Doings - August and September!

Not as many doings as we are normally, well, doing, due to being at home a LOT with Snail.  But we get out when we can.

To the wonderful Bush Kindy, organised by a dear and wonderful friend.

Treasure hunt collage!

Sunny days doing a bird ID walk at bush kindy.

The very start of Spring, already roasting here in Brisvegas!

I LOVE that the kids were to "tick" the birds as they spotted the cards, and Lolly drew an actual tick (as in, the little bug).  She'd just had a tick on her neck that week, so it was clearly topical.  ;)

Ticks :D

 To Sushi train, where kitty gets salmon.

More sushi train, in which Lolly is so grown up.

Sisters watching Bananas on the iPad.

All of the drawing.  

"Mummy and Lolly in a house with a sun and birds."

Making the most of an occasional cold August night at our fire pit.

Why yes, Lolly did toast a carrot over the fire as we had no marshmallows!  She ate two!

Sad neglected children get toasted carrot.

Snail is doing really well.  She had to have one of the hip pins out as it had come through her skin (!!) but recovered quickly and we are well into rehab. She is (as of a couple of weeks ago) back in her normal wheelchair, so it's goodbye to the reclining thing we spent 9 weeks in!  She's doing great at physio, and standing transfers are close in our future, which will make all our lives a lot easier, especially hers!  It's been a hard time, but the light is at the end of the tunnel. 

At one of our post-surgical appointments, around 8 weeks after surgery, at the hospital cafe, traveling in style!

Finally, girls with "pricklefoot" have to use their sister's reclining wheelchairs to recover. 

Home again.

Snail is back with us!  She's here for three weeks, then, if she's up to it, we'll be back to week about.  Transfers are a little hard to say the least at the moment!

We're nearly 4 weeks out from her surgery now, and we're getting there...slowly!  Snail still has a fair bit of pain, and isn't eating well.  Given that most of her meds are oral (don't ask about the others!) this is a fun time for all.  Still, she is getting better every day, which frankly is odd. 

Not that she would get better from surgery, of course she would.  Her health is basically good, and her immune system works a treat.  It's more the weirdness of her having something awful happen that will GET BETTER.  We're more used to "oh, that's the suckfullness that is her/our lives now, and we just have to wear it."  The CP, the intellectual disability, seizures that just get worse and worse and don't respond to meds well, then the hips, which have been gradually deteriorating for at least a year now (in the acute phase, longer really in terms of decreasing mobility and increasing pain).  So yeah, we don't really get things that GET BETTER.

This will, you know, get better.  She'll feel gradually better every day.  She'll get MORE movement and ability back instead of less.  She'll get LESS pain instead of more.  When it's all said and done, she'll be better off in a few months than she has been in years.  We might even get some mobility back, it's been ages since she could use her walker, or walk supported.  So, it's kind of awesome.  Though I'm not quite feeling it yet.  Cautiously awesome. 

We've got another nearly four weeks of splints and the foam wedge that holds her legs and hips in position, then hopefully after her follow-up appointment and x-ray we'll get more of a repreive and can move to just using them at night.  Then an intensive couple of weeks of physio at the hospital to get her used to moving again.  Then, back to school and regular physio.  Can't wait!!

So, that's my mildly coherent update.  And here are some shots of our various contraptions, which are numerous!  The recliner for relaxed telly watching that we borrowed from her Mum...

The reclining wheelchair, complete with bonus world's fattest cat and our new turtle tank :D

Snail and DinnerDad are camping out in the lounge because we can't get the enormous chair down our tiny hallway.  At least it's bright and sunny out there!

There's a hoist too, but apparently I haven't uploaded a pic.  Next time.  We haven't had to use it yet as the 2-person lift is working fine. 

Hospital time

So, this is what we've been doing the past few months...

As most of you know, Snail has cerebral palsy, and uses a wheelchair.  A lot of CP kids develop hip problems, mostly due to their lack of weight bearing in early development.  Your hips and femurs need walking and weight bearing to finish forming properly.  So a lot of kids with issues walking, and issues with muscle tone, end up with hip malformations which eventually leads to dislocations.

Which is just what happened to our Snail.

Over the past year, since an x-ray last August, we've known that Snail would need surgery.  Last August, her right hip was 40% subluxed (sitting incorrectly in the socket), early this year it was 80%.  A few weeks ago, we had a bad incident with her pain and when they did an x-ray at Emergency, her right hip was completely dislocated.

So, after living with that for several weeks, she had surgery 2 weeks ago.

Here is a simple link to what she had done.  She had a femoral varus derotation osteotomy on both sides (re-angling of the femoral head), and an acetabuloplasty on the hip socket (re-shaping the hip socket) on the right side.  Basically - it was an operation on both femurs, to reposition the head of the socket correctly, and to make sure her legs came out the same length after surgery (which is why they do the both sides at the same time).  She also had her right hip socket reconstructed into a more normal shape. 

It was, in the words of one of the registrars, a "big day out" in surgery.  One of her surgeons commented that it's pretty much the maximum amount of surgery they can do on a person, other than in a crash or something.  It was 4 hours, and took two surgeons. 

Towards the parent lounge, during surgery.

Surgery day was everything you might expect, horrible, torturous, awful.  And can I say there's nothing quite like having to spend the entire waiting time with your husband's ex-wife.  I'm sure she would say the same!  No way round it when we're all there waiting for Snail to get the awful thing done.

She looked AWFUL in recovery.  It was a shock.  You know that's what people are going to look like after surgery, but it's still horrible to see Snail go through it.  She was white as a sheet, with heaps of cords and lines everywhere.  She ended up having two transfusions.  For which we are so grateful for Australia's safe blood supply!  We're all going to donate blood in the next couple of weeks.  You should too: there are kids out there, like MY kid, who need it.

The first couple of days were predictably horrid, DinnerDad stayed at the hospital, I went up a lot as my Mum and Dad stayed a couple of days with Lolly (THANK YOU - you both rock!!).  She looked like death and was barely moving or awake.  She had a temperature, and part of her lung collapsed.  Both her legs are in these fabric splints, and hold a foam wedge in place so her hips can't move.  She had an epidural for four days.  They put a naso-gastric tube in as hospital and pain upset her eating and drinking, and she needed her regular oral epilepsy meds. So, you know, all that fun stuff.

By day four she was starting to perk up.  Truly amazing what our bodies can recover from, and so quickly.  She was more awake and interested in us all, and watching telly.  They got her chair organised, a reclining wheelchair as she can't sit at more than 45 degrees for several weeks.  We also have a hoist to do transfers, as she can't help with transfers and can't be moved much until 6 weeks afterwards.

This is day 4, trying out the reclining wheelchair and getting some sun!

Day 5 I think!  Watching Blue's Clues on her iPad and starting to look better!

The girls watching iPad telly :D

She went home after 8 days, back to her mothers for two weeks.  We'll do our catch up after that, and will have her here for a good while.  Can't wait, we miss her.

It's very strange to have a child go through this and not be with them (even if you aren't their "real" mother).  I feel for DinnerDad, it's been very hard on him not being with her, too.  Looking forward to having her here!!