; I just wish we didn't have to be in that position in the first place.