The smallest things help you climb mountains

I recieved an email several months ago from an amazing woman who's son had a stroke at 2 weeks of age. He is now 2 years old and doing so many things that doctors never thought he would. It's not often I hear stories of other babies who've had strokes and I was heartened to hear from her. She concluded her message saying that "the smallest things help you climb mountains". Never before have I heard such truer words. Sometimes it's hard to keep going with physio when it doesn't seem to be helping. But last night I had a small victory. Whilst I was feeding Max his dinner (a dubious invention of mine called 'Strawberry Surprise'), he reached out and grabbed the spoon with his RIGHT hand. He then shoved the spoon up his nose and almost poked his eye out with it but it didn't matter, he used his right hand! It's small victories like this that keep me strong and keep me going. I've been focusing more physio lately on his right hand, massaging it LOTS (even during 2am feeds) and constantly reminding him that it's there. I would do it even if it didn't help. But seeing even the
tiniest improvement helps me to keep going.

I will never be a masterchef

Lemme see if I got this right, you just put the spoon in your mouth.....

My Banana Rice Cereal

We all set unrealistically high demands of ourselves when we become mothers. In some part I blame TV. TV mummies have awesome figures, they have 2.3 immaculate children, their houses are clean, their cooking looks great and they manage to do it all with intermittent doses of razor sharp comedic timing. I'm not any of those things. Anyone who knows me knows that I can't cook, therefore I don't cook. I have no problems living off toast, noodles and packet soup. No problems at all, I've done it for years. But things around here have to change. Now that Max is having some solids (what's called 'an educational diet') it's time for me to start changing. I don't want to raise my baby on frozen dinners and takeaway. I just don't. My first attempt at mashed pumpkin wasn't too bad except my hand got tired mashing it so it stayed lumpy. I was deterred for awhile until I finally invested in a three tiered steamer and stick blender. Voila! Easy steamed veggies, perfectly mashed everytime. I even dabbled in something a bit different yesterday, 'Banana rice cereal'. I was pretty pleased with myself when Max happily gobbled down the whole bowl. I was so pleased with myself I made it again for his dinner.....and his breakfast this morning. He's lucky that bananas are so expensive at the moment, otherwise he'd be eating it three times a day for the rest of his life. I'm sorry for not being a masterchef baby, I'll try and get better ;-)

The difference between mummies and daddies

I'd get in trouble if I posted an incriminating daddy photo so I'll stick with this one cos it's cute :)



 I often hear women say things like "when me and husband/boyfriend/partner have kids, we're going to share the load 50/50". Ergh right. I read a quote somewhere recently that made me giggle, I can't remember where I read it so I can't quote it word for word but it was something like "when you first take your baby home at some point you will hate your partner more then you've ever hated anyone". So true. The problem is, that despite all good intentions mummies and daddies are different. In fact, the biological differences between men and women has never been more apparent to me then when we first had Max. I have prepared a list of some of these differences below...
- When baby screams at 2am daddies are capable of sleeping (and snoring) through the whole event. Mummies can't.
- Daddies can take upwards of half an hour on the toilet. Mummies try and get it over and done with as quickly as possible so they can put on a load of washing before baby wakes up.
- Daddies still manage to watch their favorite shows on TV. Mummies favorite show is the inside of her eyelids.
- Mummies history of Internet searches lists things like 'developmental milestones, baby food recipes and teething symptoms'. Daddies list of searches is R rated.
Daddies aren't bad people, they're just different. The sooner that mummies accept that, the happier everyone can be.

Today we saw Max's last MRI......

Today we had an appointment with a Neurosurgeon at RCH. We routinely have reviews from the Neurosurgery team who are monitoring whether or not any surgical intervention is required to remove the blood from his brain (at this stage not required). We still haven't had the latest MRI after the most recent fiasco so the surgeon showed us the images from an older one. We haven't seen the images before, no one has offered and I haven't asked. I was expecting that the surgeon would have to point out the areas where the bleed had occured and I'd kinda nod and go 'hmmm' pretending I could see it. Well, he didn't have to point anything out. The damage was so bad that it even a blind person would've seen it. I knew it was bad. I'd been told it was bad. But I had never seen how bad it really was. The whole left hemisphere of his brain is.....fucked. Seeing it makes me so sad. I try and not focus on what he has lost but rather on what he can achieve but days like today hurt. My little boy never deserved this start to life.

Can anyone help?

I'm a big believer in doing my own research rather then always relying on the experts to have the answers. But at the moment I am stuck. The problem is that we are on a waiting list for our local 'Early Intervention Program' & this is likely to take about 6 months (gotta appreciate the irony of the term 'Early intervention'). The physiotherapy department at RCH has offered their services in the interim but even that has a 6 week wait. I can't even begin to tell you how much this pisses me off but I'll save my rant on the shortcomings of the public health system for another day. I need help coming up with other strategies for getting Max to use his right hand and ideas to help him relax it more (it's always in a fist). We do a lot of massage and prompt him to grab with his right hand but I wonder if there's more I could be doing? My beloved Dr Google has been no help whatsoever. There is so little information on stroke rehabilitation in infants. Much of the information is about recognizing a stroke in babies (thanks but you're too late) and rehabilitation in adults. Ergh! When Max first got sick a lot of people asked if there was anything they could do to help. At the time there wasn't but if you could help by offering suggestions, suggesting links or even sharing this page via Facebook/twitter so that more people can see it, that would be much appreciated.

A mothers guilt

Ok so maybe I should feel guity about this....:)

A friend of mine writes a brilliant blog about her experiences of being a first time mum. I love reading it because she says it how it is. No bullshit. It makes me reflect a lot on what being a mother is about. And it's made me realize that there is no 'perfect mum'. One thing that I never expected to feel so often as a mother is guilt. I've since learnt that this is a fairly common 'mum thing' and perhaps doesn't mean that I'm a bad mother. Recently I returned to work. I didn't feel that guilty about working, we need a roof over our head and food on the table. What I felt guilty about was needing a few hours sleep after finishing my night shift. In my glorious 'supermum' fantasies I imagined myself breezily walking in the house and continuing with the day full of smiles and love for my child. Ergh right. Instead I was smelly, surly and confused. I tried to sleep for a few hours whilst Rob entertained Max but I couldn't. Why? Because I felt guilty. It's almost like one becoming a mother you become a little bit crazy. I know that a lot of my guilt is irrational but I feel it anyway. Lately I've been able to put Max on his playmat in the mornings while I make myself a coffee. I feel guilty about leaving him on his own for my own flippant caffiene requirements. I felt guilty this morning when I woke from a fabulous dream by him crying. I put the dummy in his mouth so I could try and return to the dream. I've only once made him homemade purée and that had so many lumps in it that he wouldn't eat it. Guilty again.

Physio Nazi

I stayed true to my word about doing physio with Max every time he was awake. Often this was as simple as sitting him on my lap to help his head strength and other times it was more intensive. I massaged him at least twice a day on his bad side and never left him to lie in bed staring at the TV. I often forget those early days and how far he has come since then so I thought I'd write it all down here. When he first came out of ICU he struggled to suck his dummy because his facial muscles on the right side were so weak. To counter this I always put the dummy in the right side of his mouth-within days he was sucking again like a champ. He could only turn his head left and his eyes were always looking left. His right arm was very weak and his hand always clenched. His left leg was surprisingly unaffected but I always did exercises on it anyway 'just in case'. His eyes didn't focus and he wouldn't track things with his eyes. He didn't babble or smile anymore. He didn't show any sign that he recognized me. When he did tummy time he couldn't lift his head anymore. I had to support his neck again like a newborn baby. I'm now pleased to report that now you wouldn't know that anything had ever happened to him. Bit by bit he has regained everything he lost and more. He is now back on track with his developmental milestones. the only thing that still needs work is his right arm as he still favors his left. It's so nice now to be able to put him on the floor with his toys and let him play in his own way for awhile without the pressure of physio all the time. We still do alot with him everyday but I'm far more relaxed about it now. I'm so proud of mysel for staying true to my word but I'm even more proud of him.