Red Spot Day

Exactly one year ago today, we noticed little red spots on Max's face. I can't say much about that day, for legal reasons but I want to issue my own public health warning.

I've declared May 31st 'Red Spot Awareness Day'. A petechial rash looks like pin prick sized blood blisters. The telltale sign that a rash is petechial, is when it doesn't blanch (turn white) when pressed. If you can press a glass against the rash and still see the spots, it's petechial.

Petechial rashes must never be ignored. It is commonly associated with Meningococcal, Leukemia and (in Max's case) Severe Thrombocytopenia.

I hope that someone might read this and seek medical attention before it's too late. A few days after the rash emerged our little boy was on life support.





If only we'd known what we know now.


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June the 2nd

On June the 2nd, it will be exactly one year since Max's stroke. It was always going to be something I needed to write about, but it's been a bit harder than I thought. This is the fifth draft I've started. My original plan was to write about all the wonderful things we've achieved, the lessons I've learnt and people I've met. But somehow, that just seems too Pollyanna and perhaps not the entire truth.

The truth is, I don't know how I feel. I don't know how I've felt since June 2nd last year. I met a lot of people at RCH with stories so much worse than ours. Not a day goes by where I don't feel grateful for everything we have. I don't pity myself and I don't pity my son, because we're awesome. I stay strong, not because it's my only option but because I know how lucky we are.

Despite all of this, there's still something gnawing inside me as June 2nd approaches. It's a strange kind of grief & something I've mostly avoided acknowledging. How can you grieve for someone who's still alive? How can you admit to sadness when you have so much to be grateful for? Something was lost on June 2nd, I'm not exactly sure what it was but I know I'll never get it back.

I've stared at this page for hours, typed a few lines, deleted them and then stared again. Eventually, someone else found the words for me. The girls from the Childrens Hemiplegia and Stroke Association (CHASA) online group, have long been the best support I could've found. We share our highs, lows and everything in between. If I'm having a sad day, I can always post "It's not fair!!!! Why him???" and then be flooded with responses from people who 'get it'. The girls are mostly from the USA but I've also met some Aussie chicks and we're hoping to meet up later this year. It was Tiffany who left this comment as I struggled to find the right words......

"I get it. You lost something that day. It's a strange grief that only others who have stood there understand. For me it's July 1st, we had a baby and lost part of him. Although he is here, I grieve for that part of him that is gone.


Acknowledge that the grief and hurt is strong. It changed you, Max and your future. It's not a bad future, just a different one. It's a path with mountains, instead of hills, deep valleys instead of fields, dark caves and quicksand. No one would choose it but we end up on it. As we start to walk, we look up and see we are not alone, there are other people here. People who would have never chosen to be here either. They give us tools to survive the caves, hope to get out of the valleys and tips to defeat the trolls who try and stop us. They throw us a rope when we have a quicksand pity party.


You are not alone Faith and Max
M and I are here, along with many others"

Tiffani, you nailed it. Thank you.
June the 2nd is my September 11. It's a day where the fear was so intense, I stopped feeling all together. Something was lost that day, and despite the achievements that have since followed, I feel sad. I'll survive the day the same way I've survived the 365 days before it. I don't think I'll ever make peace with June 2nd, but that's ok.

Anyone wanting more information about CHASA can click on the link below
http://www.chasa.org/

Maxwell vs Therapy

Now that Max is walking and (so far) showing no sign that his leg is affected, I can focus our therapy primarily around his hand/arm functioning. I enjoyed taking a break from intensive therapy over the last few weeks and I needed it. Therapy with Max can be (almost) as frustrating as it is rewarding. He's stubborn, cheeky and quick to figure out his own way of doing things. I have no idea where he gets it from ;-)

Our OT sessions have always been a struggle for him. Part of this problem has been OTs giving him activities that are too hard. Sometimes, they're a few months wrong with their developmental milestones and that can be significant at Max's age. A few months ago, an OT told me I could teach Max to brush his hair by demonstrating it and then letting him have a go. So, that afternoon, I grabbed his brush and demonstrated "this is mummy brushing her hair, this is mummy brushing Max's hair". When it was his turn, he donked me on the head with the brush and toddled off.

Another problem, is Max's steadfast determination to find other ways of doing things. A few weeks ago the OT showed him how to pull some blocks apart. When it was Max's turn, he stared at the blocks for awhile and then bashed them on the table until they broke apart. Hilarious, but not the point baby.

Max is also very adapt at using his feet to do things. We have a toy letterbox, I hide things in it, hold down 'lefty' and make righty open it to get the 'treasure'. It was a great game for a few days until he figured out he could kick the letterbox over and release the treasure that way instead.




And then he smiles like this and tries to charm his way out of it

The hardest part for me, is summoning all my positive energy needed to motivate and encourage him. Positive encouragement spurs him on and works a treat but sometimes it's draining.

At the moment however, I'm pretty pleased to have figured out a system that works. One of our Snowdrop exercises is 'contrasting sensations'. I have lots of Tupperware containers full of different sensory activities (dry pasta comes in so many awesome shapes). I have rice, couscous, shredded coconut, slimy things, sticky things, fluffy things and cold things. I keep them in a place he can see them but not touch them, something so devilishly tempting for a one year old.




This one is fun. Bag of rice with 'treasure to find'




Slimy ball things




Max has to grab a few handfuls of frozen peas after each meal. Initially, he wasn't fazed by the cold sensation but now it's starting to annoy him. Success!

Every day, we do several short 'bursts' of constraint therapy. He has to grab a few handfuls of something and feel the different sensations, whilst I cheer him on. I mix it up as much as I can, so he doesn't get bored. The other day, righty made a HUGE mess playing with tiny bits of pasta. It was an awesome achievement for righty but I'll admit it was a slightly soul destroying mess to clean. It's getting colder now and raining a lot so we're doing more of this inside. Summer was great, we'd do stuff outside in different parks. We were the weirdos in the park playing with couscous.

The awesome thing is, that this system works and righty is showing improvement. I've learnt that doing activities in small 'bursts' maintains his interest, and keeps it manageable for us both. I've also learnt to only do therapy when I'm not already flustered and to seize the moments when he is motivated. I also do sneaky therapy while he's asleep such as massages and stretching he won't let me do otherwise.

I sneak therapy into day to day life and find myself doing things, that borders on what must look completely ridiculous to others. When we're out walking, I pick different leaves and flowers from people's gardens for him to 'inspect'. It's a great sensory activity, though he does look like the Bush Tucker Man sometimes.

When we're at the supermarket, I position his pram so that 'righty' is alongside something alluring so that he reaches for it. Things like crinkly chips, cat toys and 'red spot special' signs all get righty reaching and practicing his grasping. I know I'm setting myself up for future problems but right now, I couldn't care less. 'Mr Righty' could commit a brutal stabbing and I probably wouldn't mind (I'd possibly be proud).


Righty about to pull the pigs tail

We're also doing lots of work with his language development. Being proactive with this now, will hopefully prevent (or minimize) cognitive and learning problems down the track. We do flashcards, sign language and we're also learning animal names in Italian. We sing and have dance parties, where we both collapse in an exhausted heap by the end.







The improvements I'm seeing are phenomenal, but I need to keep the pressure up every day. It's all worthwhile though, for moments like this-





Um, you're meant to wait until after we sing Happy Birthday.





Dream big Maxwell. You can achieve anything.



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That's one small step for man.....

Guess what? Max can walk. He's been cruising for a few months, taking a few steps on his own here and there but now, he is actually walking. At the age of 13 months, which is spot on average.




Chasing ducks at the lake

So many people warned me that life would become more difficult once Max was walking. But you know what? It's complete bliss. It's one less thing to worry about on the therapy list. All the hard work we've done in developing his protective reflexes and vestibular confidence has paid off. He's walking and more importantly when he does fall, he falls like a pro.

The even better part, is that he has mainly taught himself. It's the first milestone I've been able to sit back and watch him practice all by himself. Every other milestone I have worked my butt off. Crawling in particular took 7 months of bootcamp style training to achieve.

A few weeks ago, one of our specialists let it slip that initially they thought Max's prognosis was poor. We've proved them wrong. The majority of the 'experts' take the 'wait and see' approach when it comes to brain injuries. I'm glad I never listened to them. By the time you've done the 'wait and see', the child has problems that can't be fixed.

Every day I am thankful for meeting our private physio Jess and NeuroDevelopmental therapist Andrew http://www.snowdrop.cc/
Without them, Max wouldn't have stood a chance at having a 'normal' life.

Last year, the hospital physiotherapist said she would see Max once he became 'more disabled'. Sweetheart, you will never see my son again.




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No Fight in the Dog

If you didn't already know, I've been lobbying to the Government to review the legislation pertaining to Carer Payments. The current assessment tool makes it virtually impossible for an infant with special needs to qualify. Only 100 infants per year, Australia wide qualify, leaving thousands of families struggling.

So far, I've raised awareness through the media and I've spoken to a representative of Jenny Macklin (Federal Minister for Disability Reform. I've sent emails to opposition ministers and independents. I've repeatedly emailed various departments of Carers Victoria. I've spoken with the Social Security Legal Service on a few occasions. I've appealed to the Social Security Appeals Tribunal and failed.

Early in this campaign, I was advised to make myself endearing to the Politicians. No swearing & no nasties. But a few weeks ago I finally let loose. I emailed Jenny Macklin and her useless henchman Peter McLean. I told them how disgraceful and disgusting they both were.

A few days later, I got an email from another of Jenny Macklins hench(wo)men. It was 2 and a half pages long and basically said 'too bad, so sad'.*

*This is not a direct quote

The Government see's no problem within the current system. The system was reviewed by lots of medical professionals and carers, so it must be ok. What bothers me the most is their arrogance and unwillingness to consider there might be a gap.

I fired back another email to Jenny Macklin and I didn't swear.

Meanwhile, I've appealed our case to the next level. I know that appeal will also be rejected because these tribunals don't have the power to change legislation. The only way that can happen is through the Federal Court & that comes next.

This battle stopped being about money a long time ago. It's about principle. But, to be honest, I'm tired of fighting. It shouldn't have to be this hard




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