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.


- Posted using BlogPress from my iPhone

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.



Posted using BlogPress from my iPhone

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.




- Posted using BlogPress from my iPhone

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




- Posted using BlogPress from my iPhone

Farewell Princess Malli

In November, 2002, I'd just finished my University Degrees, moved out of home and was about to start my first full-time job. I was 22, I had the world at my feet and I knew everything.

One day I went to the shopping centre to buy myself a bed, but instead, I came home with a puppy. I'd wandered through the pet shop and fallen instantly in love with her. She was half malamute, half Rottweiler and she was only 8 weeks old. The staff at the shop, called her 'The Malli' and the name kinda stuck. I walked out of the shop beaming and cuddling her in my arms. It was the stupidest, most impulsive decision I've probably ever made but one, I've never regretted.





I learnt pretty quickly that Malamutes are....well....kinda totally nuts. Malli destroyed everything, she pooped on everything and she jumped on everyone. In less than a week, my new housemates asked us both to leave.

We moved into our first proper rental home, me, Malli and the new(ish) boyfriend. It was the perfect house for an ever-growing, kinda psycho large breed dog.....a 2 bedroom townhouse with a small courtyard.

To make up for the shitty lack of space, I took Malli everywhere and when I had to leave her at home she was allowed to roam the entire house. Her favourite place of all was our balcony. She loved socializing with the people walking past, she'd drag various bits of 'treasure' outside and drop it down to them as gifts (stuffed toys= ok, giant bones= kinda scary, a vibrator= um?)

The even bigger mistake though, was moving in with new(ish) boyfriend, who quickly revealed himself to be a big(ish) dickhead. I don't know how many times Malli and I huddled up together in the bedroom, waiting for him to finish destroying the house. It was one of the lowest points of my life & it would take me over 2 years to find the courage to leave.

Those would be the only times in the early days, when that giant, fluffy psycho dog would sit calmly. I'd cry, feeling like the loneliest person on earth and she'd put her big fluffy head on my lap. I don't know how many times I nuzzled into that fur and howled. She was the only one who knew how miserable life really was.

I don't think anyone could ever quite figure out why I put up with Malli. Her sense of adventure was a constant (and expensive) headache. She went through a stage where she escaped so many times, the pound had me on speed dial. A few times, she barged open neighbors doors and joined them at their dinner table. She jumped in a neighbors pool, she 'played' with another neighbors guinea pig and almost caused a few car accidents. She was a terror but she was my terror.

I went to Sydney one weekend and my housemate made a batch of hash cookies. They were reportedly so strong that one cookie rendered them too stoned to notice Malli polishing off the rest of the tray. Malli spent a night in ICU and had the munchies for a week (I was not impressed).


Over the last month, we have been backwards and forth from the Vet because Malli had something up her nose. The diagnosis changed so many times from (1) innocuous grass seed, and (2) Cancer. She had a few minor surgeries, and after one, she deteriorated rapidly. Last Friday, she stared at me with an expression that I'd never seen from her before. She was telling me that it was almost time to say goodbye. At that moment, I knew I didn't need a second opinion.

My last duty to her was to make sure that she didn't suffer and abandon my selfish need to save her life at all costs. So last Sunday, I said goodbye to my crazy, lovable furball. The last thing she did was lay her head in my arms and close her eyes. For one last time, I nuzzled into her big fluffy head and when she closed her eyes, I cried.

Rest in Peace my Malli Princess.
Thank you for being there when no one else could. You are gone but you will never be forgotten.





Malli
2002-2012

This one's for the Daddies

I feel like taking a break from the usual blogging stuff, to do a random parenting post. I've written about the first few weeks of parenthood before (*if I knew how, I'd insert link here______*) but this one is especially for the first time daddies. Enjoy.

- be extremely careful about the jokes you make to the mummy. They may seem funny to you and under usual circumstances, the mummy might find them funny BUT.....we're exhausted, our 'bits' hurt (or Caesar wounds), it hurts when we poo and we're leaking fluid from every orifice. The hormones we had when we were pregnant have gone and they've been replaced by new, highly anxious and obsessional ones. When the baby cries, it makes us unbearably anxious and we are powerless against it. When the baby isn't crying, we're anxious about the next time the baby starts crying. We can't help it, it's what our bodies were programmed to do & we will calm down. As a general rule, "when in doubt, don't say it". Now let's see if you're still paying attention. Boobies.

- If you're like the majority of blokes, you won't have read a single parenting book during the pregnancy (skimming through it doesn't count). If this is the case, then please, "Shut the f*ck up". We aren't experts but we've probably educated ourselves a bit more on the topic then you have. We have the final say and you must go along with it. End of story. Are you still reading or are you skimming? Tittie fart.

- It is highly unlikely that we want to hear your mothers opinion, so don't share it. It may be gospel to you but it isn't for us. Nor do we give a shit about "Jason from works missus" or some parenting story you saw on TV. If you notice this one, then you must be actually paying attention. Giant norgs. Furthermore, if you want to continue breathing, never ever compare us to another mother, unless you're saying we are better.

- 'doing nothing time' no longer exists. We appreciate that it'd be really nice to come home from your place of employment and pop your feet up in front of the TV. That was in the good ol' days before baby, not now. You see, we've also been working all day, we don't often get a break and we are probably covered in baby puke. It's unlikely that we've showered, eaten or pooed. We're emotionally drained, our bodies hurt and we're deprived of sleep. We resent you, for spending the day away and having simple luxuries like an uninterrupted lunch, even though we don't wanna trade places. If you're still reading this, I'm impressed. Doodle doodle ball bag.

- Sex. We don't want it right now, it's the furthest thing from our minds. Imagine that a tiny balloon was inserted in the tip of your penis. Imagining it? Good. Now imagine this balloon being inflated to the size of our baby and tearing your penis to shreads. Ooh. That sounds nice doesn't it? You'd be scared to pee now wouldn't you?* You will have sex again and you won't die in the meantime. Instead, you can stroke our hair, rub our necks and tell us we're awesome. It'll improve your chances of getting laid later down the track.
*you'll want to argue this point by saying that we don't give birth through our peehole-correct. But our cervix is roughly the same size as a matchstick and look what comes out of it. If you still want to argue, shut up.

I could probably keep going on this topic forever. But given that you've probably been forced to read this and you have an important Playstation game to get back to, I'll stop. Just remember "this too shall pass". Life will get easier, you will get laid again and we will get saner. We just need a little TLC and help from you.

Penis.

- Posted using BlogPress from my iPhone