Pardon my tardiness...

...as it's been a while since I last posted ;-)

It's been a pretty full-on few months. Katelyn's first steps since being released from her spica cast coincided with an extended family camping trip to Mudgee (Central West NSW), and it was wonderful to celebrate the joy of her achievement and strength with her grandparents and aunties, uncles and cousins. And perhaps a few celebratory wines and beers, as well. She started to walk just shy of one month after she had her hip spica removed, which, from what I hear from her specialists, is quite exceptional. We've also been caught up in the flurry of everyday life with a young family - preschool, birthday parties, Little Athletics and Kindermusik - while work, for both of us, has proved to be more than a little challenging.

Our home life has seen a return to the 'lock-down' state which is synonymous with having a mobile toddler in the house. The fridge is clipped closed, items in the pantry have been moved above little-hand-height and the magnetic cupboard door locks have made a (most unwelcome) return. The toilet brush is seldom housed in its protective casing and it's not unusual to have to rescue an array of teddies and dolls fearfully awaiting a spin in the washing machine.

The princess herself currently spends her days tearing around after her big brothers, climbing atop tables (and freaking her parents out) and parading a never-ending procession of bags, hats and shoes. Compared with other children her age, she's not as steady on her feet, is physically slower and appears to have stalled a little in terms of her speech; although, with much encouragement, she's improving everyday. On the flip side, her fine motor skills are exceptional and she seems to have a talent for music and dancing, showing a surprisingly good sense of rhythm and timing for her age. 

We went back to see our Surgeons about six weeks after Katelyn's hip spica was removed.
The good news is that Katelyn's hip looks good - the femur's back where it needs to be, meaning that the closed reduction was a success.

The possibly-bad news, however, is that the Katelyn's hip and femur is currently showing evidence of trauma, and an indication of some loss of blood supply to the area. This could potentially develop into a condition called Avascular Necrosis of the Hip, or AVN. It's a hard condition to explain, but, basically, bones are living tissue, and like all living tissue, they rely on blood vessels to bring blood to keep them alive. Most living tissues have blood vessels which come from many different directions into the tissue. But certain joints of the body - like the hip - have only a few blood vessels to bring in blood. If the blood supply gets damaged, there is no back-up, and the bone can die.  

Cheeky Miss. Wearing my old pinafore from 34-odd year ago. Serious vintage.

Fancy a bikkie?

Wheeeeeeeeeeeeeeee!

Riding in the rain at Mudgee

"Don't!" One of Kate's fave words.

AVN is very rare - but it can happen. It was one of the scary things the Surgeons told us about when they talked us through the potential risks of Kate's surgery. It generally takes months to develop and be properly diagnosed, so, until more x-rays in January next year, we're in a bit of a holding pattern until we can know more. They're not telling us much at this stage, but what we do know is that there's nothing much we can do to reverse the condition. It's come about because of Katelyn's late diagnosis. Her hip was dislocated for so long that those crucial blood vessels supplying the bone became irreversibly damaged. On probing, Kate's Surgeon admitted that the treatment for AVN is surgery - many more surgeries - to reconstruct her hip as she grows - but that we can potentially look forward to twelve months' off from the Hospital, with no surgery likely to be scheduled for 2013.

So, I guess that's the real reason I haven't posted in a while. I guess I'm, to put it impolitely, a bit pissed off. Okay..a lot. But, at least we knew of its potential to develop, so it wasn't too rude a shock, I s'pose. It just makes me angry. She's a good kid, and she doesn't deserve it.

We're trying to stay upbeat. Really trying. We know things could be much worse. Meanwhile, it's nice to see her acting like a normal (naughty) two-year-old...even if we can never leave the fridge unlocked again! 

The Blog post my husband is going to read...eek!

"So, I'm writing this Blog thing," began many a conversation between Grant and I over the past five months.
"What do you think of..." I asked.
"Does this sound okay?" I questioned.
'Will I sound like a dick if I write this?" I said...many times.
The fact is, my dear husband, Grant, has not read my Blog. Until now.
Grant and I have been best friends for nearly eighteen years. Half our lives. 
We share everything. Everything. But this Blog has been the first thing that we have not.

Elke and Jenny start to remove the cast

Noisy, noisy, noisy!

Katelyn tried to sit up not 30-sec after the cast came off!

Happy!!!!!!!!!

Kate's legs were very dry, red and scaly under the cast

'Pass the Parcel' at Kate's combined 'Plaster Cast Blast/2nd Birthday'

Kate's (first) cake... it's okay, that's not her Port

Four days post-spica

Six days post-spica...morning cartoons on the lounge

LOL - action shot on the Dino! Fathers' Day, 2012

Kate's 2nd Birthday - 6 September, Delight at her 'Fur-Real' "Bub-bay" (puppy)

First hydrotherapy session, 6 September 2012

First hydrotherapy session, 6 September 2012

Birthday Dinner!

Katelyn's 'shy' act where she closes her eyes..if she can't see you, you're not really there!

mmm, choc!

23 August 2012 - koala cuddles!

It's not that he hasn't been interested, or supportive. He has been, of course, because he's awesome, and the absolute best.
It's just that this whole thing with our baby daughter, Katelyn, has just been, as he put it, "too close".
And now - now that the first leg of our DDH journey has come to an end, he feels he is able to revisit the highs - and the lows - of these past few months. Eek - I hope he still likes me after reading all this!
Katelyn's cast was removed after thirteen long weeks on 23 August 2012.
It was a wonderful day. Without wanting sound all poetic and stuff, that late Winter day was blissfully warm and full of the promise of Spring. 
After dropping Harry at Nan and Pa's, and Will at Preschool, we arrived at John Hunter Hospital a little after ten in the morning.
We met the wonderful Elke and Dom and went through to the cast removal room. Thanks to some prior warning from the girls, we'd come prepared and armed with some chocolate for the ordeal we'd heard was to come.
Turns out, the chocolate was forthcoming, but the drama was not. True to form, our brave little girl not only abstained from crying throughout the noisy cast removal process; she giggled her way through it! The only tears came when faced with her first bath in three months; that was all a bit too much.
It was so good to hold her so close again - and, to this day, almost three three weeks' later, she's still just like a koala, and can't cuddle close enough.
We all had our best nights' sleep in three months that Thursday - Katelyn was so much more comfortable, and able to turn over on her own. Our family celebrations continued that weekend, where our 'Plaster Cast Blast' saw the party continue late into the night.
Kate's second birthday on 6 September coincided with her first hydrotherapy session at the Hospital. Following a somewhat rocky start - where she insisted on having ALL the floating rubber ducks in the pool - she shone like a star, mastering the ability to 'cruise' along the side of the pool before the session's end.
We are just so proud of her determination, strength and resilience - it's not yet been three weeks post-spica, but she's already trying to walk on her own. It's going to be a long road, but she's taking the first few steps....and they're big, strong ones.
The horrible cast might now be off, but our DDH journey has, regrettably, just begun. Our hydrotherapy sessions will continue for another five weeks, after which our 'land' physical therapy will begin. We'll also be back to the Hospital in another four weeks for some 'standing, supervised x-rays' which will enable us to gain a more complete picture of the rehabilitative route ahead. 
In other news, the past week has brought, at least, some clarity as to why Katelyn suffers with this very crappy condition. Turns out her mummy suffers from a condition called 'hyper-mobility' - which can result in - yep, you guessed it - DDH in their daughters. When someone is hyper-mobile, their joints stretch far further than what is normal - I'm in, like, the 5% of the population who has this - lucky me. I know you can't turn back time, but I can't help thinking what could have been if I had known about my condition and been more watchful of Katelyn and her propensity to develop her condition. Hindsight, huh?
Anyway, I'm super appreciative of everyone who has read my Blog and expressed their support along the way. Although Grant is only now just reading my account of our journey, I have shared with him everyone's positive thoughts, helpful advice and kind wishes, and we have both been buoyed by the lovely words and comments. Thanks heaps xoxo

Best intentions...well, bugger those ;-)

Now that we're nine weeks into spica, with only three weeks and two days (and five hours...but who's counting?) to go, I had been feeling all reflective and had decided to pen a post on what we've learned and how we've (all) grown over the past couple of months.

As I said, the best of intentions....

I was all set to wax lyrical on what we couldn't have lived without - our spica chair/table in the early days, our tiled floor (as opposed to scratch-prone timber), our First Years Portable Booster Chair and the trundle bed on loan from Grant's Mum and Dad that allowed us to reclaim our bed and to all get a better night's sleep. I was poised to ponder the things which haven't been as hard as we expected - nappy changing, sponge-bathing / hair-washing and how it became easier to entertain a near-two-year-old the more mobile she became. And the things which have proved harder than expected - carrying and lifting, keeping the cast clean at mealtimes (a draped tea-towel does the trick for us) and grocery shopping, which is physically impossible on my own with all the kids in tow.

But then, one night after all the kids had gone to bed, Grant and I were sitting together in the lounge-room enjoying our half-hour of together-time and quiet reading before we collapsed, exhausted, into bed.

"I'm going to write a blog post about what we've learned over the past few months," I said to Grant, resting my book (haha, no, it wasn't '50 Shades'!) on my lap.

"Maybe I can include things which we have learned along the way and perhaps it can help another family who's going through the same thing. What would you say has been the biggest thing for you?" I asked.

I waited for him to have a sip of tea as he thought.

"It's her smile," he said, eyes shining.

"Her smile is different. When she smiles now, it spreads over her face and she smiles with her eyes, too. I don't think she's hurting anymore."

Yep. He's so right. Katelyn is the happiest she has ever been.

Like I said, the best of intentions. I'll cover off on all that other stuff next time.

Katelyn and Charlie 

Playing peek-a-boo in her Ikea tent

Liking those leaves!

A spanner (or k-wire) in the works

An interesting twenty-four hours has seen Katelyn's cast change which was scheduled for 23 July brought forward to the day after tomorrow.
Katelyn's now been 'in-spica' for six weeks and we were counting down the days until her mid-treatment cast change which had been booked in - albeit, late - for eight weeks' in. While we've been careful to protect her cast from spills and thrills along the way and have been fastidious about her hygiene, the fact of the matter is that spicas get smelly. Really smelly. I had heard that this is entirely normal - six weeks' worth of skin and sweat build-up (ew, gross!) ain't gonna be pretty. But, yesterday morning, when I could smell my poor princess from six feet away, I decided it might warrant further investigation.
I enlisted Grant's help when he came home from work around 5pm. Armed with a packet of wipes and a torch, he set about doing a bit of an examination of the cast and nappy area to see if he could pinpoint the cause. There, under the cast, and over the top of her sore left hip, was swelling and seepage. Her 'big wound' (the smaller, completely-healed one, is near her groin) had come open.
We rang the Hospital's E.D. but, being after-hours on a miserable Winter's night, were advised to stay at home, monitor Katelyn's condition (she was comfortable and happy with no fever) and call up to the Hospital in the morning. 
Turns out the cause of the issue is one of the two k-wires which have been inserted to hold Katelyn's hip steady. One of them has dislodged and is now protruding and opening the wound. The k-wires are apparently about 2mm each in diameter, so the smelly mess inside her cast (and the potential for infection) is not insignificant. Because of this risk, Kate's surgeons have decided that it will be best to bring the cast change forward to Friday so they can remove the pesky  k-wires and apply a new cast under a general anaesthetic. She's been taped up to protect the wound site and we're now preparing for another over-nighter on Friday. And, if I remember to ask, a bright pink cast this time. Because the purple's 'sooo six weeks' ago'. And because I hear hot pink's the colour for Spring 2012 ;-)
Kate on the move 
http://www.youtube.com/watch?v=3kcN_17sDAU&feature=youtu.be
Little Miss Giggles
http://www.youtube.com/watch?v=tpnF1NTq4a8&feature=youtu.be

Little Miss Tenacious K

As of Monday, we will be one quarter of the way through Katelyn's twelve-week stint in her plaster cast.

A lot of people have asked how Katelyn is doing since her operation, and my best response is "she's adapting". And so are we.
Not a day goes by where I don't marvel at Kate's willingness to accept being confined to an awkward, uncomfortable and heavy cast and her determination to make the very best of her time in it. Little Miss Tenacious K.
The first few days at home were hard for us all. The passing of each hour without tears (from anyone) was something to be celebrated. Our glass 'whiteboard' on the kitchen wall became Katelyn's medical chart where we recorded each administered dose of a suite of 'special medicines'. We found this was the only way to keep track of where we were up to as fatigue blurred our consciousness. The days became an endless three-hourly cycle of shifting Katelyn's position (from spica chair, to tummy, to back, to bed, repeat) and changing her double nappies. The nights were long and, at times, lonely, because all though Grant and I have been taking turns sleeping in our bed with Katelyn and being 'on shift', dealing with the frequent wake-ups and continuing the three-hourly ritual on your own can make you feel as if you're the only one in the world awake at 2am. And 3am. And 4....
And then it got better.
I quickly figured out that Katelyn (like her Mummy) is happiest when she's got something to do and places to go. That first week at home saw us visiting our friends at work, taking in a trip to Oakvale Farm and a commencing a staged return to daycare. We found out that Katelyn's frequent wake-ups (there was one night where she woke every 3-5 minutes until 3am) were the result of muscle spasms (which are common side-effect of osteotomies) and were prescribed some Diazapam to help Katelyn get better rest at night. Following an unfortunate spate of poo-nami's during our first week at home, the nappy-changes suddenly didn't seem as daunting and we can literally now do them in the dark (and in Katelyn's sleep). Before I kiss her goodnight, Katelyn shows and tells me where I need to put the rolled up blankets which go under her knees to support her legs and prevent bed-sores. And, exactly two weeks after her operation, Katelyn started to commando crawl and is all the much happier for it.
Don't get me wrong. It's still hard-going. Despite being the fittest and strongest I have ever been, I have aches in muscles I never knew I had from lifting and carrying Katelyn, who, in her y-shaped cast, weighs close to 20kg. Katelyn has reverted to the very clingy baby she once was and doesn't like us to leave the room, so it's hard always being 'on', especially on those longs days when Grant's at work and I have all the kids on my own. And, if I thought the daily 5pm 'witching hour' was trying before Katelyn was in her cast, well, let's just say that bedtime now can't come quick enough.

Kate playing with her vintage Family Tree-house. 

A change of scenery in the front yard. She's showing off her ubiquitous bed hair. We're going through a lot of  'detangling' spray right now!

Cheeky xx

Making a friend at Oakvale Farm.

Beautiful afternoon - nice break from the rain.

Painting our nails!

Sleeping beauty with her 'Jaime' doll xx

Rocking her tartan look

Forget 'Princess Grace' - this is 'Princess Kate!'

But, I'm glad to say that Kate, with her family, is 'adapting' and we are 'adopting' our new normal. 

One week down, eleven to go

Wow.
If I could describe DDH in one word, it would be "rollercoaster". Sheesh, what a week, probably best illustrated by a recap of my Facebook posts. I'll draw a breath while you read ;-)


Monday

Striking a bit of a pose in her gown

What I said: Incredibly tired, but elated that our baby girl's surgery went well today. She was soooo good, despite a 5hr wait for the 4.5hr operation. Kate's surgeons are very pleased with the outcome and she was transferred to the Ward tonight around 7pm. She had a tenotomy, a reduction of her hip and a pelvic osteotomy; and has a lovely purple cast. Dolly has a matching pink one. She was so amazingly brave, and we are completely in awe of her. She is still drowsy from the anaesthetic, but is no pain, thanks to her epidural. Daddy is doing the night shift...hope he gets some sleep! We will try to upload some pics as we go. Thanks everyone for your messages. It means a lot xx

Way too much energy for a little girl who'd been fasting for ten hours!

What I was too tired to say: we had to arrive at the Ward by 7am but had a five hour wait as we were last on the list. We arrived armed with our books and a swag of toys to keep Katelyn amused and, due to the ward-wide 'no hot drinks' rule, managed to survive the morning without a caffeine fix. We figured if Katelyn had to fast, then we would, too. Still can't believe how well she coped with the demands of hunger and boredom; we think she was just delighted to have both Mummy and Daddy all to herself for the morning! We got the big call-up around 12.30pm and it started to feel real. We dressed her into her hospital gown and loaded her into the bed to be wheeled upstairs to Theatre. A kindly nurse, David, met us there at the Desk and I managed to keep it together as he did all his checks and obtained all his consents. Then he said it was time for me to say goodbye. Our little girl was laying quietly on her pillow, looking up at us. I pressed my face into her chest as the tears started to fall. I just didn't want to let her go. I told her I loved her and I was so proud of how brave she was. As I drew back and reached for a tissue, Katelyn pulled herself up to stand in the cot. She reached her arms up to me and pulled me close for another cuddle. Then she lay back down, smiled and waved bye-bye. That was pretty much the end of me. Poor Grant bravely managed to hold it together as they took her into Theatre to send her off to sleep. Then we both lost it. Big time.

Recovery Room

The hours passed. Lunch was mechanically chewed. Coffee was greedily gulped. An entire book was read. Some more coffee. And as night began to fall, so too did my spirits while impatience began to simmer. Finally, at 5.30pm, Katelyn's Surgeons came to tell us they were happy with the operation and that she was starting to wake. Cuddles with our brave, dozy little girl, and her recovery begins.


Tuesday
What I said: Grant and Katie had a reasonably restful night last night....and I managed to find some zzzzzz's as well. I was on the day shift today, and Kate was really great - played, slept and ate - until about 3pm when we think the epidural needed a bit of help. She was very upset for a few hours, which was soooo hard to watch. On the plus side, however, we have now been initiated into the dark arts of changing a nappy around a hip spica plaster cast. Fun. Not. Anyhow, Grant's just reported that she has now settled into some good sleep, and I'm hopeful that will continue tonight.
What I found out later: humph, 'reasonably restful' is all relative. Turns out Grant somewhat sanitised his version of the nights in hospital in the interests of keeping me somewhat sane. The screaming, which would often start seemingly out of nowhere, was horrible. Our baby was in pain, and there was nothing we could do except keep up the pain medication and cuddle her. Not even ice-cream helped, which is when we knew we were in trouble. The day further descended into disaster as the cyclonic Bailey boys tore through the Ward to visit their sister. The offered her a fleeting kiss before ripping into the play-dough provided by the Play Therapist (Harrison) and hypothesising "how the wee comes out of Katelyn's grub into that bag" (William). Exhausting. The late afternoon arrival of a cheerful bouquet of well wishes from the lovely Ausgrid girls provided us with a real boost when we needed it the most. And the choccies were yum!

All wired up in the Ward

Wednesday
What I said: nothing. 
What I wanted to say: nothing. Can't talk. Too tired.


Thursday
What I said: Following a very welcome move to a private room yesterday, Katelyn had her epidural, drip and catheter removed today and is now, to a degree, mobile!! With both the boys occupied at preschool and daycare, Grant and I got to share some time together today with our little girl. We also ticked a few of the logistical boxes, with the OT modifying our stroller and car seat to fit around the cast. Katelyn enjoyed going for a stroll around the hospital and through the wonderful Fairy Garden before settling in for some serious playing at her new spica chair which is on loan from the hospital for the next twelve weeks. While she still seems to experience severe bouts of pain (or frustration?) and dissolve into tears at times, overall, we're seeing a wonderful return of our daughter's beautiful, bright personality and it's just so good to see. Hopeful, too, that we might only have one more night left in hospital :-)
What I didn't have time to say: thank goodness for our ever supportive family who have spent the week ferrying the boys to and from preschool and daycare. We braved another visit from the boys on the Thursday evening and it was much easier having them contained within our own room. And I had the best spag bol for a late dinner, courtesy of Aunty Amanda.

First wire-free cuddle with Mum!

"Who, me?" Loving her new spica chair

"Home time!"

Watching me make the boys' lunches this morning

TV time

Friday and the weekend

It was wonderful to come home on Friday and be back in our own space. We worked out that Katelyn won't fit in her cot or on her change table, so our bed is now her combined bed/change table. We're taking turns, for the foreseeable future, sleeping on the lounge so Katelyn can have the comfort of a parent and our bed. Her sleep can be fitful with pain and because she needs her nappy and position changed every couple of hours (to prevent spoiling and bed sores respectively), the parent who's 'on' doesn't get the best rest going. Coffee is good the next day. On the plus side, however, I think her pain is beginning to diminish and the smiles and laughs are more forthcoming. But is it too soon to start counting the days?

See you on the other side....

I woke up on our lounge this morning to Miss Katelyn crawling in to nestle under the warmth of the Winter quilt. I had decided to camp out on the lounge rather than risk waking Grant as I tossed and turned and, besides, there was another restless (little) woman sharing our bed last night with flaming pink teething cheeks.


As the morning sun crept through the crack in the curtains, I relished this lovely quiet moment, choosing to stay awake rather than surrender to sleep. I savoured the sound of Katelyn's steady breathing and the scent of her hair as she cuddled her soft little sleepsuit-clad body against mine. As she murmured and gently curled her fingers around mine in some sweet dream, I watched the early light dance across the room and made plans for the day.


We'll need to be at the hospital by 7am tomorrow for Katelyn's 11.45am surgery. I suppose I'll have to pack our bags, but that can wait. Packing will just make it all seem real, so denial will work for me today.  I'm going to kit Katelyn out in her pink Oobi jeans, her twinkle-toe Skechers and one of her cute little tops which will be too small for her once she's in her cast. The boys are battling the dreaded pinkeye, so we can't venture too far from home. We'll play outside on the swings and let Katelyn go up-and-down-and-up-and-down the slippery dip to her heart's content. We'll have a little disco party so the kids can dance along with me and Grant to bad 90s music clips. I will serve some of Kate's favourites - spiral pasta chicken bake and crumbly choc-caramel tarts - without having to worry about any mess slipping down into her plaster. And tonight, she can have an extra deep and extra long bath-time with her brothers and they can splash around as much as they like.


I am grateful for all the hugs, offers of help and words of reassurance. We are buoyed by the support and I know it will help keep us all strong. See you on the other side xx

Busy, busy, busy - not long to go now

With just over one week to go now until Katelyn’s operation, we’ve been super-busy trying to get everything organised and everyone ready for our hospital stay.

As 28 May draws closer, we’ve been overwhelmed with messages of support and offers of help and it really does help to know we won’t be alone on our journey. I’ve found some excellent support online and have been drawing strength and absorbing lots of practical tips from the worldwide members of a couple of really great DDH Facebook groups.

We have also been, as much as we can, trying to solve some of the logistical problems of transporting, clothing and entertaining a 20 month old encased in a big, heavy plaster cast for three months!

A special temporary mobility permit from the NSW Roads and Maritime Service will allow us to park our car in extra wide spaces and hopefully make it easier to haul Katelyn out of the car and into her modified stroller (without damaging the car next to us!). It was a hard-fought bureaucratic battle, but we won. We learned that doing the research beforehand and being pedantic, polite and firm can has its advantages. The RMS learned that you don’t get in the way of Lion and Lioness Bailey when they’re protecting one of their cubs.

We have also started to amass a whole load of new toys which will be perfect for play in Katelyn’s special spica chair. Thanks to a lovely lady on Etsy.com, I arranged to have one of my favourite (and very hard to find!) childhood toys, the Family Tree-house. shipped over from her vintage store in the United States. It's the perfect height to sit on a table and play with (and the little family is sooo cute!). Reckon I might spend a bit of time playing with it, too! We've also sourced some really cool toys from Educational Experience, such as the magnetic Dressy Baby Set, to help refine Kate's dexterity while she's confined to her spica chair and unable to develop her gross motor skills. Oh, and thanks to a suggestion from my lovely friend from work, Tania, we bought an iPad and have loaded it with heaps of toddler games and applications. I'll also be armed with plenty of baby-sized musical instruments, bubble blowers, play-dough and crayons - but, if you can suggest any other ways I might be able to keep a very busy and bright baby occupied, pleeeeaaaasssse let me know!

Another wonderful long-time friend from work, Inez, has bought us a fantastic portable booster chair with ‘open sides’ to accommodate the y-shape of the cast, and this should allow Kate to sit with us at any table to eat.

Katelyn’s already enviably bulging wardrobe also now has a whole array of tops , dresses and nighties in bigger sizes (2s and 3s) to fit around her body while she’s in the plaster cast. And, depending on how far the cast extends along her feet, she’ll also have a lovely selection of leg warmers (I even found a glow-in-the-dark pair!) to dress up her purple cast. Grant has volunteered to 'engineer' a solution to allow the legwarmers to accommodate the metal bar which will run between Kate’s knees. Even after seventeen years, he simply amazes me. I think he is truly the best husband and daddy in the world.

The Princess, herself, is oblivious to all the activity. She’s had a rough few weeks with the inevitable coughs and sniffles which herald the start of the Winter season and we can see her hip is giving her some trouble. There are some days where she walks with a pronounced limp and others where she’ll fall over, land awkwardly on her bottom, and start to cry. We know we’re doing the right thing. We are going to fix this. And she is going to be perfect.