Wednesday, March 30, 2011

Birthdays, and turning 3! The Belated Catch Up Post.


Lolly turned 3, and yes, it was a "I can't believe she's 3" kinda moment for me (because birthdays are all about me, don't ya know?).  This post is a late one, I've had some stuff on lately, and hadn't put the photos in yet.

We had presents when DinnerDad got home from work.


Lolly got even more dinosaurs, I just love that she took them out of the pack and used the t-rex to wreak havoc.
Mummy!  This T-Rex dinosaur is killing this other dinosaur!
Me... "!!" 

Lolly got...what could it be?


Prepare yourselves, this shot has ME in it!  Okay, so she didn't get ME for her birthday, it's the bike.  And a Dora helmet.  And no, we weren't just too lazy to put it together before present time, we thought that the building would be a big part of the fun for her, and it was. 


This shot turned out tellingly.  Snail is still while the family move around her.


Favourite dinner and Dora ice cream cake for dinner.  Or rather, an icecream cake I bought at the shop, and stuck a pre-made bit of Dora icing on it.  Yeah, I'm like friggin Martha Stewart here.


Happy birthday to my Lolly.  Thanks for changing my life so fabulously!  I love you!
ROAR!

Tuesday, March 29, 2011

My day

Okay, so I couldn't sleep last night (or tonight damn it!) and was up til 3am.  At 7am, DinnerDad had to drop the boys off early at the train, so got me up to deal with the insurance assessor from this little gem, our bathroom ceiling you may remember from this post:







Hell, at least I finally sorted something out about it, I guess I can move it off my Things I Let Slide list?  So anyhoo, I'm up, after a refreshing four hours sleep, have a short break before Lolly is up and at 'em (this was basically the good bit of my day).  I've got Snail home due to the 14 seizures she's had since Friday, she's wasted and I'm pretty sure having smaller seizures most of the night. 

The next paragraph contains lots of bodily functions.  Just sayin', in case you wanted to look away for a bit, maybe imagine some ponies.

Everyone is up late (not me, no sleep for me, no way hahahahaahahaahhaaa *manic laughter trailing off into insanity*), nappy change time.  I rip the first clean nappy (damn those soft fabric-y sides of the discrete pullups we get for Snail!), go get a second.  Can't find pants as ALL the washing is back in the baskets of doom, clean, but forever sentenced to stay in giant piles in my study.  Find pants after much cursing and rummaging and mess.  Change Lolly, too (I really hope toilet learning is close on the horizon for Lolly!!).  Shortly afterwards have to change Snail poop.  Ten minutes later, Snail's ever so recently clean nappy explosively leaks pee all over my new carpet.  Clean up pee, change Snail AGAIN.  This is her third pair of pants and she's only been up for about half an hour!  10 minutes later, have to change Lolly poop.  Sigh to myself and have small over it all moment.  As I reach maximum "sorry for myself, woe is me," Snail promptly has another seizure, rather considerately after her morning meds but before breakfast (which has been somewhat delayed due to all the nappies heretofore mentioned).  Snail passes out on the floor.  Lolly and I try to go about our day, can't go anywhere as Snail is too floppy and unconscious, that's cool, have a home day.  10 minutes in to the fifth *awesome* kid activity I really, truly, deeply, wish that I had had more than 4 hours sleep. 

Snail sits up.  Get her into her chair, rush breakfast into her.  It's 1pm, but hey, so what, it's not like the breakfast police are on patrol. *looks round nervously*  At the end of breakfast, Snail has another seizure.  Transfer her out of the chair onto the couch and put on TV.  Lolly remains interested in TV for 3, 2, 1...about that long.  Snail asleep crosslegged in a little ball on couch. 

I spend the rest of the day doing calls to CP and epilepsy service providers as we've been meaning to get reassessments on stuff, more therapy, and new orthotics, as well as another EEG and hip assessment.  Anyone who has had to make bunches of these calls knows just how awesome they are.  "Hi, my kid's really disabled.  Yup!  Disabled enough to get on that program you have to be really disabled to get on.  Sure, we can fill out ALL the forms.  Sure we can get our GP to sign that in triplicate with unicorn blood and fax it to three different government agencies so you can start to begin to maybe put us on a list of people who might get considered for mention at a meeting you're having next June for funding.  No worries! Thanks for that, I just love talking about it.  No, that isn't a dying parrot, it's my three year old demanding fizzy water and corn chips, but thanks for caring!" 

Get put on numerous waiting lists.  Curse stupid lack of funds for essential services.  Lolly spends this awesome time yelling instructions at me, asking for stuff, or crying.  [Disclaimer, without fail, everyone I talked to today was lovely, sympathetic, and helpful.  It's not their fault that they have no money, staff, or much flexibility.  These are some seriously awesome peeps doing a friggin hard job.  They rock.]

From here.
My dishwasher broke last night.  Oh yeah.  Discover we have extended warranty that is still current.  Do happy dance.  Call.  No service providers for that brand in the whole friggin city and surrounds.  Woman on phone suggests I may have to load the dishwasher in my car and drive it to the registered service provider, some 2 hours from where I live.  Yup, she was serious.  I pull out the big guns, "I have three kids, one is in a wheelchair, and one is three.  I am just NOT DOING THAT."  I happen to mention that I had a google search in front of me, and there is a service company about 10 minutes from my house, and why the fuck can't they do it?  But nicer.  And I didn't say fuck.  [I'm pretty sure].  She calls the company and they are "getting back to me." Not her fault, but still...seriously!!??  Oh, and no one got back to me. 

Day continues, DinnerDad thought he could manage a work from home afternoon, but couldn't, gets home relatively early, we try to sort a feindishly complicated plan for me to get a break this weekend.  This is how:  I'm going to fly self and smallest kid to Melbourne, driving to for 2 and a half hours in a hire car, to staying in a caravan park near my MUM (she's capitalised due to pure AWESOMENESS) - my parents are away on a big trip and aren't back til July and WE MISS THEM!!  My MUM loves Lolly, and the feeling is totally mutual (Lolly has been pretty sure that every time we get in our car since Mum left, that we are going to see NANNA!  She is often disappointed) and I figure I will get a couple of hours off to sit quietly by myself.  That's pretty much the extent of my ambitions these days.  Quiet alone sitting.  Bliss. 
Lolly and Nanna last time we went "caravan-ing" with them!
Oh and I had forgotten that I was booked to do a parent information session at the Montessori School tonight at 6.30pm, and you have to have done it before your kid can start, so I had to go, nearly fell asleep on the drive there, (the session was just awesome, so that was a good bit of today), drive home at 9pm (about an hour after I thought, and having heard the yodels of upset down the phone from Lolster), get home, get jumped on by the kid, get her to sleep at 10.15, do every bit of fucking washing up in the friggin known universe, I kid you not, it took me an HOUR to wash up!!! Next time I'm gunna do this, but to the dishes. With that same slightly crazed expression on my face.  But with considerably more waist.


You know, this day reminds me of another day I wrote about here.  It had poo in it, too. 

So, how was your day?

Monday, March 28, 2011

Birthdays, or: For the Girl

It was Snail's birthday on Saturday, she turned 12.  This was a birthday that made me reflect that perhaps the meaning of being a parent is holding in the part of you that wants to run into the bedroom and cry, but instead stays, sitting, holding the hand of the girl while she has another massive seizure.  Okay, some tears may have come out afterwards (sorry, family!).  But mostly they stayed in.  They were tears for her, anyway.  For the girl.

Twelfth birthdays shouldn't be about this stuff, the quiet moments in the aisle of the toy store because here you are again, in the toddler and baby section, looking for something that is easy to operate and might provide some therapuetic value, thinking about cause and effect, fine and gross motor, sensory integration.  They shouldn't be about worrying that you won't get the meds into the girl because she seized 5 times yesterday and again before breakfast.  Or that you didn't have the adaptive switch for her bubble machine after all, and had to order another one and it came in time but kinda made you cry because you were both happy and sad:  happy it came and sad beyond any words that this was the present you were so excited about getting her.   Birthdays shouldn't be about about whether you should have presents on the floor or in the wheelchair.  Or about how long after getting the presents would she go before having another massive seizure and then spending the rest of the day unconscious.  Again.  Only to do it all again the following day at her sister's third birthday party.

Oh yeah, this weekend was fucking hard. 

We love you, Snail.  You are a spark of joy in our hearts.  You are a laugh on our lips.  You are a "cug" of love, and excited squeals of joy, and resting your head on my leg, and squishing my hand, and being lit up inside with wonder.  You are the girl.  I just wish, I wish so very very hard, for all of us, but most, most, most of all for YOU, that you were a normal girl. 

And I wish that your twelfth birthday didn't include the recovery position.  Some days, things are definitely not okay.  This was one of them.

Wednesday, March 23, 2011

Adventure - Day the Third, and Homeward Bound...

Yesterday, Lolly and I took ourselves off downstairs for a snack before attacking our day out.  At first we were a little tired.
No photos, please.
But coffee perked us up no end (if anyone is panicking, it's milk only in hers :p).


We went to a bookshop, found me some books, and played on a train they had in the kids section, then walked down to the Quay to see the Sydney Aquarium.  Well, one of us walked, the other was carried in her stroller.  The Aquarium is a great spot to take young kids, Lolly loved it 6 months ago, and loved it even more yesterday!  It's mostly indoors, air conditioned, and very engaging for the younger customer.  It's pricey.  Lolly is still free, but it did cost me the princely sum of $35 dollars for the privilege.  But Lolly thought it was awesome.


Here's a dugong.  Why these things are known as the inspiration for mermaids luring sailors to their horny undersea deaths, I'm not too sure.  Sexeh?


There were heaps of these huge and elaborate Lego sculptures throughout, they were truly impressive.  I took lots of shots as DinnerDad was quite the Lego lad himself in his youth.  Here is the Moby Dick sculpture, which has a massive mural behind it, also made of lego.  Impressive stuff!  That's Lolly, the curly blur at the bottom left.


Moby Dick
Little lego peices.
I wish I'd taken my good camera (which came to Sydney but sat in the hotel room feeling lonely, I am a little out of the habit, but also admit that sometimes it's just a hassle to lug another bag around, with my regular bag of holding, the kid, and the stroller).  Anyway, the quality of the light in the shark undersea tunnel was truly beautiful.  The iPod camera struggles to capture it, but hints at how otherworldly it was, green and blue with those fingers of sunlight, extraordinary.


Lolly enjoyed going through these tunnels, and marvelled at everything she could see, from the biggest shark to the smallest fish. 

This starfish looks kinda drunken to me!
After we'd admired our fill of sea life, we went off for a bite to eat, and walked back up to the city, accidentally through this lovely garden in the middle of swish office buildings.  We had to go explore the fountains, flowers, and bugs.


After a break in our room, we popped back down to the bar for coffee and chips.  Lolly peruses the menu.

We had dinner at a fabulous French restaurant with DinnerDad (no photos!).  This morning we were up and off straight away, to train and plane it home again.  We picked up Pippin from her super luxe holiday resort for dogs (where she apparently had a great time), and made it home again!

Lolly was glad to be back, and spent a lot of time running around madly enjoying the space. 
Running with Pippin.
She also spent a good half hour playing intently with sticky tape, a soccer ball, and some ribbon to make this masterpeice. 


Some ribbons attached to her knees completed the look.


She's out like a light now, and we had a great time on our impromptu trip to Sydney.  Smash was back this afternoon, and we've got a day off before Snail is back - lucky as there are birthday happenings this weekend to prepare for!  Snail is 12 on Saturday, and it's Lolly's birthday party on Sunday!!  I promise to get the good camera out for all that birthday fun.

Tuesday, March 22, 2011

Adventures, Part the Second

Today we went to the Australian Museum to meet with some ace friends, and explore!  Lolly LOVES this stuff, dinosaurs, bugs, skeletons, fossils, animals, anything she can investigate, she is THERE!


Digging up dinosaur bones at an interactive display.  She loved this activity so much, and so little wanted to leave it, that I'm going to have a go at making something like this for her at home, with our half-shell sandpit and some toys.


There is a simply wonderful area at the Museum called Search and Discover, which is filled with Museum artefacts that kids (and adults!) can handle and explore, cases of bugs and insects, live frogs, stick insects, lizards and spiders, books, computers, and comfy lounges for tired parents.  It's basically fabulous.  Lolly spent HOURS there exploring, by herself and with her friends.  Here, she is looking at insect cases, this was fascinating, and she had to open every case to look inside.


Standing on a giant vertabre and holding a bone (there's a large collection of bones and skulls).

I love the "who me!" face on this shot!
Hopping under the giant turtle shell.
Lolly in a half shell!
Looking at a collection of eggs and bird wings.

Learning how to use the mouse on the computer.  Lolly can use an iPad with ease, and we'd never introduced the mouse to her to use.  I'd just been saying to DinnerDad that we should spend some time with her teaching her this skill!  Give her an egg collecting game and a baby jaguar, she's taught herself in a few minutes!
Learning to use a mouse!
The super-cute Crucifix Frogs, these are tiny, brightly coloured frogs that are just too adorable, they were a favourite!
The frog is the tiny thing in the left of the picture.
She spotted this emu egg on a desk, and in a moment of adorable-ness, had to give it a snuggle!

OMG!  An EGG!!!!

"Awww, what a cute little egg, it might hatch!"
All in all, a great day!  Lolly had a blast, we met up with some Sydney friends, and we'll all sleep well tonight!
[again, a day behind, these were our Monday adventures!]

Monday, March 21, 2011

Adventure!

We had an unexpected trip to Sydney, partly thanks to DinnerDad's work!  The other kiddos are with their mother this week (and Smash is doing an extra night or two so I could come too, thanks Smash!), so we flew down yesterday, here is gorgeous features on the plane....  She's a good traveller, got a little whingy at the tail end, but that was due to our early start and her mere 8 hours sleep the night before. 


She loves our "little home" (hotel room) and is having a fabulous time being out and about in the city.  We had a swish dinner at the hotel last night, and today it was ALL the bacon for breakfast (Lolly is fan), then off to the Powerhouse Museum for much exploring and adventures.



Slightly tired on the way back, DinnerDad iThinged in the hotel bar with coffee while Lolly slept.  Worth every hour I'll be up tonight with awake-features!  I'm loving the new stroller I got on Friday!  It was cheap, and is actually tall enough for me, at last!  Lolly walks heaps, but on long distances, you still need a stroller, not to mention:


Pizza for dinner down at the Rocks, I love these (phone) shots of her and her Dad holding hands and running down the city streets.  Her joy was just a wonder to see.


She demanded, apropos of nothing, that she get soup for dinner (??!) and polished off most of a bowl of minestrone!  We had a rainy-windy walk back to "little home" and resting.


Tomorrow, DinnerDad is forced to work for our suppers, but Lolly and I are off to the Australian Museum with a friend!  Huzzah for last minute, mostly work paid for, impromptu holidays!  Huzzah!

[this post is a day behind, ah well!]

Friday, March 18, 2011

Pediatric Neurologists, being "normal," and Cthulhu. One of these things is not like the others...

As one does...

We're booking in to do another series of EEGs to try and see if Snail's zombie-ness is from seizures or not.  If we don't catch anything, there's a chance it might be from her medications, or the combination of medications, so perhaps further (and probably endless) fiddling with them may help.

Snail has been really bright and happy this week, far more chatty, and more demanding, which I am happy to see as it means she's more herself.  She protests things a little more, requests things more forcefully, it always makes DinnerDad and I smile.  Squeals of frustration are happy sounds round here!  Guess it's all a matter of perspective, as the same thing out of Lolly can frustrate me no end and cause rather a lot of eye rolling.  It used to be the same for Snail, too, until she gradually lost those more decisive parts of herself, the bits that get annoyed, that REALLY want something NOW, that crack a shit if we change the TV from a never ending loop of Blue's Clues, even those bits that used to have a screaming tanty if I left the room to say, pee (that's me, ever the selfish stepmother, forgot to pack my bladder of holding).

Trust me, you DO miss those things if they stop.  It makes me (when I'm particularly zen and mindful, so yeah, once a year or so) feel just unbelievably happy about a screaming toddler tantrum from Lolly.  It's just so normal.  Normal can bring many a tear to your eye.  Normal rocks.

Well, that went sideways an in some cheery directions.  Here's something funny to distract you: keen observers with freakish memories may notice I posted this in 2009.  It's funny though so here it is, reprised, apropos of nothing:

Thursday, March 17, 2011

Three!!!

My girl is three today.  Birthday pics and pressie pics tomorrow.  I can't quite believe she's three! (Doesn't every parent say that?!).


Here are some previous posts marking Lolly-shaped birthdays:

One!

Two!!

Wednesday, March 16, 2011

Cycle One and the end of an era?

Lolly has been (sporadically) going to Nido for about a year now.  We don't get there regularly, for one reason or another, but she sure does love it when we do go.  But, this year, we've been having more issues there.  It's not Lolly, she still loves it!  It's the Lolly/Me dynamic.

Nido at the Montessori School we go to is teacher and parent facilitated, and you go to the sessions with your child.  It's for 18 months to 3 years, and they also run an infant program from 0 - 18 months.  It's a beautiful environment, and the teachers are wonderful, so helpful and full of Montessori and developmental knowledge.

The couple of times we have made it this year (we had good intentions, but were sick for nearly 3 weeks this terms with the American plague!), Lolly has been concentrating more on exploring her boundaries with me, than with the environment at Nido.  Cleaning up the work you have just done is central to how the environment works, and Lolly just doesn't want to do it, if I ask her.  This is not about not wanting to clean (she loves cleaning normally!), it seemed to be about testing my limits and her independence, about a power struggle between her and I, than about the task at hand.  I really felt I was getting in her way in the environment, that it was distracting to her to have to deal with me!  She wanted to hide from me, and spent a bit of time running around trying to get me to "chase" her. 

She also seems kind of bored with the material, not all of it, but I felt she was looking for more challenging work to do.  She chose mostly "play" activities, and passed over the puzzles, beading and matching as if to say "I can do that!".

I thought nothing could convince me to have Lolly go to cycle one at 3.  I felt it was too young to be away from me, that we did too much together, and that she just wouldn't be ready for that much separation until 4 or 5.  It has been the major drawback for Montessori education in my mind.

The beautiful outdoor space at Nido.
Until she got to 3.  At Nido, I could just see her wanting more, and more importantly for my side of things, being ready for me NOT to be there, *sob!*  So, at the end of our session last week, I went over to the office to start the ball rolling for her to start cycle one.  I feel very conflicted about it, but my worries have been outweighed by wanting to try the benefits.

As we start, I'm looking at her doing 3 mornings a week of the 5 expected.  You have to pay the full fees, but we're willing to wear that to get a balance that suits our family.  I still think that time with me, and time doing our normal activities with friends or just hanging out is very important at 3.  I'm going to take my cues from Lolly (and me) before moving to every day of the week.  They go from 9 til 12, and there is a parent's room on the campus I'll stay in (expect many blog posts, I'll have time to write them!).  At first they start with an hour to two and build up, taking our cues from Lolly and how she's adjusting.

Now all we need to do is be offered a place!  This is big stuff for me, I'm feeling a bit unsure, but the majority of me feels she will love it and thrive.  If it doesn't work that way, we'll reassess it.  Nothing is set in stone.  See me reassure myself?  :D

Saturday, March 12, 2011

On Epilepsy

Our Snail is pretty hard done by, thanks universe.  It's not like she wasn't already unable to walk unaided, can't dress herself, is incontinent, is intellectually disabled, and has athetoid cerebral palsy to go with her pachygyria.  Oh no, that's not quite enough, thanks!  If you like, we can add in epilepsy to that charming mix.

Snail started having seizures when she was five, in a scary way.  Okay, I'm not actually sure there is a non-scary way to start having seizures.  So let's just say, in the regular old scary seizure way. She had three seizures one day and stopped breathing, thankfully only for a minute or so, then she came right out of it.  She had another one at the emergency room.  It was pretty clear after that, and an EEG, that she was having epileptic seizures.

Seizures are common in pachygyria, because of the malformations in the brain.  I remember reading on one medical site that pachygyria kids commonly had "intractable epilepsy."  Needless to say, that's not fabulous.  It means the seizures responds poorly to medication.

At first there weren't many.  She started out on Epilim, in liquid form, which we had to resort to many and varied tricks to get her to take!  Icecream and weet-bix were the favourites.

Little cutie having Epilim on her morning Weet Bix, 2006.
Her seizures were infrequent, and isolated.  The rest of the time she was how she normally seemed.  Here is one of the first videos we were taking, this is April, 2006.  It shows what we called the "jerky" seizures she would get. 

video

We'd take footage to show specialists, you can see here both the characteristic "writhing" of athetoid CP, and the jerky seizures that were the ones we saw most often at this stage.  Also here you can see I am feeding her, despite the fact she mostly she fed herself.  One of our other videos of that day actually shows her trying to hold the spoon, we were taking it as evidence she couldn't do it anymore!  She hardly feeds herself now, she seems far less coordinated than she was at 5 or 6.  Seizures at this stage were most commonly complex partial, or absence seizures.  She also had atonic seizures, like the first ones she had.

Slumped in her chair after a seizure at the beach
By age 7, seizures were more frequent.  She started getting  tonic clonic seizures, which scared us shitless at first. 

By age 9, seizures were taking over.  Her medications were increased.  First Frisium, then Topamax on top of the Epilim.

Now, she gets around a day a week with tonic clonic seizures, usually she has three or four over several hours, and sleeps/is unconscious in between them.  This will knock her around for a day or two afterwards, and often we have to go to hospital to administer midazolam.  She has had at least 7 admissions over the past year.  Sometimes they are overnight.

Snail also has many, many complex partial, absence, and, we think, myoclonic seizures (hard to pick as she has CP), she also gets tonic seizures sometimes that don't progress to the convulsion stage.


Blurry shot here, this is Snail getting up after lying down after a seizure, "helped" by her sister, Lolly, who just had to lie down too!  When Snail has a seizure, Lolly is darling and fetches her blankets and pillows.


Our poor Snail has just gradually lost herself.  Between the various seizures and the drugs, she became either like a zombie, with a glassy stare, not caring, or so slow and far from the bright cheerful child she was.  We have felt for years that what little she had was slowly whittled away.

We used to read together, play games, pick between two options, use our communication device, walk with some strength, get grumpy and demanding.  Now she isn't interested, the vast majority of the time.  Our girl has been stolen by the storms in her brain.  We might get a good day, or two, a week, and even then her capabilites aren't what they were when she was 5 and 6.

And we don't know what we can do about it.  Not until she is through puberty.  She has what's called intractable epilepsy.  Medications are unlikely to fix it, chances of being helped by meds decrease with each different type tried.

It sucks.