Sleeping angels

Last night I had a wake up call. It was a huge reminder of why I should never forget how lucky I really am. I was lying in bed looking up images on google of 5 month old babies (I wanted to see what Max looked like compared to other 5 month olds). If you've ever used a touch screen phone you'll know how easy it is to accidentally click on the wrong link or thumbnail. That happened to me and I'll never forget the picture I had clicked on.

It was a beautiful baby boy, I think his name was Ethan. He wore a pale blue knitted cardigan with matching beanie and he had a small soft Teddy in his arms. He was 5 months old or perhaps it's more accurate to say he was 5 months gestation. He was a sleeping angel. He wasn't alive.

I clicked on the website the picture came from because I wanted to know more. It took me to a page that was a tribute to sleeping angels. I saw pictures of other babies who would never be taken home to the nursery their parents prepared. They would never cry at night and keep their bleary eyed parents awake. They would never have their first day at school.
I realized then that this page was probably the only way their parents could share these pictures. They couldn't have plastered them on Facebook like the rest of us. They probably wouldn't email them to relatives overseas. They probably wouldn't text them to friends and family. Right then and there I wanted to tell every single one of those parents "your baby is beautiful".
We all have a lot to be thankful for.

Rain Man

If you haven't managed to guess from my last few posts, I'm feeling a bit disheartened at the moment. There are two reasons for this. The first, is that Max has been a big grump this week. I suspect that it's his teeth moving around and annoying him but there's always part of me that worries it is something more. To use another movie analogy, have you seen the movie 'Rain Man' with Dustin Hoffman and Tom Cruise? Sometimes Max has strange tantrums, it's really difficult to calm him down and it reminds me of this.....

It scares me.

The second thing that has gotten me down is that we have started doing a modified version of 'Constraint Therapy' with Max. Constraint therapy is when the childs 'good hand' is put into a cast to force them to use their 'bad hand' (I'm still trying to figure out another word to use instead of 'bad'). I've mainly read about it online, so I'm not sure if it is done here is Australia but the results overseas look promising. At Max's assessment the other day, we met an OT who is doing her PhD in children with hemiplegia. Max will be joining her study when he is 8 months old. She recommended that we start holding Max's left arm down to encourage him more to use the right.  We started doing it yesterday and it was harder then I thought. When Max is allowed to use both of his arms, he clearly favours the left but is still able to move the right. When his left arm is pinned, his right just kinda dangles there like a dead weight. Sometimes he stares at it like he's just willing it to move (I am too).

It's a little bit soul destroying.

Wordless Wednesday- a symbol of hope

I've decided to join in with the rest of the bloggers and post my first wordless Wednesday post. This is one of my favourite photos of Max's time in hospital. It was taken the same day that he came out of the coma and started breathing by himself. This photo was taken just after his ventilator was removed and just before I held him again for the first time.

I love you Max

Don't sweat the small (or expensive) stuff

If your child is sick with a cold or flu, be grateful that it won't leave any permanent damage.

If your child cries after immunizations, be grateful that this is the worst thing they have to endure.

If your child keeps you up at night, be grateful that it won't last forever.

If your child damages something expensive, be grateful that they haven't damaged their brain.

I hate the word hemiplegia

I'm a baby, not a hemi

Until recently my most hated word was 'panties'. Have you seen the introduction of the movie 'The hand that rocks the cradle?'. Well the word 'panties' reminds me of that creepy gynecologist. Anyway, I've digressed.....My new most hated word is 'hemiplegia'. It means 'paralysis down one side of the body'. My son has hemiplegia and it really shits me. What shits me more is when someone says "Maxwell is a right hemi". Um, no he's not, he has a right sided hemiplegia.

Today we finally had Max's physiotherapy/OT assessment at RCH. Apparently it's normal to go 6 weeks without seeing a physio upon discharge. They like to give you time to settle in at home first. Ummm it took a few days to settle in at home not 6 weeks. You know those times when you feel ok during a situation but when you get home and think about it, you just get more and more annoyed? This is how I feel now.

There are a few things that annoyed me. The first being that the physio had to score him on some tests, add up the scores and then generate a graph which led her to the conclusion that Max needs to be monitored (No shit captain obvious)

The second thing that annoys me is that Max has some mild developmental delays. It's annoying because we work our butts off every single day doing physio with him and other people do f--- all with their kids. It's not like I expect him to be a superbaby, I was just kinda hoping for 'normal' (ish).

The third thing that annoys me is that because Max's developmental delays are mild, they only want to see him every 2-3 weeks. The only reason that Max isn't more delayed is because I work my butt off with him. AND I figure out what exercises to do with him by doing research every spare minute I have. AND if I spend a few days focusing on his right arm it improves a bit, but he forgets the other things he has learnt. I try my best but I have no idea what I'm doing and I could really use some more support from the experts here. The pressure feels intense sometimes.
The Early Intervention people said that there could be a 1-2 year wait for their program. So, I'm going to pay for private physio/OT because at least then I won't be at the mercy of the public health system. I am not going to wait for my son to have major developmental delays before I intervene.

I wanted to finish this post on a happier note. This is Max finally using his right arm (without prompting) to swipe at his toys. Awesome job baby :)

This week I am grateful for.....awkward family photos

A few of my friends in the blogosphere dedicate a blog every week to the things they are grateful for. It's a nice concept and reminds me of all the things that I am grateful for. I thought I'd dedicate my first 'Gratitude Saturday' to one of my favourite websites 'http://www.awkwardfamilyphotos.com/'. It is downright thigh slappingly hilarious and actually makes me laugh out loud. When Max was in hospital, Rob stayed with him most nights, whilst I went to our room at the hospital and slept. Every morning I woke up at 530am and went straight to see Max. And every morning when I woke up and checked facebook, there was my daily awkward family photo. And (almost) every morning it made me laugh. With so much chaos and stress going on in my life, I am so grateful that I still have my sense of humour and I'm oh so grateful for awkwardfamilyphotos.com.
Let me share with you some images (most of the captions come from the website, I'm not that funny)

The plaid doesn't fall far from the tree

Some people are just far to obsessed with themself

It's amazing what dad can do when he sets his mind to it

Dad was just glad he was allowed to wear pants at all

Hmmmmmm

Father of the year?

"When my father got remarried after my parents divorve my mother cut him out of all the family photos. Using scissors became too labour intensive so she switched to white out"

If he couldn't blow out the candles, his father was always there to back him up

The bunny didn't have time to dispose of the body


Thank you http://www.awkwardfamilyphotos.com/  for making me laugh when I needed to the most.

This is my first Maxabella Loves Gratitude Saturday
http://maxabellaloves.blogspot.com/

Hogwarts School of Witchcraft and Wizardry

I am a hypocrite. I am a big, fat, baby spew covered hypocrite. I hesitated before writing this post because I feel a bit silly for what I am about to admit. But in the interest of keeping this blog as 'real' as possible, I am compelled to share.

I never wanted to be one of those parents who had their babies on a busy schedule of extra-curricular activities. I mean seriously? They're babies. They need lots of love, cuddles, stories and time with people who adore them. Oh, plus food, nappies, a roof over their heads, a dummy, maybe a few soft toys, blankets, nappy rash cream.....you get the picture. But now I find myself becoming one of those parents. Hypocrite yes?

Since Max's stroke, I have learnt so much about brain development and neural plasticity. Infants brains are not 'hard wired', but rather, they form neural connections through their experiences. It is our hope, that Max's brain will wire itself around the damaged area and that his right brain will take over most of the functions of the left. But to learn, babies need to be stimulated and the medication Max is on makes him a bit spacey. If I leave him on his playgym, more often then not he will just stare at the window/TV/wall. I'm happy to let him do this occasionally just not all the time. So I interract with him, sing to him, pull faces, make funny noises, show him how to play with his toys, read, do physio exercises and whatever I can think of to get those neurons firing. We have a lot fun but it's also pretty exhausting. Have you ever tried to be jolly and educational from 6am to 7pm 7 days a week? This is why I'm looking into different activities for us to do together.

Through an old friend I have recently found out about the Shichida program. Shichida is basically 'Right brain education' and focuses on children between the ages of 0-6 years old. Here is a blurb from their website

"With over 35 years of experience in researching children’s behaviour, we are able to provide an innovative early childhood curriculum focusing on a right brain education approach. By focusing on right brain education, our early childhood resources facilitate and assist in connecting the right brain with the left-brain.  This creates a condition called ‘pole bridging’, where both left and right brains are well coordinated and fully function together. This method encourages comprehensive whole brain training for children."
The program aims to bring out 'the innate abilities of your child'. (Here is the link if you want to know more http://www.shichida.com.au/program). The image this conjures up is something like this.....

So, here's the thing. Normally this would sound like a load of fancy-schmancy, new fangled, bong smoking hippy shit. But I'm interested in learning more about the program for Max because he only really has a right-brain. It makes sense to me to do everything I can to help him develop the most awesome right-brain ever. (Though I'm not too sure about the 'pole bridging' concept in his case). Not only do I feel hypocritical but if I take him then I'll be stepping waaaaaay outside my comfort zone. The classes are held on the 'affluent side of town', where I imagine the parents probably hold down corporate jobs, wear tailored slacks and have children called 'Preston'. It'd be awkward, cringe-worthy and downright hilarious if you were a fly on the wall watching me in all my bogan glory trying to fit in.

Am I overthinking things?