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.




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Don't mess with the bedtime routine

Yesterday was Max's half birthday. In my head, I had imagined it being a beautiful day. It wasn't. The day before was a beautiful day with lots of smiles, giggles and successful naptimes. The day before was so successful that I got cocky. I took Max to the community radio station with me whilst I did my drive show. It was a busy but fun afternoon. Imagine doing a traffic report whilst trying to entertain a 6 month old. It went something like this "Outbound on the ring road the traffic is.....Max stop pulling off my headphones....heavy as usual.....get your finger out of my nose.....meanwhile on the Eastern Freeway.....don't eat the microphone...." (and so on and so forth). But he enjoyed it, so I did too.




By the time we got home it was 6:45pm. He normally goes to bed at that time so I didn't think he'd have any problems sleeping. Wrong. The night went something like this......
7pm- finish bottle, has medication, daddy puts him to sleep
730pm- Max wakes up. Mummy cannot get him back to sleep so reads some stories.
8pm- Mummy desperately plays every relaxation track on YouTube to get him to sleep
845pm- Max is finally asleep
1130pm- Max is awake again. Mummy gives him a bottle and change his nappy.
1144pm- Max doesn't want to sleep. Max wants to practice putting the dummy in his mouth and pulling it out again.
1230pm- Max is finally asleep again. Mummy goes to the loo cos by then she's busting.
1232pm- Max is awake again. Mummy contemplates selling him on eBay.
1243pm- Max is asleep again.
214am- Max is awake again, blowing raspberries.
216am- Mummy tries to give Max a bottle. Max isn't hungry. Nappy change.
245am- Max is still awake. Mummy gives up and calls in daddy.
3am- Max is asleep again
445am- Max is awake again
5am- Max is asleep again
530am- Max is awake again. Mummy and Daddy concede defeat and make coffee.

So everyone was a little bit fed up on Thursday, including Max who was a low-medium grade of feral all day. That afternoon he flaked out before 5pm and slept normally. He isn't sleeping through the night yet, but I can handle the 4-6hour nappy/bottle/sleep thing.

I will never mess with the nighttime routine ever again




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Wordless Wednesday- A day in the life of Max

Nom nom, avocado on toast



Bath time, check out the baby boobs!




Jolly jumper....




Some physio with mummy




Cuddles during physio with Jess




DJ Max....








You're not meant to eat the microphone baby....




And I dare not take a photo of him sleeping now cos it took me nearly 2 hours to get him to sleep. Sweet dreams busy man xxx



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Macrosomic Baby

If you missed the last post, you wouldn't know that Max is turning 6 months tomorrow. I'm in a reflective mood this week and thinking a lot about my first 6 months as a mummy. Today, I wondered "what happened 6 months ago today?" aka the day before Max was born.....

Initially, all that came to mind were hideous memories of being 39+ weeks pregnant. The heartburn (OMG the heartburn), the insomnia, the boredom and the intense fear of the unknown. In hindsight, I now realize that I was pretty depressed when I was pregnant. Isn't hindsight great? Luckily, those hormones that made me feel so miserable disappeared almost as soon as he was born and I felt like myself again. I'd much rather have had depression whilst pregnant rather than after he was born. As least I had time back then to wallow in my own misery!

I'd spent much of my pregnancy trying not to feel anxious about childbirth. After all, it's inevitable ending to the whole pregnancy thing and stressing about it for 9 months wouldn't change anything. However, that all changed when I had a scan at 32 weeks to re-check a previously low lying placenta. That is when I was told that I was having a 'Macrosomic Baby'. In laymans terms, that means that my child was huge. At 32 weeks, he was the size of a 36 weeker. I was having a shrek baby.



The thought of childbirth is terrifying enough for a first time mother and finding out that my baby was the size of a baby hippo made it even worse. On the same day of the 32 weeks scan, we also had our first childbirth education class. Our teacher was an old school nurse who should us a graphic video that was filmed sometime in the '70s. It was horrible. After that day, I was an anxious wreck. The fear kept me awake most of the night and it was all I could think of during the day. How on earth was I going to squeeze out Mr Macrosomic??

The doctors were convinced that I had gestational diabetes so I had to do the darn glucose tolerance test again. Whoever thought up a test making a pregnant woman fast is a sadist.
I didn't have gestational diabetes.




(38.5 weeks pregnant with mega-saurus child)

I had another scan at 36 weeks and this time he was the size of a 41.5 weeker. Holy crap, the kid just kept getting bigger. I begged anyone who would listen to induce me. By now I was envisaging him being the size of a full grown toddler by 40 weeks. The answer was always the same. "Let's just see what happens". Not that reassuring really.

Finally, one day before I was 39 weeks, a midwife was concerned about the size of my baby and referred me urgently to an Obstetrician. And that was where I went on the day before Max was born. Exactly 6 months ago. I was so excited about the appointment but the obstetrician gave me the same response "let's just see what happens". I cried when I left that appointment. Ok, I didn't just cry I bawled my eyes out. That same night, my waters broke. I'll spare you the birth story. He finally came out weighing 8 pound 10 ounces- completely bloody normal.



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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.


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Some beautiful photos

I really hope this works! Since my computer has been kaput this week, I've downloaded an 'ap' to write this blog and add photo's. I've managed to get some beautiful photos of him lately, despite the fact that he has been in a feral mood all week. Behold....



We're trying to get him weightbearing more on his right arm, to strengthen it more.




I've bought him a 'mirror box' to use in physiotherapy when he gets older. For now though, he enjoys looking at the other gorgeous baby in the room.





This is Max with our private physio Jess. I think this photo shows how wonderful Jess is. She is so sweet with him and he absolutely adores her. We are only doing structured physio with him 2 (sometimes 3) times a day now and are seeing fabulous results because the program she has put together is so comprehensive.




We had a horrid day on Thursday. Max's second tooth is cutting through and he was cranky, cranky, cranky! To make things worse, we had to spend a few hours at RCH getting blood tests and seeing his neurologist. This picture was taken just before he had lunch and it was (what felt like) the only time he was happy all day! I love how small he looks in the highchair.





One of our new physio exercises is to have Max to sit up by himself and allow him to fall. This will help him learn a whole heap of wonderful things but the thought of letting him topple over terrifies me. So, we practice this one on my bed where it's nice and cushy.





Going.....





Going......





Gone! (yes, this is actually how he landed- cheeky sod)

Some good news from this week is that we have been given the go-ahead from our neurologist to start weaning him off his anti-seizure medication. Hopefully in a months time he will be medication free. It does scare me a little bit though. I never want to see him have seizures again but also know that we'll cope ok if it happens.

Lastly I want to finish with my favorite picture of the week. A photo that I call 'Brave Nana'- cos who doesn't think that a babies bum is cute?




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Darn technology!! (yes, it deserves two exclamation marks)

I have so much I wanna post. But my computer is being a royal pain in the butt and won't let me upload photos! And the photos say more then any words can, so bear with me whilst we sort it out. AND Max has one tooth that's cut through and another that's so close to cutting through. He hasn't been all that pleasant to be around the last few days, so blogging has been the farthest thing from my mind.
Will have update soon!! (not sure if that deserves two exclamation marks though)

Some good news and the Grand Poo-Bah of Hemiplegia

 

It's only Wednesday but we've achieved a lot this week. Maybe that explains why I'm absolutely exhausted! Monday we spent most of the day at the hospital, we had two doctors appointments and a session with the Occupational Therapist. Some good things came out of the day. Well.....good for us, perhaps not so good for the hospital physiotherapist. Max's Pediatrician, the magnificent Dr Tom wasn't too impressed that we are paying for private physiotherapy and so he is going to speak with the department on our behalf. Max's hematologist wasn't impressed either and is also going to talk to them. Dr Tom is also going to try and help us to obtain funding through Medicare to help pay for private therapies. I really like the idea of that because I like having some control rather than being at the mercy of the public health system.

That same day, we had a session with the hospital Occupational Therapists. It was the second time we met Sue, an OT who is doing a PHD in kids with hemiplegia. After our session on Monday, I've nicknamed her 'The Grand Poo-Bah of Hemiplegia". OMG, the woman is amazing. (The OT we've been seeing is lovely but we haven't achieved all that much). Sue picked up some things that I hadn't noticed at all or had noticed but hadn't realised how frequently he did it.  If you look at the photo at the top of this post, you'll notice that Max has his right arm pulled back at the shoulder. I knew he did this but once it was pointed out, I realised  that he does it nearly all the time. This is causing a lot of tension in his shoulder and surrounding muscles. Which totally explains why he struggles to reach for his toys- his shoulder is too tight. Because I spend so much time with Max the abnormal becomes almost normal and this is why a good therapist is worth their weight in gold! We've got some new stretches to do on his right arm and I've seen some improvement already.

We saw Max's private OT from SPOT today for the first time. She gave us some extra strengthening exercises and now I finally feel like we have a comprehensive program that works on his right side as well as his overall gross motor development. I feel so much more relaxed knowing that he has therapists who know what they're doing. Every day it's hard work doing physiotherapy and stretching with him, if we don't do it constantly then he slides backwards very quickly. But at the moment I at least have some respite from the constant researching of stroke therapies. And boy does that feel good.

Before I sign off I just want to say a huge THANK YOU to everyone who supports this blog. I can't reply to your messages personally but I read them all (sometimes a few times). Knowing we have so much support really helps me stay strong and survive the rough days. THANK YOU 'Team Max' xxx

(There's some other good stuff in the pipelines but for now it's a secret. Hell, a gal has to have some secrets, lol)

Max falls in love with his private physio

A few days ago we had our first session with the private physiotherapist. Jess works at 'SPOT for kids' a program which specializes in children with an Acquired Brain Injury. The main office for SPOT is about an hour from where we live so thankfully they offer home visits. It costs a little bit more but well worth it to avoid a 2 hour round trip. I'm working an extra shift each week to cover the cost (man is sucks being the breadwinner sometimes!)

Jess was due to come around at 11am. Max woke up from his morning nap in a dead set filthy prat of a mood. Everything I did made him grouchier and grouchier. So I tried to put him back down for some extra sleep- apparently this was hilarious because he grinned at me from behind his dummy (cheeky little sod). I was beginning to suspect that it was going to be a disaster.

Me and Mr Grumbles met her at the door and it was love at first sight. From the moment Max saw her, he giggled like a school girl meeting Justin Beiber. He laughed at everything she said, he squealed with delight during stretches and he lasted 50 minutes of the one hour session (thank you god). He flirted so outrageously it would've almost made me sick if it wasn't so darn cute. Max only rolls over from tummy to back occasionally but when Jess was there he rolled over time and time again like a trained puppy. It was fabulous.

The best part of all was having a full hour that wasn't rushed, with someone experienced in pediatric hemiplegia. I learnt more in that hour then I did the whole time we were in hospital. (Don't get me wrong, the hospital staff are wonderful but there are more constraints in the public system).

The day after the session, Jess emailed me a list of exercises to do with Max over the next few weeks. We have lots of exercises and stretches designed to help him strengthen his right arm and help him in meeting his developmental milestones. This week we will be meeting with the Occupational Therapist from SPOT and I'm quietly confident that she will be just as great. Eventually it might become too confusing having so many therapists but for now it's reassuring. Finally I feel like I have some control over how often he gets seen, rather then having to beg like a munchausens mother.

10 weeks and 2 days

Max was only 10 weeks and 2 days old when I pulled up to the Emergency Department at the Children’s Hospital. That morning, he was a little bit sleepy, a little bit grumpy and a little bit  pale.  I’ve long mistrusted GP’s (but that’s another story) and I'm a paranoid first time mum so I decided to take him to the hospital to have him checked out. I figured that he probably needed some anti-biotics and prepared myself for a long day waiting around to be seen.  When I arrived at the Hospital, he was unconscious . Not long after that, he was on life support in ICU having suffered a massive stroke.

Max was only 10 weeks and 3 days old when his little body had seizures over and over again. At first,  nobody thought it was serious. That afternoon however, an EEG revealed that he was fitting almost continuously. He was having seizures even when we couldn't see them. Late in the afternoon, an MRI showed that his brain had swollen dangerously as a result. Max was placed in a medically induced coma early that evening to protect his brain from further damage. It was important to me that mine was the last voice he heard before his big sleep so I read to him "Where the Wild Things Are" because that's about a little boy called Max. I sang his favourite song 'Incy Wincy Spider'. It took everything I had not to cry.

Max was only 10 weeks and 4 days old when we were told that he had extensive damage to the left side of his brain.   I didn't hear much of what the neurologist said after that. All I could think was "Why him?", "Why us?". No one knew how this would affect him. Our life would become a waiting game.

Max was 10 weeks and 5 days old when we realised that the right side of his body was paralysed. I noticed when one of the doctors was checking his reflexes that they were almost absent on his right side. It was one of many times I would scream obsenities inside my head, whilst outwardly trying to maintain my composure.

Max was 10 weeks and 6 days old when he started to wake up from the coma. Waking up from a coma is nothing like it is on television. His eyes opened one painstaking millimetre at a time but even when they were fully open, they were glassy and spaced out.

Max was 11 weeks and 1 day old when he started breathing by himself andwas taken off life support. Finally, I was able to him in my arms again.  He screamed and screamed, turning himself purple in the process. Not exactly how I imagined he would react but this was 'normal' according to our nurse that day. Her theory was that when babies did that, they were in fact, telling their mummy about everything they've had to endure.

Max's stroke was caused by severe thrombocytopenia (low platelets) and it would take another month before the hematologists were able to find a treatment that worked.  His immune system relentlessly attacked his platelets and he had transfusions twice a day during that time.  His platelets always sat at a dangerously low level which meant he was always at risk of having another bleed.  I coped by throwing everything I had into doing physiotherapy with him (ok and I may have cracked it once or twice with his doctors)

We spent a total of 5 weeks in the Neuroscience Ward. It was one of the most character building experiences of my life. Have you ever shared a room with 3 other children and their parents for 5 weeks? 24 hours a day, 7 days a week. I could write a book with the stories I have.

Max was one week shy of turning 4 months old when we were finally able to take him home.

Max is now 5 months old. He can do everything that other babies his age can do but he has some paralysis in his right arm. The week that my baby spent in ICU, should have been the hardest part of his illness but it wasn't. The hardest thing, is the long journey we now find ourselves on and the physiotherapy that we do with him day after day, though we often go weeks without seeing improvement. We have a 1-2 year wait for our local early intervention program and there are virtually no other programs for kids like Max. So when Max is asleep, I research EVERYTHING I can find about stroke rehabilitation. It would be a waste of my time, to focus on the negatives when I have so much to be thankful for.

I have been blessed to have an amazing network of family and friends by my side. Without them, I am certain that I would've 'lost the plot' at least a dozen times by now.  I have surprised myself by always managing to find the strength to keep going, even on the days when I've felt completely broken. Inwardly, my heart cries for my son and the challenges he will have to face in life. Outwardly, I smile and sing his favourite songs hoping that he doesn't see the sadness in my eyes.

I hope that one day, Max will regain most of the strength in his right side and nothing will get in my way of helping him achieve that goal. I hope that I can instill in him the confidence that he can still achieve anything he sets his mind to. Have you seen the movie 'Finding Nemo?'. I'm going to use that movie as an analogy when he is a bit older. Even though one of Nemo's fins is small and malformed, he still manages to achieve great things.  More then anything though, I just want him to be happy, it's the only thing that truly matters.

This is Max today waiting for his lunch. He is now 5 months old

Max is my silver lining. He is my rainbow. He is my hero.