Dancing Queen

Thanks to the organisational skills of our friend and old neighbor Shannon and her two gorgeous girls, Boo Boo and I went to a small Hi5 concert in a nearby suburb.

Boo Boo loved it and has been bitten by Hi5 fever again.

She asked to watch a Hi5 DVD on TV yesterday evening and jived away in her walking frame.

See?

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Sanskrit

There was a time that the idea of Beaver reading and writing seemed like an impossible dream.

Now, he's doing both. Slowly. At times haltingly. But he's doing it.

One of the quirks - or perks - of the school we chose to sent the kids to is that they learn Sanskrit. As regular readers know, the kids pray in Sanskrit, and have an annual school Sanskrit competition. Beaver does well in this, he was one of the finalists this year.

And now, have a look at this

It's the letter "a" in the Sanskrit alphabet.

Pretty good eh?

Fluffy

Susan, mother of Molly - you know us too well. You win. Now, what shall I give you as a prize?
Fluffy is a Burnese Boa (who had been fed before the photo session) and was remarkably soft (although not fluffy) to hold. If only you didn't have to feed snakes live mice, I'd consider getting one as a pet...

Ozzie Beauties

Over the holidays we ganged up with some family members and visited a nearby animal park, where we saw these beauties.

One big fat crocodile, one red-bellied black snake (the same ones as live under our pool) and a very friendly wallaby (so used to kids around that it didn't mind some patting from Boo Boo).

They had some nice reptile shows - the kids loved it. Beaver quietly stood on the side looking at it all, Possum sat on the fence (literally) and watched intently, but touched not a single animal. Their two cousins sat on the fence too, touching whatever they could, and volunteering to help a number of times (although to their big disappointment, they did not get chosen). I held up Boo Boo, who was very interested and keen to touch all the reptiles. One of the baby crocs was a bit aggro and kept biting the ranger's shoes - and Boo Boo pointed at her shoes and said "me!"

At the very end, only one of the children was game enough to pose for a photo with Fluffy. Any guesses which child, and what type of animal Fluffy was?

Have Wheels, will Attract Comments

We're taken Boo Boo out in her wheelchair a few times now, to the shops and to the park.

Mostly, people stare in wonderment at such a small child driving a mechanical device. I admit, she's tiny. And she's totally in control. it is awe-inspiring.

Quite a few people think she's cute, especially if she drives over to people's tables in a cafe to check out the food they have on their tables. She will smile one of her big grins at them , pointing and saying "yummy". A bit like a big eyed puppy dog that comes begging to your table.

Other kids are fascinated and find it hard to keep their fingers off the wheelchair. The joystick especially is very hard to resist for many kids. I don't mind too much if other kids touch it - Boo Boo is quite happy for them to have a feel. I think she enjoys being the centre of attention. If they fiddle with it too long, she sweeps their hands away and says loudly "bye bye". She' s perfectly capable of telling other kids when it's enough. Most of the parents, though, are mortified their kids touch the wheelchair. Probably fear it's contagious.

Mind you, if any adult dared touch her wheelchair controls like someone did with Moo over at Terrible Palsy, I will probably lynch them!

And of course, the stupid comments have started.

A favorite seems to be "what's wrong with her?". This one generally comes with some good old fashioned staring first before they pluck up the courage to come over and comment. My standard answer so far to this questions is "Nothing". This confuses people no end. Then they go "oh, but i mean, why does she need a wheelchair?" On my braver days, I simply answer "for the same reasons people need glasses". What is it with people, why do they feel the need to know our entire medical history. I'm not asking after their hemorrhoids, so why do they need to know a diagnosis?

Or how about this conversation:

- Hmm. Nice.
polite smile from me.
- How much does it cost?
- Seventeen thousand dollars.
- Whoa. That's expensive. Where did you buy it?
- Northcott Disability Services.
- Oh.
- Yes. It's not a toy
- Oh. Not a toy. Oh. It's very expensive.
- Yeah.

One of the best responses so far was from a pimply youth who works at a games shop in a nearby shopping centre. He watched Boo Boo flawlessly manoeuvre in a tight spot, her hand loosely on her joystick. Then he turned to me in awe and said "Man, she's going to be deadly with the games when she grows up". Yeah! I think she will.

Love

Boo Boo was in bed, I finished scratching Beavers' back, and now it was time to go and say goodnight to Possum.

Possum told me that he loved me very much. He said he loved me every day, and would love me every day in the future, even after he dies, and even after I die. He promised me that when I die, he will think of me every day. Even after he dies, and I have died, he will think of me every day. And if he comes back in his next life as a mosquito, he will think of his people-mamma every day.

Then he gave me "infinity kisses and hugs", and said "see you in the morning". Such a sensitive little soul.

This morning I had asked him to repeat something I hadn't heard (with the builder drilling outside and Boo Boo endlessly beeping the horn on her wheelchair). He got really cranky with me and told me off for "ruining his day by getting him to repeat what he said".

Isn't he a little gem?

Baby Driver

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My first ever attempt at video editing. Oh well, we all have to start somewhere...

Bottlebrush

Somewhere on a backyard terrace in Belgium, an Aussie bottlebrush is happily flowering.

Well done, Oma and Opa!

A Whole Lot of New Gear

This week was another biggie. Lots of things that have been long in planning came to fruition.

The ramp is pretty much finished, as is some cladding we had done to the house. Our builders have done a great job, and the ramp has actually lifted the whole look of the house from dowdy to inviting. Proof that accessible doesn not have to look bad!

This week also saw the arrival of Boo Boo's wheelchair (her "car" as she calls it) and our new car - the very first brand new car we ever owned. When I drove it home I wondered what the little digital display number 21 in the corner was - until it dawned on me that it was the Odometer. I've never had a car with only 21 kilometers on it!

To Boo Boo's delight we can now easily put her "car" in our car - and there is still plenty of space for the ramp, her pram, a little chair for her, and mamma's shopping.

We've had our first outing to the local shopping centre with Boo Boo (and off course, collected our first stupid comments from total strangers) who loved showing off her driving skills to all the shopkeepers we know. The 5 minute walk to the shops took us about an hour as Boo Boo had to drive into every driveway, check out every fence, letterbox, car, tree and what have you along the way. She was enjoying her new found freedom. I wasn't so pleased though. I had not had my morning coffee yet, and getting to Daeyong's cafe at the shops took way too long for my liking! Still, I tried to hold my tongue, not wanting to spoil the event for her (too much - I admit I'm pretty cranky without my morning coffee fix).

And today we went out to buy a portable foldable ramp to take the wheelchair in and out of the car. We're all set now - and considerably poorer - with all the gear in place! Watch our Sydney, here comes the wild'n weird bunch...

Some Holiday Snaps

Girls on the ferry to Manly

Boys on the ferry to Manly

Boo Boo loves the sand ...

... especially dropping it on Mamma's pants

Afternoon on Manly beach

Big Week - Thursday

Just to finish off last week - on Thursday, we went to TSC to trial a Mulholland Walkabout walking frame for Boo Boo.

As you can see from her face, she absolutely loved it.


We were lucky enough to take it home for 6 weeks. While it's probably not the best walker for her at the moment, it's a great way to get her into the spirit of walking, and strenghten her legs a bit more. Ideally she'd try a Hart Walker next, but she needs to grow a bit more first...

Anyway, on Friday morning, she chose her walker over her wheelchair, so the OT's worry that all Boo Boo wants to do now is drive around is only partially true - she does want to drive around all the time, but she's equally keen to give walking a go. It is as if the mobility of the wheelchair has given her a motivation to want to get up and walk.

Charlie

Let me quicky introduce you to our new family member: Charlie.

She is 5 years old, very tame (lived with a family before) and came to us on the spur of the moment (one of love at first sight).

Already, she is much loved. Beaver especially has appointed himself number one bird boy.

Big Week - Wednesday

On Wednesday, we had our first meeting with our new neurological team.

When we first took Beaver to the Rehabilitation team at the Physical Disability Clinic at Westmead Children's Hospital, the Dr. Adam Scheinberg made it quite clear that he was not sure we were looking at a "classical" case of CP (if there is such a thing). But for all intends and purposes, Beaver was presenting like CP, and so he gave us that official diagnosis (after we specifically asked for it) in order to access services.

In late 2005 life was getting a bit easier. We realised Beaver was a bit unusual from his peers with CP, and we felt we had a bit more "brain space" left to pursue the cause of his disability. Off we went to a neurologist, who examined the boy, ordered and MRI and spinal lumbar puncture, and a whole raft of blood tests (metabolism, thyroids, etc,) and told us that, according to her, we were dealing with a genetic issue, and we were lucky that Possum was unaffected. Well, that wasn't quite what we wanted to hear – as we had just found out that despite me having my tubes tied, we were expecting Boo Boo. Talk about a bombshell. Anyway, to cut a long story very short, around the 4 month mark, we realised Boo Boo had indeed the same condition as her older brother. And this provided us with some answers.

The fact that we have a boy and a girl with the condition - and the fact that a thorough investigation of Beaver threw up no obvious syndromes or diseases – tells us we're dealing with an autosomal recessive hereditary condition. Put simply, this means that Hubby and I have a fault on exactly the same spot on the same gene. We all have numerous little genetic faults that don't particularly bother us. Hubby and I are carriers for this disability our kids have, but since we only inherited the fault from one of our parents, it doesn't bother us. When we make babies, however, we have a one in four change that both of us pass it on to our kids and they are affected by it, a one in four change that neither of us pass it on, and a two in four chance that one of us carries it on and our kids are carriers.

So that's as far as we got. Then our neurologist left town, passed us on to another one, and a really famous one too. He saw us, suggested an MRI scan as a benchmark for Boo Boo, and that was that. We agreed to a scan, but never heard anything, never got a follow up report.

As we all know, so often in life it's who you know rather than what you know. Turns out our friends Blair and Enrico are friends with a top genetic neurologist, and they were appalled that we hadn't progressed any further. So they gave us a phone number, followed up with a message to the neurologist that we were friends – and we got to bypass the 6 months plus waiting list.

So on Wednesday, we met with Professor Kathy North and Dr. Richard Webster. It was a big day for us. Beaver was very anxious about it all, he's really come to the age where he wants to be left alone and hates it when others discuss him in terms for his disability. I get that. But it's one of those things in life he will be confronted with again and again and again. Of course, the first day after his bullying event wasn't too good for his fragile self-esteem, but what can you do. I wasn't going to cancel on an important appointment that takes months to get.

We talked about it quite extensively with him beforehand – he was very keen to know what they were going to do with him, and why they wanted to see him "because there is nothing wrong with me". But despite all our preparation, we completely forgot that they would want to weigh and measure him and take his blood pressure. What a palaver that was! All he had to do was stand or sit on a big scale (they cater for kids with a physical disability there), stand against the wall and sit in a chair. He steadfastly refused all three and sat, slack as a rag, on Daddy's lap! And that was only the pre-appointment check by the nurse!

Thankfully he settled down a bit after that, and managed to get through the actual examination with Kathy and Richard quite well (I love the Australian casualness, it so helps to reassure the kids!)

And their verdict, you ask?

Well. It’s definitely autosomal recessive. It's physical. And it's probably a protein or glycoprotein that's either not make or made in insufficient levels.

They seemed to think that the problem lies in the white matter of the brain. As wikipedia explains:

"The white matter is the tissue through which messages pass between different areas of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves, whereas the white matter represents the network cables connecting the computers together. The white matter is white because of the fatty substance (myelin) that surrounds the nerve fibers (axons). This myelin is found in almost all long nerve fibers, and acts as an electrical insulation. This is important because it allows the messages to pass quickly from place to place.

The brain in general (and especially a child's brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter."

In particular, they were putting their money on cytokines. Turning to wikipedia again

"Cytokines are a category of signaling proteins and glycoproteins that, like hormones and neurotransmitters, are used extensively in cellular communication."

This is fascinating information. It fits with our observations – Beaver has made progress in unexpected areas, which could be because his brain has found new pathways, He also responded remarkably well to glyconutrients (which produce glycoproteins ) so I wonder if there is a connection – and I've put him and Boo Boo back on them.

But is it useful? Well, no. Not yet.

Maybe one day, we can work our which gene holds the mistake, and which cytokines (or protein, if you like) is lacking. And then, we might be able to give that to the kids and reverse some of the damage. Maybe. One day.

For now, the team think we are very interesting case – isn't that nice to know. We do not need to get an MRI for Boo Boo, which is very nice (as it would need to be done under a general anaesthetics) since both kids have the same, and we have a baseline for Beaver. We might do another MRI, or a functional MRI and an MRS (a chemical analysis of the brain) when he is older and can do it without needing a general. They are looking for a research institute that specialises in autosomal recessive genetic disorders to further test us – apparently they are working on a linked DNA test (which should be available in the next five years or so) where all of us would give DNA and they would look for the differences, and then examine those more closely. This would spare us long (and expensive) individual DNA analysis in which we go for an endless fishing expedition because we don't know what we're looking for. Sounds logical to me.

And in the meantime, we continue with therapy – the doctors were very impressed with Boo Boo's ability with the power chair – and need to take Beaver back to Dr. Scheinberg at the Physical Disability Clinic to get his feet checked. His Achilles tendon is so tense that we're going to run into problems some time in the near future, and something (splinting, Botox, surgery) needs to be contemplated.

Oh dear.

Big Week - Tuesday

Tuesday was the last day of school for this term. It comes quite a bit earlier for our kids than most others, it's one of those quirks of the school we have to put up with – thankfully, it's more than compensated for by all the other positive things.

The boys were ready for a break, they were both getting very tired. After all, at 7 and 5, they are still just little boys in my eyes (but please please don't tell them that) and they need time off to play and muck around and do nothing.

So both the boys were very much looking forward to their last day. Unfortunately, it didn't go too well for Beaver.

At about two thirty that afternoon, Beaver's class teacher rang me. There had been an incident at school, and she wanted to brief me on it before she packed up for the day, for the holidays, and to fly to South Africa the next day to visit her dying father.

During lunch time play, Beaver had been pushed down by one of his class mates and two younger kids from the kindy class (i.e. Possum's class). Then, every time Beaver tried to get up, they pushed him down again, and again. When Beaver started crying, they kept going. At one point, one of the children pushed Beaver's play hat into his face, pushing his head into the gravel. By then, the supervising teacher came running down, and pulled the whole lot apart.

The children all got a serious talking to there and then, and then another one by the deputy head (a lady they all respect highly). They were told this was a very serious incident, and the school was going to ring their parents to inform them of their behaviour. Then, the two classes involved got a serious bollocking, not only about the behaviour but also all the other children were chastised about not intervening earlier; stressing the point that not acting to help is just as bad. And then the teacher called me to let me know about it all.

About ten minutes later, I received the first phone call from the parents of the children. They were devastated and very apologetic. I told them it was ok. Some of them wanted to bring their kids over in the holidays to come and apologise again. I didn't think that was necessary – as far as I am concerned, the school dealt with it swiftly, and dealt with it appropriately.

Possum and Beaver do this at home quite often, where mainly Possum jumps on top of Beaver, and then they have a good old rumble. Possum learned when to stop after one day Beaver (with our explicit permission) jumped on top of Possum and showed him who is the older and stronger boy. So I'm not surprised this happened. I am fairly confident that the whole thing started out as a perfectly fun game that went to far. And this is what growing up is all about – kids need to learn where the boundaries lie. When someone is clearly weaker (i.e. not able to get up) or upset (crying) they need to stop. And pushing someone's head in the gravel is definitely mean.

But kids are kids. They do these things. And then they learn it's not OK.

Doing these things does not mean they are bad kids. Doing these things does not mean they have bad parents.

What happened is not OK. But it's normal. And it's a good learning experience. For the kids, and for Beaver.

This does not mean that I'm happy it happened. Or that I wasn't upset it happened. It does not mean that I did not quietly have a little cry in bed that night.

It saddens me that Beaver was pestered like this. It saddens me that he did not know how to respond to it. I think any parent would feel that way.

But it did make me realise that I need to teach Beaver some survival strategies. Because, let's face it, this sort of thing is going to happen again. He will always be an easy target. And this is just the physical side of things. On a daily basis, Beaver is aware that he's not one of the guys. There are minute little moments every day that he is excluded. It's part of Beaver's life, and it will always be. So as a parent, I need to teach him how to cope. We've got a martial arts place up the road, and I'm going to have a chat with the Sensei about maybe some one-on-one basic survival techniques.

And for those who are wondering – Possum was blissfully unaware of the whole thing, playing soccer with his mates at the other end of the playground. He told me that he was the one who went and got the teacher, but I think that's wishful thinking (after the talk from the teacher about the need to act) as two independent sources tell me he was nowhere near the incident.

And Beaver – how did he deal with it all?

I said nothing at first when he came home from school. I asked him how his day was, and he said "ok" and went off. Half an hour later he still had not said anything, so I called him aside and told him his teacher had called me about what happened that day at lunch play, and would he like to tell me what happened. To which he responded "oh, yeah, I got bullied today" and went off. He tried very hard to pretend nothing had happened, but I kept bringing it up, since I wanted him to know that the school took the incident very seriously, so that he felt safe and school. Then, over the next few hours the whole story came out. And then it became his favourite thing to tell people for a few days, And then, it settled down – he is currently obsessed with the plot and various sub-plots of the movie Curious George, and who does which voice. But it's still there. Yesterday, out of the blue, he told me he still the boy from his class who was involved is still his friend.

Hmmm. Just another day in the life of rollercoaster parting.