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?

Things I would like to say but won't

Ok, so I appreciate the irony of the title of this post when I am indeed about to say things that I wouldn't normally say. What I mean is that "Things I would like to say to your face, but won't". I know that might make me sound a bit gutless and dishonest, but I don't like hurting peoples feelings and I don't have the energy to enrage anyone right now anyway. So I'm going to say it here instead. Because I hope that writing it down will make me feel a little less angry and a bit more tolerant.

• To all those people who clog up facebook newsfeeds with their living, breathing misery... "Get over it, life ain't that bad"

• To people who whinge when they are sick.... "Harden the fuck up" (that's if you're a man. If you're a mother with kids and you're sick then I send you big hugs)

• To the tossers who hang around out the front of the shops near our house at 1am.... "Go home. Get a life. Not neccessarily in that order"

• To my boyfriend...."Do I have to do everything around here?" and "Get that thing away from me"

• To the patients I'm working with tonight....."You know why you can't sleep? Because you haven't even tried." and "If you need to set your alarm so that you can wake up and take your sleeping tablets then maybe you don't need sleeping tablets"

• To the biggest knob I know....."You are a knob. In fact you're the knobbiest knob I know. The only reason I am still friends with you is because your knobbliness amuses me."

• To the daddies who go out drinking with 'the boys' every weekend when they have a wife and kid/s "And the cat's in the cradle and the silver spoon...."

That feels much better.

Go on. Have a go. It feels nice and I know you want to.......:)

I'll leave it to the experts

In my last few weeks of pregnancy I developed a strange obsession with soap. Yes....soap. This hasn't gone away since Max was born and if anything, it has gotten worse. I love everything about soap. I sneak into the soap section at the supermarket and sniff my favourite brands. When I'm not reading about baby brain development and physiotherapy ideas I'm reading about how to make soap. I like looking at pictures of soap that people have made and imagining how it smells. Soap is my porn.

My sister (the one who inherited all the creative genes) had some soap making kits and we thought we'd have a go at making some. Behold the wonder of my handmade soaps......

This was meant to be 'duck on a pond' but the blue turned out yellow and the duck sank. It looks like duck drowning in the urine of someone with liver failure (thanks Kylie)

I thought the colouring had a drip top lid. It didn't. It's meant to be a pale lavender colour but it looks like pond scum.



Oatmeal Soap- the oatmeal all sank to the bottom of the bowl so this one bar of soap contains 99% oats



This kinda worked



Are you blown away by my talent?
I think I'll leave it to the experts.

The wonders of social networking

Through the wonders of social networking some amazing things have happened. My post 'Can anyone help?' has been shared by many people on facebook that I have been contacted by some very kind people with offers of help. I've had email contact with some pediatric physiotherapists who have offered their time and I have been put in contact with a pediatric physiotherapy service in Melbourne for children with an acquired brain injury. This service is a bit pricey so I will probably have to work some extra shifts to be able to afford the private fees. We have Max's physio assessment at the Childrens Hospital in 2 days so I will wait and see what they can offer us. We don't have a lot of money but I will do whatever I can to give Max everything he needs. An empathetic THANK YOU to everyone who has shared the post and/or read the post and got in contact with me.

A friend had the excellent suggestion to keep Max's good arm inside his clothes to force him to use the bad arm. He had other ideas......

Another wonderful thing about social networking is that it has enabled me to get in contact with other parents of pediatric/infant stroke survivors. I have joined a few online groups and I have had some correspondence with some of these parents. They are like celebrities to me and everytime one replies to me I get all excited like a giggly school girl. They are my heros.

Yesterday a very special little girl turned 2. Her name is Piper and she is a survivor of infant stroke in-utero. I stumbled across her mother Megans blog a few months ago and was really taken by her beautiful writing. In the last few days I have had some email correspendence with Megan, she is an AMAZING woman who really lifts my spirits. I wanted to share her blog with you The Naptime Experiment: Labor Day. Happy Birthday Piper.

Sometimes life gets lonely

I like the picture above. I wanted to find a picture that could sum up how I feel sometimes. It's a long path, but it's a nice path and one that I could spend forever walking. That's how I feel about Max. I know that we have a long journey ahead of us, but I look forward to it. As long as I have my son, I have my happy place.

I have so many friends who have babies and before Max got sick I was getting into a great routine of visiting them. Now we either don't have time or I don't really want to. Seeing other babies makes me sad. Seeing other babies reminds me of the time when life was easy. Ok, so being a parent is never easy but when your child see's 10+ specialists, it's a little more complicated. I find it hard to relate to other parents now because I'm jealous. There. Said it. I'm jealous. I'm jealous because their kids are healthy and don't need to work as hard as my son does. I know that no one is jealous of me. Secretly, I know that people are glad that they aren't me.

But even though I'm jealous sometimes and maybe a bit lonely, I'm not depressed. Life has dealt me this hand for a reason and I'm strong enough to deal with it.

Another long day at RCH

Yesterday we had two appointments at the Royal Childrens Hospital (RCH). In the morning, Max had his MRI and in the afternoon he had an eye assessment. Part of me feels a sense of dread when we have appointments like this, nothing ever goes as planned and there's normally a fiasco of some sort. The MRI was booked for 0930 and went fairly smoothly other then the fact that we had to wait until 1130 for him to be seen. I have to say that he coped incredibly well with the delay, even though he had been fasting since 3am. I had set my alarm clock to 5am so that I could give him one last feed before he started fasting but accidently set the alarm to 5PM so he missed out. Damn. He had a general anaesthetic yesterday and I absolutely hate it when he wakes up. He screams until he turns purple. The type of screaming where there is nothing you can do to soothe him other then cuddle him, whisper softly that everything is ok and intermittently offer him his dummy. Sometimes I want to cry with him. It's times like that when I briefly fill with self pity and thoughts like "why me? why does my son have to go through this?". But I won't allow those thoughts to consume me, they would destroy me if I did.

Even food doesn't help :(

Max;s eye appointment was at 215pm. I was a little worried that he wouldn't be able to do the assessment as he was still groggy from the (delayed) general anaesthetic.

Exhibit A



I needn't have worried about Max being sedated for the main assessment because he didn't get seen until 6PM. Almost 4 hours after our scheduled appointment. Now I don't mind having to wait for appointments. I understand that sometimes there are delays that can't be avoided but 4 hours?? (Now I must say here a HUGE thank you to my sister Tara who came along and stayed the whole day with us. It keeps me sane). I don't know how many renditions of 'The Wheels on the Bus' I sang but by the end of the afternoon it went something like this-

"Mummy has had enough of this shit,

I wanna go home

I wanna go home.

Mummy has had enough of this shit

she wants to kill somebody"

(Yes, I will have to mind my language and leave out the homicidal themes when Max gets older but it'll do for now)

I don't like getting annoyed in front of Max so I always try to keep the 'calm mummy smile' plastered on my face, even when I'm fuming. By 6pm we were one of two families left in the waiting room. Our appointment should've been at 215pm and theirs at 330pm but the Opthamologist called them in first and I lost it. Only problem was that the Opthamologist quickly closed her door on me and the receptionist had gone home so there was no one to listen to my rant anyway. We eventually got seen, and his eyes are all good for now. It's hard to test a baby (they don't have eye charts with pictures of dummies, bottles and boobies) so we have to go back again in 6 months time. Next time I'll pack a picnic.

Max absolutely adores his Aunty Tara

Petechiae "A rash that should never be ignored"



The photo above was taken about 3 weeks into Max's admission at RCH. The red spots on his face are petechiae. These are the same red dots that appeared 2 days before he got sick. In Max's case it means that his platelets are severely low.

I wanted to write a post about petechiae, not because I think I'm an expert in it but because I want every mother/father/medical professional/person in general to know what it is and what it looks like. If me or the GP that saw Max had known what it was, then everything could have been prevented with one simple blood test. When the petechiae appeared, I didn't know how to google it, so I typed something like 'red spots on baby'. The word petechiae came up, along with images like this-

and this

Petechiae is a non-blanching rash (ie doesn't disappear when pressed). If you have a rash that is non-blanching it could be nothing or it could be a sign that something is wrong. Get it checked out.
A petechial rash should never be ignored.


I'm not going to give any medical advice and open myself up to potential lawsuits so here are some links-
http://www.bettermedicine.com/article/petechiae/causes
http://www.healthblurbs.com/petechiae-causes-tiny-red-skin-dots-little-red-skin-spots-pinpoint-red-rash-symptoms/
http://en.wikipedia.org/wiki/Petechia

My name is Faith and I tend to go overboard



Strawberries peeled and steamed.
Faith goes overboard- Exhibit A



I'll be the first person to admit that when I have a good idea, I can go a bit overboard. This is especially true when it comes to my attitude to parenting. I never wanted to have children because I believe that parenthood is the hardest job in the world. It makes me angry when I see half-hearted parents who seem to have forgotten that they chose to bring life into the world. I never chose to get pregnant but once I decided to become a mother, I also decided that I'd always put in 110%. But sometimes I go a bit overboard. One time at the hospital, I took Max for a walk in his pram around the RCH garden. I like to stimulate all of his senses as much as I can, so I picked some flowers, let him smell them one-by-one and then I laid them on his chest so he could look at them. By the time Rob joined me, Max had fallen asleep. Rob pointed out that it looked like I was pushing a dead baby around the garden and distressing other families. Oops. Maybe a bit overboard.

Yesterday morning I was at the supermarket and I had (what I thought was) a brilliant  idea. Since Max is showing interest in holding his own bottle I decided to buy him a feeder cup. Only I couldn't decided which one to buy, so I bought 3.

Faith goes overboard
Exhibit B

When I got home from the shop, Max was due for a feed so I distributed his bottle between the three cups. I put the first cup in his hands and helped him guide it into his mouth. He almost choked. I'd put a ridiculous amount of thought into what sort of handles he needed but I hadn't thought about the fact that he's not at all accustomed to having fluid free poured down his throat.
Maybe not such a brilliant idea after all.

 

Believe it or not, the Strawberry Surprise turned out pretty good.







Sometimes I wonder

Recently Max has decided that he's a tummy sleeper. I've found him a couple of times in this position. Like I don't already have enough stress little man!

Sometimes I wonder how I'm coping. Sometimes I wonder why I haven't fallen in a heap. Sometimes I wonder if all the stress will catch up with me. Sometimes I have one of those days where I feel so damn sad and feel that life isn't fair. Today is one of those days. I don't have them often and I'm glad when I do because it's nice to experience real human emotions. I don't remember the last time I felt human. I'm more of a robot and that's how I cope. The hardest thing about having a sad day is that it makes people awkward. They want to have the 'right' words to say and they want to make things better. Some of the things people say is so ridiculous I can only laugh. The worst/funniest thing that someone said was "oh well, he may just be a bit slow. Like a person from the country". Ergh right. I've now conjured up an image of Max turning out something like 'Cletus the slack jawed local' from the Simpsons, mixed in with Forrest Gump. I'm not a violent person but I wanted to slap him.....until he bled. Sometimes I wonder why some people bother to open their mouths.

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.