First Shoes

I may be mad following this weeks trouble with shoes, but on Friday we ticked off an exciting milestone.

FIRST PAIR OF SHOES.

I had no real intention of making the purchase, but after advice from our physio that Wriggles' feet and legs really need some support to help her standing as she is all over the place, I thought it would be wise at least to get her feet measured. Her feet, like the rest of her, look so dainty that I fully expected she would not fit any of the styles of Cruisers let alone First Walkers. So you could have knocked me off my chair when the foot gauge revealed she was a size 3F!

I was pleasantly surprised by just how good the customer service was in Clarks. It was nearing the end of the day, Wriggles was in a "don't-you-dare-touch-my-feet" mood and I was very nearly going to call it a day and come back when she was more full of energy and likely to enjoy it (if that is ever possible when you hate your feet being touched). But the two ladies persevered in cheering her up by showing her sparkly shoes, flashing trainers and asking to be introduced to Charlie Mouse who had come for the journey. After some impressive persuasion, the little pink shoes were fitted and I decided to just bite the bullet and supply the credit card necessary. We got a photograph, heigh chart and certificate for our troubles. Oh yes, and some New Shoes.

I reckon such a statement of growing up is exciting to any parents for their children, but it left a big impression of me. Such wonderful-yet-to-be-expected milestones seem that little bit more precious after Wriggles' difficult journey, and after the continuing physio and support we have had surrounding her delayed gross motor skills, it was is a pleasant surprise and sheer joy and delight that I see her progressing and with the footwear to match as a badge of honour. 

Back in NICU, "first shoes" never crossed my mind. At that point I did not know if she would ever even be capable of walking as she grew up. My mind lived in the moment; thoughts of the future and the excitement to come were written off simply because of the fear that at the last hurdle they might be cruelly denied. I didn't dream of first birthday cakes, silly jokes or first shoes, I dreamt of my baby in my arms and that one day she would recognise me. Even now, when we are 'out of the woods' and safe at home, growing and exploring new things every day, I don't think a day passes without me thinking back to the difficult start. It is forever imprinted on my mind and I fear sometimes that I don't allow myself enough to become carried away with the freedom of being in the now Good moments and letting myself trust. Even the best times, when we laugh with abandon and Wriggles screeches with laughter and I drink her in, every last little tiny bit that I must memorise forever and ever, after the moment I think back. I am grateful we are now here and there, still sorrowful for being there and in a heartbeat guilty for not being able to let go and forget. But today, was a day of New Shoes. A sign of how far we have come. Nearly two years ago, I could have lost my baby. But I didn't and she has the prettiest, pinkest cruisers to prove it.

Test Driving the New Shoes (did I mention she has New Shoes?!)

Jesmond Dene

There are days when I think I am not too fussed about living in Newcastle. Days when I think that whilst I don't dislike it, I am here almost by accident and although I have some lovely local friends and a fan-bloody-tatstic health service, could be anywhere else. I suspect those points alone, especially the latter, actually make up a large amount of the reason why we are still here rather than it all being a case of chance, circumstance or lethargy to uprooting.

And then there or days, or places, that remind me all over again why I actually love being here and begin to doubt that moving would create any answers. Today was one of those days. There was a brief hiatus in miserable rain and so I decided to be proactive (I say proactive; after some class A faffing and then a phone call from my mother it was actually past 11:30 by the time we got our proverbial skates on) and get us out the door and down to Jesmond Dene. Somehow I always sideline it in my mind, and then upon getting there can't work out why on earth I haven't been back sooner. Although it is not as easy to get to as some parks or places being right at the bottom of a steep valley, it is still very much accessible and better still on foot.

Jesmond Dene is part of the Ouseburn parks network; a series of parks and wooded areas that all run into each other throughout the city, especially from the north to the east. You can happily take a scenic route through several districts should you so wish rather than trudge along busy roads, although you may need time on your side! Once in the valleys that make up the Dene, it is hard to remember you are in the middle of a bustling city, especially one with an industrial past. "Jesmond Dene is a unique haven of peace and tranquillity for the people of Newcastle. It is a narrow wooded valley that follows the river Ouseburn (a tributary of the Tyne) for over 3 km. This provides an important wildlife corridor right into the centre of Newcastle. There is a spectacular mix of native and exotic trees, and the Dene is home to a lot of wildlife, notably the Kingfisher, the Red Squirrel and many woodland birds." It also has the ruins of an old working mill and 19th century banqueting hall which are now used as private artists studios. A newer attraction is 'Pet's Corner'; an urban farm housing pigs, goats, sheep, llamas, ducks and canaries. The visitor centre and Friends society arrange educational activities to bring people together and to explore nature from a very early age to a much older one!

So off we tripped on the metro (which to be honest, is a day out enough for Wriggles who gets madly excited by the whole thing. I am wary she may have a minor trainspotting streak in her) and walked down. Being semi-prepared, I had a picnic cloth and packed lunch.

Being semi-unprepared, when she had a reflux-moment I realised I had forgotten spare socks for her and an entire spare outfit for me. Error. Both me, the picnic blanket and Wriggles' new shoes were drenched in regurgitated Quaver and a whole bottle. Unsurprisingly we got a few funny looks. Wriggles decided this was the moment to try and crawl through it and then empty the contents of the pushchair. Just breathe, I thought through gritted teeth, desperately sluicing the pair of us and all contents down with ineffective baby wipes. Breathe. Count to ten. Alright, 20. It can't be helped. For a brief few minutes, locked in the baby chance toilets with a toddler who thought the whole affair hilarious and an excuse to strew possessions everywhere and squwark when tidied up, I felt incredibly low and lacking in any parental control, ability to comfort or knowledge of what is 'right' and thoroughly cross with myself as a result. I was also worried her feet would get cold and conscious of the fact that my new aroma was none to alluring-not that alluring any goats or similar was high on my afternoon agenda. Thankfully, the visitor centre has a cafe, and a shot of caffeine (me) and new bottle (Wriggles) was able to restore both our sanities and I was granted an increasingly rare giving-in to a nap, giving me chance to wring out my jeans and read some of a book.

Refreshed by some time not having to eyeball one another, when she awoke we were both all smiles and cuddles again and wheeled our way around to Pets Corner. The last time we were here, a few months ago, Wriggles was not yet really interested. She was fascinated by the people and the other children of varying ages and spent rather a long time fluttering her eyes at various men, but virtually ignored the novelty of llamas and phesants. Now a little older, she was far more alert and interested and giggled at the goats trying to clamber out of their pen (unsuccessfully, I should add). She was keen to practise standing up clinging on to the fence for life to see the ducks and wanted to climb on the bench and attempt to manoevre into the pig's pen. Needless to say, the latter was not permitted but the amazement of there being two big Tamworth pigs infront of her headed off further squwarking. Just recently after looking at me blankly for the best part of a year, signing has suddenly clicked and as we went round she signed pig, dog, rabbit and bird at the respective animals. Too proud!

We took a scenic walk through the Dene, stopping every five minutes or so to try out a selection of park benches, which may all look very similar but in actual fact are not.  We tried one with a bin at the left end, some with one at the right, some with no bins, some by flowers, some by gnarled old trees, some by dogs, some by cyclists and loony joggers and one by a bridge. Our trusty stacking cups had come for the ride and so we built up, knocked down, hid and discovered and hooted into them like megaphones (sorry tranquillity seekers). I am a stacking cups convert with almost religious zeal. They frequently come out and about and raise a smile every time. The only downside is that they are very good at being thrown...

It was amazing to see how the Ouseburn had been affected after the weather last week; it normally is slow flowing river that gentle ambles through the Dene, bisecting the valley. The waterfall is delicate and if anything, it is prone to being low and stagnating in the summer. This week though, it raced through and looked a little worryingly high. We walked up to the waterfall, which was ferocious and the speed of the water spat at us on the bridge, a good few feet away. Wriggles was not impressed in the slightest.

Gentle waterfall, several months ago

Mad torrents today post-scary floods

Pre-baby, I would often walk through the Dene, commonly using it as a route between the Ouseburn Valley where I worked part time at Seven Stories by Byker Bridge to where I lived further north of the city. I would go for walks (or hikes, given the steepness of some of the wildlife trails) and explore the systems laid out which are on at least three different levels. With baby, your route is a lot more limited if you have a buggy with you, as much of the footing is uneven and many of the bridges have steps going down and up, or the path suddenly drops away to a sheer looking view. There is however plenty to be seen still, and gentler walks can certainly be achieved. It is more than possible to do it with one pair of hands, though I imagine two would put you at a definite advantage. I look forward to nicer weather (please...?) to be able to picnic out and let Wriggles roam over the grass and inspect branches. It is such a wonderful resource in the middle of a built up city, and so restful and energising to have somewhere so separated and peaceful to go with little hassle or expense. It is the sort of place which grows with children and could be location for many memories being built. The looming trees and canopies smack of games of jungles, forests, fairy grottos. Not having a garden, it is lovely to know that nature is still on our doorstep. When Wriggles eventually takes her wobbly first steps unaided, outside seems a perfect place for gaining in confidence and not accumulating too many bumps and bruises. I just need to find the umbrellas...

27/52 It's all gone WRONG mummy!

17:53

Ways to keep your sanity and temper and keep your child amused and cheerful at teatimes*

17:53

Both offered favourite yoghurt and also selection of finger foods were declined and lobbed over the side in manner of drunk vandal. Milk was fussed about and frustration was rising as time dragged on. Poor Toby-dog on Abney and Teale was getting very ignored.

Cue impromptu messy play.

Add some mixed spice for a nice smell and some pink sugar for texture

Chuck in some mini marshmallows and macaroni for good luck. Hell, why not add an owl shaped stale biscuit. It's not going to get eaten!

Thank goodness. Is that...can it be....just maybe....a...smile?

*not foolproof in the slightest

Quavergate

So we're coming to the end of the first week on our whizzy new high calorie potion, Paediasure Plus. If I can find the strength enthusiam will time, then I may take Wriggles to the hallowed Baby Clinic for a weigh-in next Tuesday to see if it may be working. Then again I may not seeing as she spent the best part of a week drinking next to nothing, let alone eating. And the eating bit is not yet back on track. We are back to what I refer to (mainly to myself; I am getting quite used to having inner monologues) as Quavergate.

Wriggles really likes Quavers.

(I have developed a new tolerance for Quavers as a result.)

It helps if they are proper Quavers too, rather than own brand Cheesy Curls or whatnot.

Quavers first came into our life as one of the many helpful suggestions from other parents when no one medical was taking us very seriously that at nearly a year old, my child was still eating nothing and have seemingly developed cutlery-phobia even if I was the one using them for me. I appealed to the wise people on the Bliss message board community and received some very reassuring responses and suggestions of things to try. Melt-in-the-mouth type snacks, whether your earth-mother-friendly Organix type no-salt-sugar-additives-flavour-guilt-free puffed carrot sticks, or the more common Quaver, Skips or Wotsit were suggested to help her oral skills and give her something to hold, if she so wished. She didn't. There was one blissful moment of curiosity just before her first birthday, never to be repeated for months. I didn't forget though, and made sure my cupboards resembled a well-stocked Asda just in case she ever felt tempted by anything that wasn't out of a bottle.

Around a year corrected, teething was immensely helpful. I don't think you hear that phrase very often. I do believe though, that as well as general development, accumulating trust, etc, that the desire to gnaw generally anything not nailed down to relieve her poor gums, really did help. Because suddenly the very small circle of things that she would mouth (her fingers, my fingers, the tip of my nose, her dummy, Christmas Hedgehog's nose, Mouse, her favourite rattle but not any other rattle, rattly Frog's leg) expanded to include other rattles, books, toes, blocks, the edge of a cushion, paper, cardboard, bath toys and BREADSTICKS. Hallelujah! Although she didn't swallow or 'eat' them, she did chew on them which marked our first real breakthrough in anything not related to fromage frais.

Then, at around 13 and a bit months corrected we started going to a hydrotherapy group for early years run by our physio and some of her colleagues in speech therapy, social work and education. After a hydrotherapy session in the pool, there was snack time. They put out some very baby un-friendly (Annabel Karmel would recoil in shock) such as Quavers, pink wafers and cake as well as banana and fromage frais pots. These foods were specially picked as they are particularly good for developing oral motor skills, especially as every child attending has some level of feeding problems. Week by week, Wriggles slowly consented to touching, then holding, then licking and then tasting. It wasn't until about the last week at around 15 months corrected that she ate one, which was massive cause for celebration. SALT were very pleased too, as it proved that she could develop the motor skills which boded well for the future.

For a while she ate nothing but Quavers.

Considering she ate very little anyway and still battled with reflux, this wasn't super news.

I was over the moon she was gaining in curiosity about foods (well, one food) and branching out, but was a little concerned that Quavers contain very little nutritional value or many calories. Weeks dragged on. It felt like years. If I withheld the Quavers, she ate nothing. Not even a fail-safe fromage frais. Bitterly I recalled the SALT wittering on "Oh try Quavers, they're great at developing feeding skills." I'll stuff you full of Quavers, you silly old bat, I thought. Quavergate was in full swing.

Of course, in true baby style, just when I was teetering on the edge of complete despair, considering sending hate mail to Walkers and wondering if I would ever be able to start a meal without a little yellow foil bag, then she suddenly ate a whole petit filous, tried some fruit puree, wolfed down some custard and sucked my hot cross bun (not all at once. That is the stuff of dreams, dear reader).

I know now that Quavergate #2 is a shadow of it's former hold. She is still recovering after feeling grim; today is after all the first day in a week where using the inhaler hasn't been a necessity. We all, adults and children alike, feel horrid after being poorly and can eat atrociously. If Quavers are her comfort food and give her a sense of Independence, who am I to argue? They are after all, 88 calories per bag versus 64 calories of the Organix Goodies range. Those 24 calories sound ridiculous, but in our quest to stay on the same line on the dratted growth chart, I will take those 24 thank you very much. I might even have them with added Quavers.

2 shoes - 1 shoe = cross mama

Oh dear.

My desperately-trying-to-be-perfect SAHM mantle is slipping. Forget slipping, it has crashed to the ground.

The day started off well. Miraculously we were both dressed, fed and watered by 9am and out the door for a playgroup session at our local Sure Start. We weren't even the last ones in. We played for an hour and a half, sung some songs and trundled off to the high street in our district to collect the new super-duper-high-calorie milk order and have some lunch. As a treat, we had lunch at a cafe and Wriggles had a good go at chewing the crusts of my sandwich as well as drinking a bottle of the new wonder milk. Although slightly over-cast, the sun warmed us and the air was clear so we walked up to the supermarket to collect some bits and pieces. The trouble started there. Not to be out-done by her toddler friends, Wriggles is far too interested in basically, anything other than napping, and is a little monkey to get down at the moment. I wouldn't mind, but without one she is a monster by 4:30pm and dinner, bathtime and bedtime goes down the drain as she is over-tired and answers only to the Bedtime Hour on Cbeebies. Her eyes were drooping as we started down the aisles and so I put up the cover of the pushchair so she could get some peace and drop off.

Wrong.

The next half hour was spent trying to persuade her that napping was infinitely preferable to trying to throw everything out the pushchair and pull things off the shelves. After a while, I gave up and sped round eager to leave. Everything done, in near record time, I suddenly noticed something wasn't right. There were two pink socks poking out the pushchair. 

We came in with two shoes.

One shoes, I removed swiftly and placed in my handbag as one leg is far more flexible and she can take this shoe off with her eyes closed. The other leg, is normally safe and my handbag was out of space. 

Well, safe no more. I will have to find a bigger handbag or some jeans with gigantic pockets. 

We traced out steps back round once, then twice, then three times. Wriggles smirked and giggled.

I could feel my annoyance rising. Not only were we now wasting time in blasted ASDA, there was a really irritating in-store radio with a infuriating simpering woman on it waxing lyrical about Smarties, there was poor air conditioning and Wriggles was now trying to escape and chuck things simultaneously. Clearly naptime was off the radar. After round 3, I gave up and stomped off to the tills then checked in with lost property and customer service. Nothing. 

Why I got so irritated I have no idea. The little shoes weren't very expensive, but they are the only pair we have with semi-decent soles and we are supposed to now be defying all traditional baby-feet advice and wearing something with some support and a grippy bottom to help her muddled-up legs. As I got worked off, I got yet more worked up at myself. Why did I care so much? Big deal, toddlers are contrary and throw things. We loose socks all the time, to the hoover or lord knows where. I am continually puzzling over my diminishing pile of pants and that doesn't try my patience. Still clinging on to hope of a nap, I bundled Wriggles into the parent room to change her and give her a drink before leaving. Again, common sense seemingly flew off in the air and whilst my back was turned for half a second reaching for something, she kicked over the open bottle of milk which went everywhere. And then I ashamed to say, I saw red. I don't know what came over me, but for a few seconds I was furious. I was tired, hot and stupidly the puddle of milk mattered more than my little girl. I snapped crossly at her and tapped her on the leg. Not a proper smack by any means, but my goodness regret coursed through my veins. Hot shame flew over me, berating me. You're one of THOSE mums, you can't keep your temper, you can't look after your own child, you should be ashamed of yourself. You're no better than the young single-mum stereotype. Why don't you pick up a smartprice bottle of vodka and stamp back to your council flat and sit there are swear and ignore your child! Better still, why not put her in nursery where proper adults can look after her. It's not like you're doing a good job. Trying to find some calm, I mopped it up and held her close and looked into her beautiful face as finally she stopped fighting and her eyes fluttered shut in my arms. Gently, I placed her back in the pushchair after a few moments of just being still and walked out, home.

I rarely loose my temper. In general circumstances, it takes a bit to get anything stronger than an "oh, SOD" out of me, far less a raised voice or anything physical. I know I'm quite critical of myself, but on the whole, I am a pretty laid-back flexible person verging on the indecisive and vaguely hippy. I like having a sense of routine but am far from lost without one, and 'make it up as you go along' could be my catchphrase. I don't loose it with Wriggles especially that often, and spent large chunks at present trying to remove her from the bin, stop her tearing pages from books or from stealing biros (honestly, I had hidden every last one high up and somehow she finds ones I never remember owning) and trying to scribble on the carpet. It doesn't rile me. It might make me do some deep breathing but not shout. I am used to recurrent refusal of food, things thrown on the floor and wasted. I walk away. So what the dickens am I playing at today?  I am putting it down to ill-child-syndrome. After a hospital admission, I am often out of sorts. Exhausted mentally and physically and stirred out from having to recount every aspect of the whole sorry story of the last 22 months and pouring over bad memories so that the on-call consultant can get the picture. We leave elated at being let out again, but on a state of high alert trying to remember that things are not going to go downhill. Not this time, not now. My emotions are magnified and my responses less measured and lacking in reason. I feel such a magnitude of responsibility and sometimes with no-one daily to turn to for reassurance, the desire to get it right gets to me and rips out my instincts, temporarily replacing them with someone I don't recognise. Of course, in time everything is back to normal and I am left wondering what I was making a fuss about.


As much as playing hospitals, the reality is that this parenting lark can be hard graft. Just when you think you have sussed out your baby and are proudly imparting advice to those slightly further behind, things change and you have a new personality, new sets of whims, new routine and new parenting attitude to learn and quickly. Mostly, Wriggles is a delight but some recent toddler-ish habits and less attractive traits are creeping in (sleep regression, pouting, the emergence of some tantrums, shaking her head to everything, wilful vandalism of toys, thievery of possessions and lack of concentration on erm, anything). Suddenly I need to clarify my position on discipline, work a new routine which suits us both as a family unit and find tactics to avoid these toddler-isms wherever possible. I have no problem her being herself, but I do not want to stand back in la-la-land watching while testing boundaries becomes deliberate bad behaviour. Granted, we'd have a fair way to go, not least because she is lacking in some understanding still, but I do not want to be in a helpless position because I could have done better at the time. I want to continue being proud of my daughter-and that we did it by ourselves, together.


My mum is an early years worker and I have grown up hearing complaints of parents just not doing enough and I so want to be one of the good ones. Not just for anyone else, but for Wriggles to give her the best start I can. I want her to know she is loved and safe (but not immune to discipline when needed!) and to continue being a pleasure in mixed company and a delightful figure who commands attention for all the right reasons. Of course she is going to test my patience and press my buttons: we are both only human. I think I just need more practise! As much as I am looking forward to a period of time spent the two of us at home, I am also nervous. What if today is a sign of things to come? What if I have got used to bundling her off somewhere else a few days a week and just can't do everything alone? In my heart of hearts, I know that is just parent-guilt speaking. That horrible worm that burrows it's way into your psyche, making you doubt every move you make and pointing out that so-and-so down the road does it better.


It is a little like having a newborn, or equivalent. Everyone says airily "oh it's so TIRING" and you nod politely whilst thinking "how can such a small and sleepy baby be so disruptive?". Then weeks later, you are shrieking "why didn't you tell me what hard work it was! I'd have stocked up on restful cucumber slices, Mozart and gin if I'd known!". Likewise, everyone alludes to the Terrible Twos whilst your cherubs sucks on their toy's ears. Surely they would never...? Oh yes they will. Even the nicest baby has his or her wilful moments. Even Mrs So-and-So down the road. Just because she says it's all fine and they never have a speck of trouble, that is no reason to fall for it. We are all eager enough to trade stories with a comic edge, but more reluctant to share anything that shows us off at our worse. I can't remember meeting up with mum friends or going to a toddler group where everyone trades in expletives and the worst time they lost their rag. Because we all do it. Or will do it. And short of reading your children wrong and being genuinely out of control, they are not the worse for it. After five minutes anyway. 


I left the smartprice vodka on the shelf. For this time anyway.

A Beautiful Adventure

Today, I am counting as the first "proper" day of donning the SAHM mantle. Yesterday, I was very poorly myself and so good old CBeebies took over all proactive parenting (although I, not CBeebies did lock the toilet door as I don't think Mr Bloom's arms are long enough to fish an inquisitive toddler from hanging over the toilet). I did also manage to feed her the main meals (milk, Quavers, milk, milk, breadstick, milk) and by the afternoon even read a story and make some soup.

Thankfully, this morning I felt refreshed and though was very sluggish to get moving, finally managed to get us both dressed and find some energy from somewhere (I think it was hiding beside the teabags). After epic proportions of faffing, I decided to drop us in the deep end of doing "activities". Partly, if I had to read another 'That's Not My....' book then I might have screamed. I love that my daughter loves books, I really do. However, I slightly loose some enthusiasm after the 26th story in a row before 10am. I suspect that is what Parent and Toddler groups are for-I had intended to be up and out bright and early to attend one nearby me which we have been to before and isn't too intimidating, but noticed that Wriggles is still covered in a viral rash as this wretched infection works it way out of her. She is much more herself today and I am certain it is clearing and unlikely to be contagious, but I can just imagine what another eagle-eyed parent might make of her spotty arms!

So out come the paints.

I think we both surprised ourselves with the fun. I was a little apprehensive as Wriggles has been really funny about textures and some sensory stimulus before, but she got stuck in pretty quickly. As well as decorating a big sheet of paper, she has kindly also applied to artistry to the fridge, the floor, a fridge magnet and my bin. Serves me right for underestimating the wriggliness of a Wriggles with painty hands! 

The postman dropped off a leaving card from work, which brought a little tear to my eye. Just a little one. Amongst some wonderful messages ("here's to all the dancer's knickers you washed", "thanks for never saying no and mucking in") was a little message:

"Hope you and Wriggles find a beautiful adventure together that makes you both very happy."

I suspect that whilst my version of a beautiful adventure and my ex-boss's interpretation may be worlds apart, but the sentiment and the words made me came over quite emotional. As I reflected on it, taking a sleepy Wriggles to her cot for a nap, I realised I had my beautiful adventure right there. Being a parent has it's downs as well as ups, and sometimes the never ending trail of washing, snotty noses and guilt, always the guilt, seems to go on forever but I think none of us would have it any other way. The last year and a bit has been a bit of trial trying to juggle single parenthood, medical appointments, depression and working and I am now so looking forward to some special time with the wonderful little person that brought this all about. The little person that makes me smile like there is no sadness, laugh like a loon and dance like no one is watching (builders, I'm sorry you had to see that).

So, here is to some much-needed time as a stay-at-home-mum. The next chapter of my, our, adventure.

Accepting

Another appointment, another referral.

Sigh.

This time, orthotics. To be fair, it has be brewing a while and the initial referral was made a while ago, then cancelled, and now have been referred again. The physio is happily, delighted that Wriggles is pulling to stand and cruising. It is so lovely to see the professionals involved are really responsive to changes, as if they were family members or friends. The glitch is the old high muscle tone again. It has improved massively, so the hope is that with a helping hand (or foot) from orthotics we can avoid too much intervention. Her right leg which has always been the limb most affected, goes onto tip-toe and the other leg is overly flat-footed which now confusingly smacks of low muscle tone. "She always HAS liked to be confusing," our physio mused. It looks as though until this problem is sorted out, we will not be seeing any unsupported walking as essentially her legs are not strong enough to bear any weight let alone create movement.

Apparently we are likely to be looking at three options.

Option 1 (our physio's preference): supportive or modified shoes to help her feet stay in the correct places and in turn support the ankles which will align the knees and help the hips.

Option 2 (apparently likely to be orthotics preference): splints. Possibly for one leg, possibly for both.

Option 3 (a good idea but our consultant is too good at sitting on the fence for this probably): medication to control muscle tone and eliminate any spasms. I suspect because although Wriggles' problems delay her, they are really relatively mild compared to other children, that this will rule this out. Muscle relaxants seem very proactive for our chilled out medical entourage and I am not sure without a hell of a lot more information how I feel about them. 

I know when the appointment letter comes through I will feel a little bit deflated and a bit sad for Wriggles that yet again, there is something different happening for her. But on the whole, I am glad that things seem to be moving in gaining support and exploring options relatively early to hopefully ensure the older pre-school years and the future is smoother.

As time moves on, I am accepting that the magical "catch up by 2" is unlikely to be applicable to us. Wriggles is doing FANTASTICALLY and there are many areas which I have zero concerns on, but there is no way we will be getting discharged anytime soon. Her current notes record global delays and her feeding and dietary management is still very much a muddle. Ironically, when we left NICU, the consensus was she was "fine" and we would be one of the lucky families with no problems;  a clean bill of health and no developmental glitches. I know it has slightly surprised everyone who has known her since birth or the early days that she is still accumulating both referrals and needing a fair amount of input across multiple areas which will continue to be the case for the next little chunk of her life. I am not expecting to be given a specific diagnosis anytime soon or even if there is one. I suspect prematurity at least indirectly is the root of all of the discrepancies throughout development and that our recurrent admissions to hospital are also playing havoc with getting things moving (literally).

It is a bit of a shock initially to discover that what you imagined rearing a child would be like is actually going to be accompanied by lots of other things from guilt, pain, sorrow, nosiness from others, tuts, opinions, always opinions, and an endless list of appointments and professionals who have suddenly moved in as part of the family. But then again, raising any child is a bit of a foray into the unknown, whether they are a glowing picture of all that baby manuals illustrate or otherwise. The generic e-mails we get and bulletins "Your baby is now 21 months! He/she will be talking in sentences, eating five course dinners of nutritious organic fare, running around and restoring world peace in all corner of the globe" are enough to frustrate any parent who is doing their best only to realise that they are not the ones with the entire control. You cannot force any child, far less one with complications, into achieving beyond their means, beyond their time.

Would I like it if Wriggles walked? Probably, yes. Do I care that she doesn't? Not really, no. Sure, in a 100% hypothetical world where prematurity, disability and developmental setbacks don't exist, that would be super thanks. But they do, and they can affect you, or me, whether we knew or anticipated it or not. It doesn't detract from a child's perfection or innocence. It simply carves out a different path for them to walk, and as I remember all too often, that path nearly wasn't there at all.

As we head towards Wriggles' second birthday, we are slowly gathering in more professionals. At 1, we had our neonatal consultant and a physiotherapist. At nearly 2 we have traded in our neonatologist for a paediatric consultant who also doubles up in neurology, a dietician, a speech and language therapist, our beloved physiotherapist and now an orthotics personage and it is likely we will also gain a respiratory consultant. Proof that you can never plan life. I never expected to have a child with a label, either temporarily or long term. But I wouldn't swap her for the world.

Hands off: she is mine

26/52 Some Calm After the Storm

It has been a difficult end to last week. I want to dress it up and put a really positive spin on things, shrug my shoulders and say "hey ho, at least...." but I feel rocky and if I feel rocky, then Wriggles must feel very sorry for herself. She is hedgehog-ing away next to me in bed and my ears are a little bit afraid to sleep in case I don't hear her begin to rasp and wheeze, should it start up again. I'm not a hypochondriac, we have been in hospital. Yes, AGAIN. This cause: the common cold most probably.

It scares me that a cold renders my daughter terribly poorly.

It scares me to see her hooked up to monitors.

It scares me to see her suddenly dependant on oxygen and nebulisers.

I know she is bigger now, stronger, more robust. It's not that I am haunted by bad memories continuously exactly or that every nasal cannula brings me back in an instant to intensive care, be it neonatal or paediatric. But every time you see your child surrounded by tubes, wires and equipment, it chips away a little at your heart with the unfairness of it all. I know that despite the admissions, I do now have a take-home daughter but it doesn't stop the grief seeping back in when I thought it was shut out.

Most parents have the pleasure of seeing their children breathe in and out, wiping noses and bothering the GP. I, with thousands of others, have had the privilege of getting exclusive access to the club of parents who haunt the world of ambulances, spout medical terminology, have open access to hospital and being able to spot respiratory distress and jump on it. Or, try to jump on it only for your efforts to be futile. Best to get to hospital then double quick.

It is moving towards a diagnosis of asthma: although her bouts of respiratory distress are only connected to infections, either viral or bacterial, the fact that her episodes are quite severe when they do happen and respond to bronchodilators are key factors to the doctors. As one said, it could be that her preemie airways are hyper sensitive, it could be reactive airway disease, it could be recurrent RSV infections or it could be infant asthma: at this stage, as long as she responds to treatments when needed, what it is called right now is beside the point but it wouldn't hurt to throw a preventative inhaler of steroids into the mix to see if it helps. I am so glad that there is a plan of sorts forming now. It is a relief to know that both we are being taken seriously now and that people care about what happens to us. It is good to hear medical professionals saying enough is enough, this is getting silly.

As the NHS have been so kind to us, we earned our keep as normal by providing a case study for groups of new medical students. One of the doctors we have come to know well looked very pleased to see us as we ticked multiple boxes to pick the brain of his newest protégées. We patiently sat and recounted back the last 22 months to a circle of scribblers eagerly jotting things down and tried to ignore the sympathy in their eyes. What did slightly surprise me, was that more than one consultant this time was more open than they have been in the past. A lot of time it feels like has been put into persuading me I overthink some aspects which have been laughed off. But this time I finally found out that a) they officially have her down as globally delayed and b) they are still considering aspiration as a cause of respiratory troubles. These sound tiny things in the grand scheme, but somehow it is a relief to hear it in black and white. Global delay does not retract in any way from her progress that she has made and is continuing to make. Although it is a little surprise to hear that we are now getting names for things, it also makes me feel a bit more comfortable that finally we all seem to be on the same page so to speak. And just to prove that doctors don't know everything, we also did a brief class for the medical babies in sign language for small people!

And at last today, after a weekend of feeding my syringe and reliance on inhalers and calpol, it seems we have turned a corner.

Long may it continue.

I prescribe a trip to the park....