Proud

Today, Wriggles was seen by our physio to be fitted for her new pink Piedro boots. After being very wary at first and hiding in me crying (I think the poor sausage associates people touching her feet with blood tests; they are rather pricked with tiny scars) she soon warmed up to them and was proudly kicking her feet about. As well as trying to exercises to help her cruising, our lovely physio and myself reflected on the past year that she has been working with us. She looked undoubtedly proud and told us that Wriggles was one of the children she had worked with who had made one of the biggest leaps in development; music to my ears when I know we still have further to go!

When Jemma started working with us after our previous physio went on maternity leave, Wriggles was approaching a year old and couldn't yet sit unsupported or roll over. Her lower limbs intermittently stiffened and then went very floppy, and we knew cerebral palsy (albeit, fairly mild) amongst other neurological diagnoses, was looming in their minds. It's not that this isn't the case anymore; it's just that Wriggles has surpassed the expectations of just how well she has done and now it is beside the point if in the past she has suffered a specific 'injury'. In under a year, she has learnt to sit, crawl, bear weight supported, roll over in both directions and cruise. Although I was told that there was no reason she wouldn't learn any of these things in time, we were also told that there were no promises, no guarantees and we would have to play the waiting game. Yes, it was likely she would eventually walk but by which means or in what time scale, no one knew. She still isn't walking, but she is able to pull to stand and is confident in cruising now and the physiotherapy and orthotics team are satisfied it may take as little as Piedro boots and time to get her to the next level. Everyone who has worked with her, and continues to, takes pride in how far she has come and what a comical little character she now is as opposed to a helpless jerky baby that came home with me, 21 months ago.

a year ago - "I'm really trying, honest!"

So many people think that a premature baby "just" needs to grow to term when they should have been born, leave the hospital and put on some weight and that is that. Job done, prematurity over, scars left behind. And yes, for a few babies that is the case. They can be carried out of NICU and bar a few development checks, never set foot in hospital again. And then there are those who have a very complicated journey to those who have a slightly complicated journey. Those who stay in hospital for months to come moving from NICU to paediatric care before discharge, those who go home with additional support and community care, those who the future looks rosy until something crops up, those that leave but keep coming back...so many variations. For many, prematurity doesn't end when you leave neonatal, the location just changes. The parents live with memories, labels, words, medical jargon they never understood before but do know, living with uncertainty as they wonder if something that cropped up before will rear it's head again in the future. Even as our little babies develop, we wonder like all mums, is she doing that right, is it on time, is that normal? teamed with the added knowledge of prematurity and statistical after effects.

Of course, our journey is far from over; from being resolved. But it is such a boost to hear that my little star has defied what doctors thought she might achieve. I remember the day after her birth, when one of the neonatal doctors came to speak to me. No promises, he said. The next 48 hours are critical for her immediate survival, let alone future. There is no telling what she may be able to do, or not do. And then as she grew older and the admissions started coming thick and fast, her notes tripling in size and the gulf of development inching wider. But then, slowly, she grabbed. She sat (and fell down). Then sat again. She rolled over by accident. Then rolled over on purpose. She started crouching on all fours. She started making 'bunny-hop' movements. Then she toppled over and crawled. Then one day out the blue, she heaved herself up. And I know, one day, whether in weeks or months, she will take wobbly steps. 

Oh baby girl, how far you have come!

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.

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?!)

Proud proud proud

In between some sad times this week, LOOK what my precious Wriggles has figured out!! A genius I tell you. A GENIUS.

A Week

A week can make such a difference.

In a week we have:

• been to a new toddler group and intend to go back (!)
• been for lunch with some mummies. I did have to slightly wrestle Wriggles from cheerfully breaking the china by forcefully banging the plates with a spoon, but aside from that it was very pleasant.
• when bumping into a mum we sort of know, rather than make excuses and scuttle away panicking, we stayed and played and chatted for over an hour.
• Wriggles has gone from wobbly pulling to stand to being able to take a few steps sideways. She can go forwards sort of, but due to her tight muscles, her feet flinch upwards in a more climbing motion.
• Likewise, she has learnt that then letting go and launching herself backwards = a bumped back of head
• Wriggles can make a tower of 6 stacking cups. Hooray for Poundland!
• Wriggles can effectively turn the television on and off. She can also put on sunglasses (upside down) and has learnt that thrusting them up my nose is code for "Mummy!! Put these on so I can take them off again!!!! Now"
• I made a cake and didn't burn it. It even tasted yummy. Tip: translate 1 tsp of cinnamon for several Tbsp of allspice.

Boast over!