Max and the nasty Dravet Syndrome

I have had a very busy week with children. I had my sisters kids come and stay for a couple of days to help her out while they renovate their home. I have looked after little Alice who is 8 months old for a day, which I do occasionally to help the mother out. I have also had my brothers kids here for a day too. My brother and his partner have 4 children all under the age of 5 and as you can imagine it is not easy juggling them and work. That is especially true since my nephew Max has a sever form of epilepsy called Dravet Syndrome. Max spends at least a week in hospital every month after having a sever seizure. It is heart wrenching to see him suffer and to see his parents go through the emotional turmoil of having a very sick child.

I didn't know much about the Dravet syndrome before Max was born but have recently done a lot of research trying to grasp what it is and what kind of future Max can expect. You see Max is only 22 months old, only 3 months older than my little girl and he has developed alongside her. They still play and when he is good, he is really good, a happy, friendly and cheerful little toddler. It took him a little bit longer to walk and say words, but apart from that his development both mentally and physically would be considered 'normal'. It is the epileptic seizures that he suffers from that set him apart. The seizures can be mild and last a couple of minutes or sever and last for over half an hour with the medication not helping. That is usually when he ends up in hospital with various doctors trying to work out what concoction of medication will help to stop the seizures and what possibly could be done to prevent the more serious ones repeating.

It is hard on poor Max, his siblings and his parents. It is emotionally draining and a major financial burden especially when you have 3 other children to care for. Medicare subsidies a portion of the medication that he needs but not 100% of it, and he is on a lot of medication. The bad news is that after the age of 2 it actually gets worse. His development is expected to decline and he is likely to develop other forms of seizures that are even more sever. He will need special care for the rest of his life and his life expectancy is something we at home don't talk about. There is hope that he will get through to early adulthood and if his development, both physical and mental, continues to develop slowly, there is a chance that he will be able to lead a semi independent life in the future.

If anyone is keen to read more about the syndrome click on the link here. Please say a little pray for my little nephew and thank you for letting me share this story of a brave little man and my week.
x

gorgeous Max at 5 months

its been a while....

It really has been a while. I haven't written a post in nearly 6 months and I don't really have a big reason why, only thing that comes to mind is that I had no inspiration and a growing toddler that took up a lot of my spare time.

But I have decided to dedicate a little bit of time to jot down some more of my thoughts since I do find it therapeutic to be able to get things of my chest and not harass my hubby or friends with all my random thoughts.

We have moved and are now living in a big house far away from water. I do miss the ocean and the proximity that we had to it. Even when I didn't go into it, I still enjoyed going out for long walks with a great view. But now we do have a swimming pool and use it daily trying to escape this hot summer which is great, and Lucy has a big backyard to ran around. With the multiple shark sightings around Newcastle and the attack in Mollymook, not going into the ocean doesn't seem so bad!

I have been busy moving, knitting, renovating and looking for work, but now things have settled down so I can take a breather and enjoy the rest of the summer.

xx

swing fun

the yo-yo diet of a toddler

Its amazing the amount of food that can be consumed by a toddler...especially my one! Since she turned one it seems that her diet has taken a weird turn. At first she decided to only feed herself and had a diet that consisted of only protein (and I mean anything from beef steak to fish fingers!), bread and fruit. Everything else ended on the floor with a face of disgust saying 'how dare you try to feed me THAT" and that was especially true to any form of vegetable. My little girl that would spend ages chewing on Chinese broccoli and carrot, all of a sudden decided that vegetables were not her friend! and of course I started to worry and think of ways that I could put veggies into her diet. I made heaps and heaps of meatballs stuffed with grated veggies and even put in some rice so her carbs were not just based on bread. She did love them and could eat 5 meat balls in a sitting, enough to satisfy an adult.

And then came days when EVERYTHING ended on the floor and I had to be satisfied that she ate some fruit and crackers and had her milk. I have no idea what was going on in her little head and the more I read about diet and toddlers, the more I worried that she was not getting the nutrients that she needs.

But then came this week were she decided that she is VERY hungry and the amount that my toddler has consumed in the last 2 days is astounding. I mean she is eating HUGE meals, all healthy and fully balanced but enough that if I started to eat that amount I would be the size of a house! She once again doesn't mind if I spoon feed her, she once again is loving all her vegetables and apart from having a full breakfast, lunch and dinner, she is also eating morning tea, afternoon tea and snacking on fruit all day long! Its astounding!

So the moral of this story is that I have decided to stop worrying! I mean I don't think she will starve herself and I have come to the realisation that she is slowly becoming her own person with her own individual personality and tastes and she knows what she likes and how much of it. Plus that with all the growth that she is experiencing and she is so unpredictable with her appetite that I will just GO WITH IT. If she's extra hungry I have a freezer of extra frozen meals that I can quickly defrost (heaps of meat balls too) and if she's not, well it can end on the floor and eventually in the bin (or the birds if its bread!).

I have come to the realisation that my darling is as stubborn as me and her dad, and it shows in her appetite. I wouldn't have it any other way though.

xx

Hand Print Art

the finished product

This idea I must say was not mine but my sister in laws and it was a good one. Our UK holiday was so planned that all of my hubbies family would be in the same place, at the same time. This is not an easy feast as one part lives in Australia, the other in the USA and the rest back in the UK. But it was great to see everyone and all the cousins met each other for the first time. It was loud and busy and gorgeous!

So back to this idea inspired by the sis in law. Well since all the cousins were together at the same time, we decided to mark the occasion with hand print art. We did three, so that the three siblings all took one home to their parts of the world, and we wrote the name and ages of the kids. It was a great idea and I will treasure mine forever.

It is such an easy thing to do, but it looks good and is a great way to remember how small they all once were when they are all big and scary teenagers!

Let me know what you guys think?   and if anyone wants to know how its made just let me know and I can write it up for you!

x

work in progress

Our Holiday in the UK 2014

In the last week I have been walking around in a blur of sleep deprivation, reminiscent of the first few weeks of Lucy's life. And its all to do with the massive dose of jet lag that my gorgeous one year old is going through. There is no way I can explain to anyone what its like to go on a 30 hour plane journey with a toddler AND in economy. Unless you have experienced it, you will never be able to picture it, but lets just say it will be a LONG time before I do it again, it will be after a time when the memory of the experience fades drastically.

Now I have to put up with jet lag. The complete time change is bad enough on an adult that understands what is happening but a toddler who was so ingrained in her routine, well lets just say she's looking for breakfast at 2am and is not happy when I don't give it to her!

But its not all bad; we had a great holiday visiting our family and friends in the sunshine. Hubby and I went away to Edinburgh for 3 days on a mini break without Lucy and I must say I loved the city. It was so warm I actually got burned (I Know, hard to believe!) and just wandering through the streets you felt like you could step back in time. We saw the castle, did a ghost tour and of course the dungeon tour for a laugh. 

We had a great holiday and made great memories that will last us a life time. Now back to our 'reality' and everyday life, already panning our next holiday.

Here a few photos from the holiday. 

celebrating her 1st birthday in the UK

Happy birthday Owl cake

Milford on Sea

Edinburgh

trying to spot a monkey

chasing wild horses

beach huts on the beach

Lucy is ONE!

OMG she is 1! My little angel has turned 1.. I still recall the moment that they put her in my arms and I thought 'what a funny little face' and she did have a funny face and from day one pulled the funniest expressions. She still does really but now they are much more controlled.

She melted my heart on this day last year and she still melts my heart with everything she does. And I never thought I wanted to be a mum but now can't imagine any other way of being.

Her first birthday is spend in the UK, among her British family and friends who don't get the pleasure of seeing her daily and she is going to be spoilt rotten. Its on days like these that I always think how much simpler it would all be if we all lived in the same country. I know both my hubby and Lucy would love it, but I don't think I could give up sunshine and my lifestyle that easily.

I have loved every moment of the last year and could not imagine now life without my Lucy, so I'm looking forward to the next years and the adventures that Mike, Lucy and I will encounter.

Love you my sausage
xx

Day 1

and now 1 year old

walking at 1

We are Going on a Holiday!

packed the baby!

This week we are going on a holiday. Not just any little holiday but a long plane journey holiday. I'm really looking forward to going to the UK to see family and friends and to catch up. Most have not met Lucy so it will be a fun holiday with lots to do and see and Lucy will turn 1 while we are there! There's a party already planned for her by her grandparents and I personally can't wait.
Also, though winter only came a week or so ago here in Sydney, I'm ready to go somewhere a little warmer, where the days are longer and my arms get a little bit of sun.

This is our first journey overseas with Lucy and I'm slightly worried... well slightly might be putting it mildly. My little girl is fun and loving and HATES being cooped up! If I don't take her out in the morning and then again in the afternoon, I might as well start pulling my hair out cause she will drive me NUTS! So you can imagine my tribulations at the idea of 22 hours on a plane being confined to an area about the size of her cot. Lets just say I'm worried! we have taken peoples advice and bought new toys and books and downloaded shows on the iPad, but I still worry because I personally just can't imagine it.

As a childless person I still wasn't keen on flying long journeys (just like Lucy I HATE being cooped up and confined... guess she gets it from me!) but I tolerated it with sleeping pills and LOTS of movies. I use to complain if I had a seat next to a child (to be fair, working all year with kids, my holidays were always planned as kid free zones) and now I will be the person that people won't want to sit next to and I won't be blaming them.

The packing has also got more complicated with all the extra debates on what to take and what is not necessary, putting things in the suitcase and then back again. To take the pram or not to? To take a sleeping bag or not bother? amount of nappies, wipes, food, change of clothes....etc etc? the questions continues along with the mess in the house.

So wish us all luck and if you don't hear from me for a bit there is a good excuse, we are on HOLIDAY!

Am I ready for Childcare???

Lucy my gorgeous girl, has lately been a little nightmare. I like to excuse everything with the idea of teething but I think there must be a few more reasons why she has been acting up, including being slightly bored. Being a mum is completely different to being a nanny, apart from the other 10 thousand reasons I have noticed an important one, I DON'T play with her as much. As a nanny I was at the park DAILY, I went to playgroups WEEKLY, music classes, Gymbaroo, walks and play dates and of course endless hours on the carpet playing. But that was my job and I did love it.

I still do some of those things with Lucy, but not all the time because responsibility and housework need to be done. So I think Lucy is bored and at times driving me UP THE WALL!

So last week I had decided that maybe it is time she went to Childcare, just one or two days where she can be social and have fun with kids her age and also get worn out. A good idea I thought, I could also get some work done and maybe even look for some part time work on those days to complement the After School Care I already do. I put her on the waiting list at a few centres and thought I would have to wait months (inner west childcare shortage sucks!), but a week later I got a phone call and they have a place!!

This is when the panic sat in, Am I ready to let go and actually let her be looked after by others and by others I mean strangers not my mum or sister or friends, just strangers? Am I ready to spend a couple of days without her? She will just be 1 year old and is that old enough??

I do understand that some women have to go back to work and sent their babies to care much earlier, but I have the option not to, Am I being a mean mummy??? Being a nanny myself I didn't think I was going to have this panic attack, mostly because from experience I know that Lucy will be absolutely fine and being the social butterfly that she is, she probably will love it. But being a mum I'm not sure I have it in me to let go this quickly? So the question really is, Am I ready for Childcare?

Anyway I have a week to think about it before the places are offered to others, what do I do?

Not Happy MUM!

Happy Mother's Day to ME!!

It has finally happened... I have celebrated my first ever Mother's Day as a mum myself. I have always thought that mothers day and fathers day was just Hallmark trying to make money on cards...I mean I love my mum everyday and not just on the one day and I think she doesn't need the reminder on the second weekend in May.
But having said that I now GET IT. Now that I have Lucy and was woken up with her smiles, sloppy kisses and a breakfast she 'made'. Its kind of special having a day where you get appreciated for what you do, so

"Happy Mothers Day Mama!!! I'm sorry I can't be with you today but I will be seeing you soon! Love you heaps and THANK YOU for all you have ever done for me and all the Love you've given us.... Love you loads xx"

my gorgeous mum and me on my wedding day

Gorgeous Lucy and I

top picture courtesy of Claudio Raschella Photographer

1 - Lucy and Mike

I have decided to create a list of all my favourite things, mind you not in any actual order. There is so much in my life that I love and am grateful for and in this little way I would like to say "Thank you" to the universe for providing.

First and foremost is my Gorgeous daughter Lucy with my one and only Love. Really do not know what I would do without these two in my life.

Puff the magic Dragon and other such music that I now listen to

I use to be all about the music, my hubby is all about the music... we have music in every room, we go to concerts and we (well he mostly) knows music. It came as a bit of a surprise this morning as I walked into the living room after my gorgeous sleep in, that I encountered Lucy and Hubby dancing away to "Puff the magic dragon"! Who would have thought?

We were so determined to give Lucy the best musical education, I was thinking classical music to stimulate her and some Beatles (cause you can't go past THE Beatles) and Hubby was hoping for Metallica and of course The Foos. So it came as a bit of a surprise for me as I entered the room and saw them dancing to kids music...what have we come to?!

It amazing the amount of things that we were "never going to do!" that have now become everyday life, music just being one of them. I have spend years going to Rhyme Time at libraries, singing and dancing at Einsteinz music classes and I still believe that music plays an important part in development. I have throughout my years kept kids music in 'activities' and only listened to adult music at home. I still remember little Selena at the age of 3 singing to James Blunt 'You're Beautiful', making up the lyrics as she sang along, a Great memory.

And now, with little Lucy its all out the window. Hubby downloaded kids music and every morning I wake up to it playing. But its not as bad as I imagined, the smile on her face and her bopping up and down to it makes it tolerable if not enjoyable.

Wollongong and other shenanigans..

I have been kind of absent from my blog. Its just been that kind of busy around here... the kind of busy that you don't have ten minutes to write or even think about writing. And its not unpleasant busy, actually its been a lot of fun... we've had a family Easter weekend; my nephew who lives a few hours away from us came and stayed for a couple of days; we had a friends birthday that involved a few drinks at a really cool Mexican bar; and we celebrated our wedding anniversary by going away to Wollongong for a night. Why Wollongong you ask? simply because I have driven past it many times but never have I been. So we thought, Why not?

We stayed at a nice hotel with a great view from our balcony....

...well that part wasn't the best but the hotel room was and going out for a long lunch with my husband (while Lucy was looked after by my mum) was. We ate, we drank, and we ate some more. In the evening we managed to even dance at the Illawarra Hotel... we were the OLDEST people in the place and were wearing more clothes then anyone else, but after a beer or two we stopped noticing.

so overall a great couple of weeks was had... I forgot to mention the most important development by my gorgeous Lucy... she had started to use her push walker to walk around the house...much too soon I think!

Our Easter way of painting eggs

We have had this tradition in our family forever. It stems from being Polish and celebrating Easter even more than Christmas, so since I was a kid we painted eggs on Good Friday. I can't imagine Easter without the eggs and without the painting.. and its not your ordinary painting, we use wax to create the design and food colouring to give the eggs colour.

Every year my mum would get out the wax and melt it on the stove and we would use match sticks to slowly dip into the wax and create patterns on the eggs. Mostly it was the females of the family that participated and the kids. Once in a while one the guys would attempt as well and pretend they didn't enjoy it even though they usually did.

This year my parents have moved away too far for us to just go for the one day to paint eggs so my sister is hosting the event, and even though my little Lucy is too small to enjoy the experience as yet, I cant wait to show her how it's all done when she is a bit older.

I do believe that some traditions are worth keeping and it is an important way to remember the past and keep it moving forward. My husband and I are from two different cultures, so it can be hard to combine traditions but keeping things from both our pasts is important too.

Happy Easter Everyone
xx

hot wax melted on the stove

using long sticks to mark eggs

scraping eggs when they have been painted

finished product

a weekend of searching for the perfect bag/nappy bag and the Aquarium

This weekend I have been on a search for the perfect (nappy) bag. I'm finding it actually really hard because I don't want a bag that actually looks like a nappy bag but a bag big enough to be able to take all the extra stuff that I carry daily. I'm talking a lot of stuff, my stuff, my daughters stuff and on occasion the stuff of a 12 and a 7 year old! So it needs to be big... but comfortable and not look like a big and roomy bag. That's just in case I need to throw all the baby and kid stuff out and can still use it as a normal bag on the off chance that I go somewhere without a child in tow!

So, you say Impossible? I say a challenge! so below are my top pics so far, let me know what is your favourite I'm finding it hard to decide?!

Bag 1 from Storksak (Elizabeth tan leather bag)

Bag 2 from Maranda Lee

Bag 3 from Lust Nappy bag (www.totalbagenvy.com)

Also took the family on an outing to the Sydney Aquarium. It was raining so seemed like a great idea... it took an hour in a queue to get in but Lucy loved it and in turn so did I and hubby. Was worth it just seeing her gorgeous face light up.

Hope everyone had a great weekend

xx