30/52 Spot the Baby

Piedro Boots

Today was our appointment with the Orthotics in the "Gait Lab" to assess if Wriggles needs additional support for walking and if so, what. Our physio had warned us that she was willing to take a hefty bet that she would be needing at least some support, whatever it was, so to be prepared to come away with something. She was not wrong; we have come away with an order for some pink Piedro boots.

"Piedro boots are orthotic shoes designed for children with disabilities and/or children who require extra arch or ankle support . They look similar to a normal boot but open closer to the toes so they are easier to put on children particularly if their toes curl. Piedros help to maintain a good foot position for standing (and walking) and may be tried before other orthotic devices such as AFOs are used."

I was pleasantly surprised that the styles of Piedro boots now are far from clumpy and hideous and "sensible" but are very child-friendly and practically funky. Judging by the chunky catalogue that the orthotics team possessed, they come in styles for every occasion and age range to suit the individual child. In our case, fuchsia nubuck boots.

They will be fitted in a few weeks to help the toe-clenching, ankle wobbling, wonky footedness and help control the variable muscle tone that appears to have lead to all of the above. I'm really glad we have an opportunity to try these boots before moving to anything more hardcore and I'm really really glad to have a supportive and proactive physio and a very competent community paediatrics team in my city who so far have been nothing but helpful and reassuring. Too many parents have to fight for help for their children and would trade in their right arm (and left one. And their leg) for some productive help or to get "in the system" to advantage their offspring. Having been born into the system and never having been straight forward enough to escape it, we are lucky to have always had someone to advocate for us because we've always needed some aspect of help or monitoring. And I really hope I do not sound ungrateful when I say this because I truly am anything but, but this in itself makes me a little bit sad. I love that my daughter is able to get help when she needs it, and I'm really glad that sometimes help can be bright pink and supportive, I just kind of wish we didn't need it in the first place. I will always take what is best for her, but a little bit of me that lives in the world where pre-Wriggles I dreamt of what it would be like to have children, wishes we could be in the Clarks shoes gang everyone else is in.

"OW!"

Children are many things, but one thing they definitely are are great levellers. They are excellent at humbling us older "wiser" types by themselves and their defiant innocence and are also good at breaking down barriers between fellow parents that otherwise loom large. I think all us parents are guilty in some capacity of having looked at other parents whom often we know next to nothing about and view aspects of their child rearing with contempt, mild horror or snobbery. I would never do that, we might think. MY child would never dream of doing ... [insert here]....

Until of course, they do.

Even the most perfect and well behaved cherubs have off days. Even the nicest ones learn by pushing boundaries or going a bit loopy. Sometimes the little horrors that we adore and idolise have several off days in a row, leaving you wondering where an earth you went wrong.

In the early days, fresh with enthusiasm and ideals about How I Would Do Things, I thought I had a fairly watertight plan of action to things. Fast forward almost 2 years, and weary cynicism has crept in and the rulebook, or at least dratted baby books and parenting manuals, have been thrown out the window or are being used as doorstops. Of course I still make snap judgements about others much as I'd prefer to say I didn't, but now I do have more compassion for other strained parents and care far less about what anyone might think in turn of me. Not because anything is vastly different, just that like many of us down the road of parenthood, I have realised that babies and toddlers have personalities. They have wills of irons, minds of their own and some inherent behaviour that I swear they swap in code at baby groups that they all seem to do at one stage or another. Even the really nice ones.

And so, today I got bitten for the first time.

Wriggles was having a tantrum. She is teething and it was hot all day. Refusing to nap, I tried in desperation to get her to listen to storytime at the library. She crawled off and went up and down the stairs, shrieking loudly as she went. God forbid, a little boy was in her path, listening innocently to the lady reading a circle of angels a story. Shriek shriek shriek. To try and save the sanity of the little group who were previously shrouded in peace, I removed my small child to go and menace somewhere a few metres away instead. She roared in defiance. I was enjoying THAT PATCH OF CARPET! (I think was the translation). In her thrashings of displeasure, she gave herself a very minor bump of the head which made her even crosser and then sunk her teeth into my arms.

Then I broke the peace of the library and emitted a surprised and pained "OW!"

Although I was surprised at the timing, I was not surprised at the bite. I have been semi-expecting to get bitten at least once, as all the offspring of people I know (apart from those owning the very small) and those I don't whom I may have earwigged on, have been bitten in retaliation, confusion or experimentation by now. I have been under no illusion that I have a child so angelic she would never do such a thing, but have been suspiciously waiting for her to strike and pick her moment. Wriggles is far from a thug, but she is a toddler. A teething toddler who is beginning to discover the power of "no" and not always getting her own way. I do hope it is a one off, but I suspect it is heralding the departure of my snuggly baby and arrival of a foot stomper but (please!) equally delightful toddler-proper.

Like I warily expected the inevitable nibbling of my arm (nibbling sounds too gentle; I have marks to prove it) I expect her to shout at me, have tantrums, mortify me in public, cause me to snap and probably as a teenager tell me I've ruined her life at least once a year if not once a week. Not because I expect or think that she will be a badly behaved child, just that she is a child. And children make mistakes and learn and err, exercise their emotions for want of a better phrase! Even those where the sun shines from every orifice are not perfect. At least they are, possibly, but not every single moment of every day. Which means likewise, there probably isn't a perfect parent out there all the time. Even those that seem to have tripped out of a Boden catalogue with their 2.4 families, pedigree dog and Aga have crap moments when they curse the fruit of their loins and all their teeth/chattering/insults/mess/toys left out ripe for tripping over. 


I just wish they told you earlier!

My Happy Girl

Today, I had some friends over. This isn't exactly unusual as we often meet friends either out or in, singularly and in groups. Today's friends are those I don't see every week, and the four of us adults lazily amused my adorably smiley little girl who was clearly in her element basking in the attention of quadruple what she is used to. For a bit it made me a bit sad that my family is not the "traditional" idyll it could have been if things had been different. My friends visiting have been on our journey since the beginning, and the two of them that I have known for longest were rocks in the long PICU days, often giving up time to come and sit in the claustrophobic room with my comatose baby on the brink. None of them have children yet, and as much as I love my mum-friends who save my sanity and make days of the week go quicker and more enjoyably, it is also refreshing to be with caring childless friends who don't have the worries, competitiveness or strains of child development, or the lingo that goes with it. Questions or comments were made innocently, curiously and sympathetically.

"Why isn't she walking yet?"

This is a question which normally riles me, brings my defences up and prickles at my soul. Yes, I know she is nearly 2, I know all her peers are walking, I know maybe she "should" be. But actually, today it didn't make me cross or upset. I explained about the prematurity thing and corrected age and that the repetitive illnesses have delayed development on top of any genuine delays. I explained about the muscle tone and that that was why we had multiple input (which I think baffles many people, because Wriggles looks so perfect they can't imagine why she would need it) and that we were still sort of in limbo to see if it was worthy of a diagnosis that may have more long term implications or whether it would sort itself out. That it may prove to be more positional, more muscular, more structural or more neurological or a combination of some or all of the above.


We all looked at the happy squwarker, who was troubling the book box.


It wasn't bothering her.

She didn't care.


Everywhere we go we receive compliments as melts everyones hearts and charms the socks off people. She really is the most lovely little person I could ask for, and I know our family and "urban family" of extended friends all cherish having her, us, in their lives. When you think of a medical problem, or situation, or label, a certain stereotype can spring to mind. Before this whole journey, I'll admit maybe I was biased to. But over the last 22 months, everything I ever thought has been challenged and I've drawn up a whole new set of preconceptions, of expectations and pleasures. Seeing beauty in things and people and celebrating wonderful children who might otherwise have lead very different parts. We've met those with far more severe limitations and those like ourselves who straddle the border between one camp and another. Those who may well have been in for a much-rougher journey but by miracles of fate and luck, have actually bypassed any hardship and unexpectedly followed a very expected pathway. And all of their parents feel the same way about their children as I do about Wriggles. 


It's so easy to become pre-occupied with labels and names, and sometimes they are necessary and very positive. They open doors to help, provide support for everyone and give answers. Sometimes though they can overshadow the person that has been labelled though. The smiling child.


As I explained today, I can't predict where our future will take us. Sometimes I suspect it is one thing, and sometimes I think another. I'm not sure I would be overly surprised either way as to getting answers or not getting answers, especially as our wonderful physiotherapy team have always been very gentle and honest with us. I have to put my faith into a professional which although I can grasp the basics of, have no idea of the more technical or complex aspects. I can put my faith in my little girl: that bit is easy. But strangers? Will they know how special she is, how much she deserves? That is the hard bit. I can take not knowing when things will happen because I trust they will. I just want everyone to see the best in my happy wrigglebottom whether she gets a new "name" or not.

What would you call me?

29/52 Beach Days

Feeding update

Sod's Law dictates that whatever we want within a time frame will of course be denied. Probably to be fulfilled as soon as it is not relevant.

Since our appointment with the dietician and the fact although improving, Wriggles' oral aversion is not disappearing anytime soon, Wriggles has gone from being practically curious about meal times to back to square one: refusal. There I was a month ago, blethering on to lovely Ruth about the amazing progress and how proud I was, to have it all grind to a halt. Although she will consume or at least chew, very small amounts (I'm talking mouthfuls, or pieces the size of my fingernail constituting a "meal") of dry textures like corn and maize snacks or crispbread, these are so low in calories they are in dietary terms counterproductive. I have been frantic in trying to avoid getting a feeding tube but am slowly coming to be at peace with if we end up with one, we end up with one. 

Three weeks of ending up back at square one, encountering all-out refusal of any solids, difficulty feeding milk (our one and only source of calories and nutrition) and being back to all manner of tactics to get out of any feeding has made me feel a broken mama. Against all my wishes and attempts at it being otherwise, feeding in any situation now, including drinking which it never has been, is a battle of stubbornly massive proportions. It was never meant to be like this. I was trying to hard to teach enjoyment and acceptance and the opposite has happened. No 'usual' tricks work, and any former fail-safes have fallen. The progress we made painstakingly had been rapidly backtracked on through a combination of illness, teething, toddlerdom and the horrid beast that is oral aversion. 

Would I be far more patient if I wasn't on a time frame against tube feeding?

Maybe.

Then again, maybe not. I suspect any more patience, any more gaily aborting mealtimes in the face of tears and upset, any more tackling defiance, would only be the work of a saint. And I am not a saint. I, like many others out there, am a humble parent trying to do the best but sometimes that will be called into question.


There are two big things I have been thinking about recently. One, is something a doctor said to be in hospital, and one is a debate which I have read on many feeding blogs and in support and awareness groups.


1. "Is it ever 'right' to use a feeding tube for children?" mused the doctor to his students.

And as he followed up, yes, in many cases. In premature infants before they can suck or swallow and co-ordinate, in sick children who cannot feed, in children who for a vast array of reasons either cannot eat or drink or cannot co-ordinate, those with complex medical needs and those who do not tolerate a variety of feeding. What he was specifically addressing though, was FTT (Failure to Thrive) children. It is a tricky question, and one he admitted he sat on the fence about. Given that food is available, surely a child will not let himself actually starve or dehydrate? Would even the worst feeding disorder be conquered by approaching starvation and malnourishment? And on the other hand, is it more cruel to push a child to those extremities which may prove fruitless? What if by that point, the child's internal sensory and psychological hard wiring was so confused, that the same signals and reflexes did not register? A hard choice and not one to be taken lightly by parents or physicians. 


2. ...which lead on to "is it more cruel in either long or short term to keep pushing food as a primary source, or to rely on an invasive feeding tube to be able to let the child go at his own pace?"

Again, not easy to answer and one that ultimately will differ from each child, each situation, each paediatrician and each family. I have always been of the opinion that feeding tubes are a no-go zone. A last resort. Giving up. And then along came oral aversion, blighting our meal times. We have gone beyond toddler-tactics. Beyond baby book advice. Beyond crafting edible animals and such like out of lunch. Beyond trial and error. Beyond simple solutions. Beyond discipline. We are in a murky territory and more than it pains me to see Wriggles not eat, it pains me to see her unhappy. And sometimes, she is miserable around food. Actually, sometimes? A year ago, I thought I must be doing something wrong. That there must be something to change and it would all suddenly fall into place. It is frustrating, but I now know there is no suddenly. Yes, there are small victories and milestones that feel HUGE, but no sudden snap of the fingers. This is going to take time. More time and more patience that I ever envisaged. I must admit, I have begun to wonder if it is more harmful or hurtful to keep pushing constant feeding on her. When she does feed, it is so slow that it can be easy for one thing to run into the other. The only way to get a decent amount of calories (and nutrients) into her is to ensure she drinks at least 600ml of Paediasure Plus a day. This is no easy task. She struggles with large volumes, can take well over an hour to sink a bottle and becomes bored and upset easily. She still struggles with a strong gag reflex too, which all too often undoes the hard work of the previous hour. Would her quality of life be improved by allowing her more freedom, or would it be hampered with more medical intervention? I am not wholly sure I can answer that right now. Since switching from a peptide to this current milk, I think she has put on weight. I can see one less set of ribs at least. But if so, and if they quite happily drop the feeding tube shebang at the next review, what then? Do we just struggle on in vain? I am beginning to wonder if part of the problem is that the poor mite feels she is in her eyes, constantly being asked to feed, with little satisfying result. It is going to take a lot more than some simple distractions or super-yummy food to turn mealtimes into fun times. More than just trust. Is it fair to ask her to carry on like this? 


A lot of food (haha) for thought for this premmy mum.

13 months old in hospital, when there was a vague plan to place a permenant NG tube that got quashed at the last minute, two hours before discharge!

3 weeks on

So, it has been three weeks since I hung up my work satchel and donned the (even more) food stained cardigan of a full-time SAHM.

Mostly, I love it. But even doing it for about 25 more hours a week than I have been for the last 14 months or so has been testing at times. I'll hands up admit that  have far to go in this mama process: every day is a learning curve. The difference now, as opposed to last year, though is that I can recognise that pretty much all mums of a similar stage feel similarly. Fleeting conversations at baby groups or in the park revealed a set of parents hell-bent on being the Perfect Earth Mother but at times struggling to read their baffling offspring and anxious of Doing It Wrong. Even without prematurity or feeding disorders, I appear to have become in possession of someone who knows her own mind and by goodness is she going to exercise it! At times, it is exhausting but also exhilarating. That is, when it is not really exhausting.

Things I have learnt so far:

1. Get out the house EVERY DAY. Without fail, unless one or both of you is poorly. Even in the rain. Suddenly the scales of trying to combine work-and-motherhood-perfection have been lifted. So many previous days off were spent in the house, alone, eyeballing the baby. No wonder I foundered. Butterfly minded small people need distractions and changes of scenery. Mamas need space.

2. Find a plethora of free and low cost things to diversify things you can go to regularly. This week we have been to the park, the beach, a free science museum with hall of mirrors and small soft play area for under 5s, a parent and toddler group and our usual signing class. We seem to be gingerly finding a routine of doing an activity or outing for one half of the day and being at home for the other.

3. Set a goal time to both be dressed. This sounds really silly especially with a nearly-2 year old, but I have found it helps. Unless we have to be out earlier, our goal is for at least one if not both of us to be dressed by 9am. Invariably, at 9:01am I jump into the shower whilst Numtums distracts Wriggles. It is not the end of the world if we are still in jimjams, and sometimes a lazy morning is just what is needed. Not every day though. Or it will drive me mad.

4. Socialise. Even if you think you want to be a hermit. It doesn't mean you are sidelining your child. My best moments this week have been when in the company of friends. Judging by Wriggles' giggling, I think she would back me up on this point.


5. Try to hang the washing out on the same day you have done it.

6. Ditto the washing up.

7. Even if you are tired, lunch does not = a packet of biscuits. There is a lot to be said for (very vague) meal planning. An area for definite improvement!

8. No one really cares if one or both of you is not wearing matching socks.

9. All mothers will occasionally loose their rag. It does not make you the devil incarnate. Breathe in and count to 10. Glare at toy Rabbit. Glare at small child if necessary-she probably has her back to you terrorising the bookcase again anyway. Stomp off to another room for a few seconds. Having an emergency chocolate tin really helps. Toddlers, it seems, were invented to try the patience of a saint. All this hard work of winding you up will be undone in an instant once they reach out sticky hands to loop round your neck.

10. Ignore all nosey bats. One mile in each others shoes and all that.

Boxes

After being admonished for my messy flat this week, I have tried to be a little more organised.

I will admit, being a mother does not always come naturally to me, especially when my buttons are pushed and I have to juggle a million proverbial balls in the air, but what does come naturally to me is a double-sided-sticky-tape-Blue Peter-ethos.

So here is some I made earlier:

1. Take some empty boxes (I used Pampers nappy boxes; any will do to house your junk)

2. Find jolly wrapping paper, wallpaper offcuts, old maps or similar

3. Locate double sided sticky tape. The decorating stuff from DIY shops is a million times cheaper than the fancy-pants type from art and stationary shops.

4. Cover box is sticky tape

5. Stick on jolly paper

6. Fill with junk that is currently on the carpet

7. Make nosey old bats who look through your window both amazed, and jealous

Coping

I must admit today I was a little taken aback today.

I was speaking to a woman about a genuine housing issue, which we agreed on and then she came out with:

"You know, every time I come and look through your window it looks really messy and you seem very chaotic. Are you coping?"

I felt instantly hot.

And a bit like my mum had caught me doing something I shouldn't have.

Then I felt cross.

Is it not bad manners to go deliberately looking though people's windows when it is otherwise avoided?

Was she actually trying to help or was she being a nosey bat? Previous experiences with her and other residents experiences with her very much point to the latter. However innocent until proved guilty. Maybe.

"Is your Health Visitor helping?"

I gabbled some things and bade a quick goodbye, shutting my front door and smarting. I didn't need to look: I knew my front room was a mess. I have always been messy and struggled to stay on top of tidying up. Recently has been extra hard, as I have just felt my bones so heavy with exhuastion that it makes me feel a little ill. I'm really not deliberately slovenly but maybe I could try a bit harder. The trouble is, in the daytime as soon as I put something away, Wriggles will empty an entire box, and at night, all I can do is collapse. The one time I did try to have a proper evening blitz, Mrs Downstairs complained about the noise. Am I just making excuses for what has got out of control?

Ultimately, I know that I will tidy it spick and span by hook or by crook, whether by putting Wriggles in a high sided box or by irritating Mrs Downstairs. I will because it really is a mess. At the moment, the Wriggles friendly bits are not too bad (excepting all toys she has strewn about and untides as i go tidying) but even I won't let it get to the state where it is hazardous for her. But 'my' bits, are a little shameful. So naturally I am here writing about it rather than tidying. I do care. Sort of. But also, quite a lot of me doesn't.

Am I coping? Yes, I would say I am. Coping. That is all. I wouldn't say I am doing much more because clearly, I have things to get on top of before I can rise to the next level of whatever comes after coping. I know that I am not not-coping because not-coping is horrendous. Not-coping means not even noticing mess or not caring about anything. Not-coping means barely being able to move. Not-coping means not speaking to anyone but Wriggles or barely leaving the house. Not-coping means panic attacks and horrible thoughts coming thick and fast. So I am coping. I am able to keep not-coping at bay and get through the day. There is a start, a middle and a finish. Not-coping eclipses all time. My coping might look like someone else's not-coping, but I know for me, that is enough. After a much better time recently, I know I have taken a bit of a stumble suddenly again. But I know also I will pick myself up sooner or later. And that is coping: knowing there is not just a tomorrow but a day after that too.

When people, other than very geuine people close to you who would help in an instant, ask the dreaded "are you coping?" question, I find it a little irritating. Mainly, because exactly what are they going to do if you say no, no I'm not?

Would they for instance, find me a partner?

Would they pay for a cleaner?

Would they give me an extra pair of hands?

Would they find me more hours in the day?

Would they be able to answer the eternal question, of why toddlers empty things?

Would they iron all my fears out straight?

Would they remove my scars of bad memories that don't go away?

Would they teach my daughter to eat?

Would they wave a magic wand?

Would they take some of my tasks off me so I had a little less?

Would they give me just half an hour to help?

No, they would not.

They would look a little bit uneasy, like my Health Visitor, and maybe pat my hand. And then they would go and think thank goodness it's not me.

So I'll just keep on coping until I'm better than just coping. And in the meantime, I might even finish the washing up.