Daddy is a big, fat stinky poo head

It took me awhile to decide upon the name of this post. I may have included some expletives amongst my list of ideas and by 'some', I mean 'heaps'. The inequities between the mummy and the daddy STILL pisses me off sometimes. Raising a child is supposed to be a team effort- in most cases it isn't. There is a huge disparity in workload right from the beginning. I don't know a mummy alive who hasn't got a personal story that enforces that theory. Even if you forget about the nine months of being pregnant and the joys of childbirth, even once they're born the majority of men are pretty much useless.

This is a hot topic for me at the moment because over the last week I've had homicidal thoughts towards daddy, been a bit cross with daddy. The thing is, I'm happy (most of the time) to do everything but sometimes I need a break & this is where we run into trouble......

Last week I 'booked' a sleep in. I booked it on Monday morning because daddy doesn't work Sunday evenings. He asked me what time I wanted to wake up, I said at least 8am. I thought I'd made it clear however that I wanted to wake up naturally, just like he does every damn day. The night before I told him how I was really looking forward to, waking up slowly, stretching, rubbing my eyes and taking my sweet ass time. But all daddy heard was '8am'. So, at 803am, daddy and Max came trudging into the bedroom *sigh*. Because daddy only hears what daddy wants to hear, in this case '8am'.
*Disclaimer: I was still appreciative of the sleep in.

I dragged my sorry butt into the kitchen and started preparing Max's breakfast. It was at this time that daddy announced he was going for a nap. Getting up at 5am was exhausting work, he said. I won't repeat my exact response, but it was something like "my darling, I always get up at 5am and I don't have the luxury of a recovery snooze". To daddy's credit, he stayed awake.

Daddy now has a full-time job, which is great. For a few months, I was the sole income earner and it sucked. I worked crappy night shift hours, because it paid better. I barely slept because I hated missing out on time with Max. I also, did most of the work around the house, because it was 'all too much' for daddy. When daddy started working, I never expected him to do much to help me- hey I may be cranky but I'm not deluded. But, not only does he do sweet f--- all, he expects a ticker tape parade for the f--- all that he does do. That alone is enough to piss me off but thenhe criticizes my parenting.......

The hours that daddy works is 3pm until midnight. One of the perks of that, is that he has been able to deal with Max during our recent 'party time at 3am' problem. For that, I am grateful. The problem with those hours though, is that he isn't around for baby bedtime and that has been a NIGHTMARE lately. He is asleep in the morning, when I'm trying to get us organized for the day and entertain Max at the same time. All I want (and I've told him this), is for him to be awake for an hour at the most so that I can organize things. Then he can sleep, all damn day for all I care. Last week, Max was teething, his moods were revolting AND he was clingy. Daddy could hear all the commotion, but did he ever get up to help?
**Disclaimer: I know that most mummy's have to do the morning rush alone because daddy has gone to work. My question is this- would mummy be annoyed if she went into the bedroom and daddy said "having trouble with him this morning are ya?"

Last Thursday afternoon, I snapped. I was such a frazzled, exhausted mess in the morning, that daddy took the afternoon off work to give me a break. Lovely. I was so appreciative, even though I secretly suspect that he just didn't want to work.

What should have been a relaxing time, was totally revolting. Max started screaming his head off & daddy tried to settle him. After a while of nothing working, I tried to gently tell him the strategies that I've found effective. Got my head bitten off for interfering.

So, I sat back on the couch and listened as the screaming continued, for what seemed like hours. I thought that this would prove to daddy, just how difficult Max has been lately.....nope. It's apparently my fault, for not having him in a strict routine (how do you propose I do that, when we have a medical/therapy appointment nearly every day???)

So, I kept sitting, trying to ignore the chaos in the other room. I tried to telepathically send him the message, "he's teething and you know that, panadol, panadol, panadol".

Eventually, I couldn't take it anymore and went to get the panadol myself. We'd run out of the old stuff, so I'd bought a new bottle, that just so happened to be a different brand. And guess what? Daddy was furious that I'd changed panadol brands without telling him. Daddy was also angry that I hadn't intervened with the panadol earlier......excuse me? I thought you didn't want me interfering? I'm always trying to explain to him, the therapy exercises we are doing etc. On a good day he feigns interest for awhile, most of the time, he doesn't bother. But apparently the panadol brand is something I should've communicated.

I'm exhausted at the moment. I'm drained. I'm overwhelmed. I'm so stinking tired. And I cracked it. I was literally paralyzed by the anger. I couldn't scream and I couldn't cry, I was just too damn angry. This would be the first time in Max's life that I felt absolutely no guilt about walking away. I went straight to bed (it was 4pm) and I slept all night. I left daddy to deal with everything.

You'd think he would've learnt his lesson about pissing off a sleep deprived, frazzled mummy after that. But noooooo. A few days later, he picked me up after my night shift and declared that he was going to bed first. Turns out that he stayed up most of the night playing playstation and drinking bourbon........

Daddies totally suck, ass. Today daddy left his tracksuit pants on the bathroom floor. I used them as a bathmat.


How on earth did you reach daddies movie guide Max??




Stop Max. No. Don't figure out how to use the remote control. It'll completely destroy your father......

Lunch today will be roast beef with a side dish of vestibular stimulation

I'll be the first one to admit that I'm struggling a bit with Max's new 'zest' for life. Please don't get me wrong, I am so happy that we are finally doing a program that is helping him. It's just that it literally happened overnight. Last Monday, Max was fairly passive and vague when I started the Snowdrop Program. Last Tuesday, Max was hyperactive, inquisitive and demanding. I love seeing him so alert, but the sudden change in his personality requires sudden parenting adjustments. He's also teething, so we've had lots of screaming and bugger all sleep. Getting him to sleep at bedtime has become a nightmare. I'm starting to feel as though I'm drowning.

For us, a fairly typical day (lately) starts at 2am, when Max decides that he's had enough sleep and is ready to start the day. It takes around 2 hours to get him back to sleep. At 5am, he's awake again and the day begins. I'm now in the process of changing his sleeping routines and teaching him to self settle. Yes, I should've established this long ago, but the sleeping routine has been kinda low on the list of priorities. You see, one of the issues I have, is that, our therapy schedule is so intense that I often forget the 'normal' baby stuff. (ie oh bugger, when did he last have a bottle???)

On an average day, I complete our Snowdrop program with him twice a day- morning and evening. That involves- deep pressure massage, brushing, tactile and vestibular stimulation exercises, as well as exercises for his visual tracking. We also do some constraint therapy- holding down 'lefty' to force 'righty' to grab the toy. A big component of the program is giving Max lots of exuberant praise. This releases dopamine and that helps to 'cement' the new neural pathways I am helping him develop.




(This is our play/therapy area)

Incorporating different sensory experiences into his day, is a big part of the program.


(This is the 'sensory' box that I've made up for him)



Most days, I make him a 'salad' for lunch. He loves the veggies plus it's another way of incorporating different textures and sensations. The choice of food is important too. Because of the damage to his brain, he is extremely prone to constipation. He also struggles with anemia, so including iron in his diet is really important (and iron exacerbates constipation). Zinc and Omega 3 are both really important for brain development, so I make sure to include that. Plus, there's all the usual baby nutritional needs like protein etc etc



(I've just started putting all of his favourite toys in one box as a problem solving exercise. I call it the 'for the love of god can you please entertain yourself for 5 minutes' box)


Throughout the day, I sing him lots of nursery rhymes. This is to help his language development- there's something about the rhyming that benefits language acquisition (I can't remember the proper explanation!!). I also talk and talk and talk to him, just as if I'm talking to another adult. I pause to await his response as if we are having a conversation.

Lots of kids who've had strokes, struggle with language acquisition and exposure to different languages is extremely beneficial. I purchased some baby sign DVDs that we've recently started watching. I'm a bit annoyed though, that the signs they teach are pretty useless. Yes, he can sign 'stars' but what is the bloody point of that?? He's in bed long before the stars even come out. I'd kind of hoped for something a bit more useful like 'hungry' or 'pain'. Ah well.

I also have some Italian flashcards on my iPhone that we go through from time to time. It amazes me how much he loves them.

We also read stories every night.
We read the same few stories over and over again, as this is the best way for him to acquire language. It's really hard to motivate myself to read the same stories, so I add different sound effects and accents. When I've totally had enough, we change books.

Then, there's the music.....lots and lots of music. Because, music activates both hemispheres of the brain, it is excellent in helping him learn new information and skills. Max LOVES music. He likes Ella Fitzgerald, Louis Armstrong and old school Jazz. He likes songs from musical theatre. He loves his playschool CD. He's also pretty partial to some hard core techno music. And Mozart..... he adores Mozart. As soon as the opening strains of the Concerto for Piano and Orchestra begins, he blisses out.

There's also the physiotherapy and occupational therapy that he needs every day. If I didn't do them, his muscles can easily become rigid and his joints get stiff.

I try so hard to strike a balance between therapy and relaxation but it's tough. Luckily, I've figured out ways to make things most things fun- a few fart noises here and there works wonders. I have a very strict rule that we MUST have at least one good belly laugh each day. I think the twinkle in his eyes and his killer smile, speaks volumes.




Exhibit A




Exhibit B

I enjoy every second that I spend with Max- ok that's not entirely true at 2am. But, at the same time, I'm so damn tired. I recently got some advice that really hit home "this journey is a marathon, not a sprint".


At this stage, I'm not quite sure exactly how to put this into practice.




The shuttlecock was meant to be a tactile toy. Apparently it also makes a pretty good pacifier ;-)


Posted using BlogPress from my iPhone

Little miracles

We've had a lot of physio and OT programs over the last 5 months. In terms of Max's overall gross motor development, he's only a little bit behind. His private physio Jess has been a godsend. Because of her, we've been able to keep him 'pretty much' on track and by doing lots of stretches, we've stopped his muscle tightness from getting worse. Before we met Jess, his right shoulder was so stiff that we couldn't stretch it above his head. Nowadays, it's only a little bit tight and he doesn't tense up or grimace when we stretch him. One exercise however, that we have worked on with him, ever since the stroke, has never shown even the slightest improvement. He has never tried to reach for anything with his right arm.




You see this penguin? I flippin' HATE this penguin. It has hung on the right hand side, above Max's head, on his play gym, for the last 5 months. When the plastic bubble on the penguins tummy spins, it sings a little song. Nifty ay? Every day for a few months, we sat with Max and the damn penguin, trying everything we could to entice his right arm to reach for it. At one stage, the right hand side of his play gym, looked like it was going to the Mardi Gras. He never bloody reached for the penguin, a few times he'd knock it accidentally, but that was it.

As he has grown older, good ol' mister lefty has become increasingly cunning at procuring toys placed on his right side. Recently, even his feet have been getting sneaky and helping to compensate for mr righty. This morning, Max picked up the slinky with his foot and then passed it up to his hands. It's cute and pretty darn tootin' clever but frustrating as hell, when we're trying to get mr righty to pull his own weight.




(yes darling, you are very clever)

A few weeks ago, his OT told us that Mr Righty would never initiate the process of reaching. She is actually writing her thesis on the topic "hemi-kids will never reach for things with their affected arm". Then why the bloody hell have you had us trying to do this?? We've used bright toys, noisy toys, toys that light up (etc etc) to entice mr righty to get moving, with no improvement. The OT also told me that day, that Mr Righty would always be a 'helper' hand. Our new goal then, has been to teach Mr Righty how to 'help' Lefty in some ways. I'm pretty impressed, at how quickly Mr Righty is improving with his helping ability. Righty is now (sometimes) able to hold a toy, whilst lefty presses the buttons. Righty now helps out occasionally when something needs to be held with two hands.




Righty tends to be in a fist though, so often isn't all that helpful.

A few posts ago, I wrote about my recent discussions with Andrew Brereton from the Snowdrop Program in the UK. I don't know how to do links when I'm writing this on iPhone, so I can't link you back to that post. (It was called 'That boy needs therapy', if you wanna know more about it). We received Max's program late last week. I practiced it with him over the weekend and started it officially 3 days ago.

After those first few practice days, I noticed it. Tiny, little signs that Mr Righty was waking up. Tiny twinges of his fingers so slight that I wasn't sure if I was just imagining it. When I feed Max, I placed his bowl of food and water on the right side if I need to go and grab something. That way, I know that he won't be able to get it and pour cereal on his head (haha lefty, you can't reach that far). I did the same thing today but BAM, I turned around and his water bottle had been knocked over. Hmmmm, it couldn't have been righty.....could it?

Later on today, we had a session with our gorgeous physio Jess. Jess presented his favourite bells, (as she always does) to his right hand. And guess what? Mr Lefty didn't lean across and interfere this time. He darn well reached out with his right hand and grabbed them. He did it three times, we had to make sure that it wasn't a fluke.

We still have a long way to go and I'm not sure what Max's future will entail. But that doesn't bother me right now. My boy, is starting to achieve things that 'the experts' had said wasn't possible. That makes me feel pretty smug.

Today, I cried tears of joy for the first time in months. I don't know how many minutes or hours I've spent, staring at that little arm, silently begging it to reach for the toy. Today, a little miracle occurred and I can't begin to tell you how good that feels. Max is rapidly changing from a spaced out and vague little guy to a boy who is hyperactive, engaging and cheeky. Andrew and the Snowdrop Program are truly amazing.

This evening, my mother summed things up perfectly-
"Mummy's little man is coming back".




(My mother and Max)

- Posted using BlogPress from my iPhone

Deep, deep down

I have a lot to be grateful for, so I don't like to complain about our situation. I don't cry, I don't dwell on the 'what if's?' and I never forget that there are so many people who are worse off then us. The last few months have given me a new perspective on life that I cannot put into words. I appreciate every moment I share with my son. Sometimes, I pause and try to take a snapshot in my mind of those blissfully happy moments. I feel privileged and honored to have 'met' (through the wonders of social networking) other mothers who's children have survived strokes. I may never meet those woman in real life but there's great comfort in finding others who are dealing with the same issues. Having said all that, sometimes I get tired of being positive. I'm tired of trying hard to not make people feel awkward. I'm tired of the cliches that people come out with. Sometimes, you don't need to say the 'right' words to show support. Just listening is enough. So, for this post only, I'm going to indulge in a rare moment of self pity and say what I feel deep down, WITHOUT a fairy floss ending....

Deep down I'm jealous. I'm jealous of all the other mummies who don't have to do therapy with their babies all day long. I'm jealous that those babies are easily ticking off the developmental milestones and my baby has to work so damn hard. I'm jealous of mummies who have the energy to talk about petty, insignificant shit.

Deep down, I'm angry. I'm angry that a lot of my sons innocence was taken away when he was only 10 weeks old. Sometimes, when he flashes one of his trademark grins, I want to run outside and scream "It's not fucking fair. Why him?". I'm angry that he'll never know a life without therapists and doctors appointments.

Deep down, I'm scared. I am so fucking scared. I'm scared that other kids might pick on him when he's older. I'm scared that he'll have low self esteem. I'm scared that he'll struggle in school. I'm scared that he'll be unhappy. I'm scared that he'll be diagnosed with autism. I'm scared that he might need another bone marrow biopsy soon because his white blood cells have been inexplicably low for awhile now. More than anything though, I'm scared of the day he asks me "mummy, when will my stroke get better?".
Because no child should have to ask that question.







- Posted using BlogPress from my iPhone

I climbed Mount Everest. Twice.

In June, 2010, I had a dream that I climbed Mount Everest. Twice. It felt so profound and prophetic at the time. A few weeks later, I discovered that I was pregnant with Max. Surviving pregnancy and childbirth was my first mountain to climb. Boy was that an epic journey! I started climbing the second mountain when Max first got sick. I've just reached the pinnacle and now we're on our way down....

So many things going on in my mind right now, that I'm a bit confuzzled as to how to articulate myself. I don't really know exactly what I want to write about in this post, so I figure that I'll just start writing and see what happens.....

Starting with some good news....Thanks to a random act of kindness, Max has been accepted into an early intervention program. This entitles him to 2 hours of therapy per fortnight. So now, I don't have to beg the hospital for services AND I can choose how often he sees the private physio (who I'm definitely hanging on to!!). Because our appointments at RCH are dwindling off (more about that later), I feel like we are now truly embarking on the next leg of our journey. The early intervention team, will be seeing Max until he starts school so they're about to become almost 'part of the family'.




(a gorgeous photo, just to break things up a bit)

We have now been discharged from Neurology at RCH. Max has (so far) successfully weaned off his anti-seizure medication. He is so much happier without the medication. I'd read that phenobarb can cause agitation, so I think this may have been causing his mood swings. I am loving 'getting to know' my baby's true personality. And boy, does he have bucket loads of personality!




We have also been discharged from Neurosurgery at RCH. Last week we had our last appointment and saw some images from the latest MRI. This time, I was prepared for the anguish I'd feel but nonetheless, I felt like I'd been slapped across the face with a wet fish. Even though I know that he is young and his brain will learn to compensate for the damage, it feels completely shit seeing your baby's brain so badly damaged.

I'm feeling a sense of freedom now that we are less tied down with appointments. I've celebrated by not doing as much housework and consequently, there is 'stuff' every where. It bothers me, but not enough to rectify it. In some ways, now that life has granted us some respite, it is making me realize how much we've been through these past few months. It sounds silly I suppose, how could I not have realized that my baby having a stroke was a significant life event? I guess, I've been running on auto-pilot for awhile. So the house is messy? Big flipping deal.

And finally.... Now that life is getting more predictable, I've run out excuses for eating junk food and being lazy. I've joined Weight Watchers online and have embarked upon getting myself healthy again. If I'm going to teach Max a healthy lifestyle, then I have to have one myself. I admit though, it felt strange this morning doing something for myself. I'll keep you posted on my progress.

If my dream is true, then I've climbed Mount Everest twice now. Hopefully, this means that we can begin the downward decent towards 'normality'.



Ain't love grand?!


- Posted using BlogPress from my iPhone

The Innocuous Red Spot

A few days ago Max had a Haematology appointment. I worked night shift the night before and didn't sleep before we went to the appointment. Usually the haematology appointments are fairly straightforward and we don't have to wait too long. But on this particular day, our regular haem was off sick so there was only one doctor on. "I'm sorry Miss Valentine, but there's a bit of a wait today". "yes, that's fine...."

So....we waited. And, as usual me singing playschool's favorite hits was the only thing that kept him happy. I actually started nodding off at one point.

Eventually there was only us and one other family in the waiting room. We'd been waiting a few hours, it was getting so late that the receptionist was packing up for the day. This was to become the fourth time that we would be left waiting so long that the receptionist had gone home (not that I'm keeping count or anything....)

The other mummy in the waiting room approached the receptionist and complained. The receptionist informed her that we had arrived before her so we would be seen first (woohoo!!). The lady continued complaining that they were only late because her son had required blood tests beforehand. I wanted to call out "big frigging deal woman, if we have blood tests before an appointment then we arrive earlier" (but I didn't). Instead I sat there nodding off with a well and truly pissed off expression on my face. If the wind had changed, I would been stuck forever looking like an Orc. I fantasized about what which orrifice I wanted to shove her stilettos up.

Whilst we were waiting, I had noticed a small purplish, red spot on Max's head. It looked a little bit Petechial but a little bit not. So when we finally saw the haematologist (Dr Anthea), I showed her. She wasn't sure either but recommended that we come back in the morning and have a blood test. I adore this particular hematologist, she explained to us the results of some previous blood tests and gave him a thorough examination.

We were finally walking out the front door of the hospital when my phone rang. It was Dr Anthea, "um....I've been thinking and since Max has a history of being complicated, let's just get that blood test done now. Can you guys go around to the emergency department?". "yes, that's fine....".

When we got to the ED, the triage nurse greeted us with "you must be the Valentines, come through and we'll do the bloods quickly. Dr Anthea has just called and explained the situation". (I love Dr Anthea!!)

So the bloods were done and his platelets are great! Thankfully it's just an innocuous red spot. Max and I slept well that night.




- Posted using BlogPress from my iPhone

Max is 6 months old this week

This morning Max woke up at 5am. I quietly changed his nappy in the dark and gave him a bottle. I popped him in bed next to me, wrapped him up firmly, played some relaxation music and dozed off. Shortly after, I was woken by a tiny little finger being rammed up my nostril. I opened a bleary eye, he grinned at me and said "raaaah". How can you be angry with that?!

I took him into the kitchen, put him in his highchair and gave him some toast (with avocado- he loves to lick it all off). It was then that I looked at him and thought "thank goodness you aren't a newborn anymore". Whilst I'm still not a fan of starting the day at 5am, I much prefer spending my days with a (nearly) 6 month old.

There is an element of predictability with a 6 monther that you don't get with a newborn. Ok, so I don't what sort of mood he'll wake up in, nor do I know what time it'll be. Some days he likes cereal, some days he doesn't. Sometimes he falls asleep in the car and other times he'll babble the whole way (and fall asleep as we pull into the driveway). But.... these days I can pretty much understand what his various vocalizations mean, I know that he likes to 'wind down' before a nap by reading stories and I love how Mozart is his favorite music (always makes him fall asleep with a smile on his face). I LOVE that he can entertain himself a bit now. I ADORE watching him try and figure things out. And his beautiful, cheeky grin makes me melt everytime, without fail.

So, whilst Max was happily slurping away on his avocado toast, I enjoyed my morning coffee in relative peace. I even got his bottles prepared for the day and did the dishes, all before 6am. Noice!

Since, Max will be 6 months old this week, I thought I'd take a trip down memory lane.

Once upon a time, Max was this little.....




I loved him so much but he was so small, so new to world and so unpredictable. This photo was taken after his first bath, he was 24 hours old. This was the first time I had dressed him and I bumbled through it like Edward Scissorhands. Those damn press stud buttons. Tiny, confusing little bastards.

A few days later, I gave him a dummy. God bless you Mr dummy. You restored my sanity.


About a week or so later, he looked something like this....



I always took photos of him sleeping back then. It was my trophy, "look at me, I got my baby to sleep". In the early days it stressed me out so much that he only napped for 20 minute stints during the day. One day, I just decided to accept that that was 'his thing' and I've been much happier since. Incidentally, even when he was heavily medicated on seizure and pain medication he still only napped in 20 minute stints.

There was no reason for him to be wearing this 'Wally' hat.



He was a few weeks old here, we were at 'Births, Deaths and Marriages' registering his birth. He slept with his arms up, the whole time.



I think he's about 6 weeks old here. He's watching Larry Emdur on TV.




I love this picture. What on earth are you thinking little man?




This is the expression he used to pull when he was first put in the bath. I called it 'Charles Manson'.




After a few seconds, he would realize that he liked bath time and changed to something like this-





Gorgeous boy, I think he's about 8 weeks old in this one.




I have almost 1,700 photos of Max on my phone. 600 of them were taken before he got sick. I'll be honest and admit that the next photo hurts me to look at. It was the last photo I took of him before he got sick. When he was in ICU, hooked up to a zillion machines and in a coma, I looked at it a gazillion times. Most of those times, I cried. All I had was hope that one day I'd see him smile like this again.





And finally, photo number 1,612 taken a few days ago





Happy 6 month birthday Maxwell Hendrix Valentine. Thank you.


Posted using BlogPress from my iPhone