The first of the broomstick casts

Tomorrow's the day

Should be the last day of the full spica tomorrow and we should be down to broomstick cast. Here's hoping!

Time ticking by

Our last check up went well with the femur still in place and some early indications of improvements in the shape and positioning of the bone and cartillage.

Alex is very confident in her cast and really enjoying transition into toddlerhood.

Like all kids around her age its fascinating watching her speech develop and having fun with words. Were thinking that her speech may be reasonably advanced as a result of her not being able to run around but its only a theory. What we do know is that she has very strong arms and shoulders now!

Our next change of cast is on 1st october at which point she should get a slightly less restrictive cast.

Recent pics below from the last few weeks.

First cast change

Alex is back at home after having her cast changed. She's time and went through the procedure very bravely and pretty much wanted to leave the hospital as soon as the anaesthetic had worn off. The new cast is slightly higher and tighter which annoys her a bit but she's pretty much used to it already.

She had a general anaesthetic and dye injected into her hip so they can see progress. He said that the was still in the right place so thats excellent news.

Now just need to wait for four weeks to see how the cartilage is growing back around the joint and have another scan.

Two weeks until our first cast change

The weeks are now ticking by which is great and we have now been joined by our au pair Karen from Netherlands who moved in Sunday to help out for a few months.

Alex is still pretty happy and loving her outings. Weve managed to keep her cast clean and dry. She does occassionaly still pat her legs and say bet-ter which is a bit heartbreaking but we can only wait.

Sometimes I wonder what shed be up to if she were running around like other kids but mainly I just enjoy being with her and having fun, tickling her, playing games, and dancing like we always have.

She wasn't so sure about the sharks though.

In two weeks she will have her cast changed. This requires a general but no surgery so should only be a day visit.

First check-up post op

We had our check-up today with Mr Graydon and the feedback is that Alex's femur is still in the correct location post-surgery which is awesome.

Alex was very good in the hospital and didn't seem to mind revisiting her old haunts. Especially not where getting a fluffy was concerned. Next step is in four weeks where her first cast will be replaced by another Spica case for a further six weeks. So only 10 week to go until she's out of the full Spica!

She will however have to be in a broomstick cast for a further six weeks after she'd out of the Spica, followed by a further possible six weeks in another broomstick cast. A broomstick cast will allow more movement - it's just the legs connected by a broomstick as per these ones - hardly built for running about but a distinct improvement on the Spica she's in today.

Anyway all-in-all a great day and we're hoping that her recovery continues in the same way.

Also the doctor checked Saksia's hips today - and they are fine but we will also get a CT of her to be sure.

Helping out in the garden over the weekend

Weekend shenanigans

Had a brilliant weekend with a trip to the zoo and walks to the beach. Alex is learning to push herself backwards too and very much enjoying all the new toys everyone has sent over. We are also getting used to the comments from other kids. Thanks so much to Jens mum for helping us through that difficult first week. There is a swing in Cornwall park with a strap to hold her in so she can swing by hetself again. Would be good if all Parks had these. Must be loads of kids who need a bit more safety on a swing for one reason or another.

Next scan on Thursday with specialist appointment on Monday.

Getting there..

Over the last couple of days Alex has adjusted well to her cast. She now just points where she wants to go and we become her legs.

Still sad seeing her immobilized but we're having fun and keeping her entertained feeding the birds, playing at her new table and going out for walks in her stroller.

She's happy enough on her tummy for a while now. The odd pillow here or there is required but she's started trying to shuffle along too.

She's been getting loads of attention and has returned to her old self of trying to be the centre of attention wherever possible.

Eating and sleeping is pretty much back to normal.

Now if we could just Saskia to sleep at the same times we'd be in business!

Santa's workshop

This morning wasn't so great. Alex refused her medication and had a meltdown, as did we.

This afternoon went a lot better as we all got stuck into making a few pieces of bespoke furniture for the spica. Bespoke makes it sound like something posh. In our case it was a bit more Fools and Horses but time was of the Essence.

Alex loved being towed around on her new trunki style seat and playing on her "bespoke" play table.

Great to see a few more smiles on her face and cheeky grins coming back.

What a beautiful day

We've had an amazing day. Despite having spent a few days in the hospital I got totally lost leaving and nearly locked myself into a stairwell.

The contrast of Auckland waterfront with the sea glistening on a wintry Saturday contrasted markedly with the hospital situation.

With not an afternoon to lose we headed down to the beach and alex was in heaven.

Managed a swing and a slide. She has to do these things sitting on me but she still enjoyed the playground and had lots to stay about everything which is great.

We made a high chair for the kitchen island from a chair, toolbox and a couple of pillows and roof rack ties and she ate dinner at the table in her stroller.

She's eating normally and back to all her normal tricks so we're very happy.

So glad to be at home.

Happy travels and speedy recovery Jo and Sarah!

Our next scan is in two weeks to see if hip is still in correct place.

Leaving Ward 24a

Alex has made it clear that she's had enough of the ward so they're letting us go home!

Great to get out and start getting back t normal. Alex is pretty chipper about seeing outside of her room.

Through another day :)

I've read that the first three days in the Spica are the hardest. Probably on both the child and the carers.

Alex has been so stuffed full of drugs this last two days that now her little body spasms every time she starts to drift off and she wakes up with a jerk and a fright.
We have taken her off the IV morphine and she is just on IV fluids. If she can just get a good nights sleep she will feel much better.

She is comfortable and not in any pain.

I am feeling more confident managing the spica and moving her around. It is heavy though.

Once we get through this week I am sure we will get a routine going and the time will fly by.

She did manage a couple of smiles today too and wanted a cuddle from saskia which cheered things up.

Observations from day 1

So I think I fed her way too much for breakfast as she was sick all over the place this afternoon.

They wrap the nappy area of the spica in tape to stop it getting wet but not the chest bit.

So I would advise that the vistim should wear a bib in the first days post-op to avoid the spica smelling of sick for the next six weeks.

Anyway.. car seat and stroller both fit the spica which is great so she will be used to these.

Also if your going to put your kid in a spica avoid doing it at the same time as dealing with a three week old baby as it is complete mayhem.

Auckland hospital coffees are getting me through the day and we MAY be able to home tomorrow. Cant wait.

1 down about 179 to go

So the first night is done.

Approx zero sleep for dad but Alex had a great night. She's still on the morphine drip for her pain but no significant swelling and apart from being a bit tender near the insertion she seems pretty good.

The nurses here are just so good to her.

We even managed to sit her up this morning for breakfast and she had a voracious appetite.

Plan is to remove her drip this morning and sort out the equipment for home.

She's been cast pretty wide with a broomstick for support so getting around may be a challenge!

Back in the ward

So the doctor says it all went well and the CT scan indicates the hip is back in place. Alex is drifting off to sleep and relaxed.

Waking up from surgery

Ok so she wasn't very happy about it. But the surgery went well and she is now starting her recovery. Long 4 hour wait for news but she is now back in the ward resting.

Surgery day

Our brave little girl getting ready for her op

What is this blog about?

Alex enjoying her bottle the night before surgery

Our daughter Alex has been diagnosed with DDS which is Developmental dysplasia of the hip

According to the specialist this happens about 4/1000 births of which only 1/1000 are not picked up until Alex's age (18 months).

She had been a bit unstable while learning to walk and had also been a late walker but no real signs of the issue until recently when her walking did not improve and she started to favour one leg.

An x-ray revealed the dislocation and the specialist has recommended an open reduction hip surgery followed by a long spell in a bilateral long leg hip spica cast (6 months approx).

We are trying to stay positive about this - it's obviously not great news but we are viewing the Op and recovery period as being positive steps to her overall recovery, and long term well-being which is paramount.

This blog is intended as a record of the experience so perhaps other people who are in the same situation can get an idea of what's coming up. Every experience will be different for every patient and every family. 

This is our family journey.

So far our family support has been amazing and the staff at Auckland Hospital have also been amazing.

It's a rubbish situation but we are going to put everything we can in to getting our daughter back on her feet.