Monday, September 15, 2014

Neurological Pathways and Epilepsy... our journey

As many of you know, who have followed us on this journey, when our boy Teddy was 4 years old he was diagnosed with epilepsy.

We were sitting at the dinner table one evening finishing off our summer salad when I looked over towards him and noticed his head turning ever so slowly to the left, his eyes following. It was such an unusual action for him, that I patted him on the hand, which was resting on the table, to get his attention.

There was no response.

We called his name. We waved our hands in front of him and still, no response. That is when I jumped up from my chair and ran for the phone and called the ambulance.

By the time they arrived he was coming out of this absence seizure, but bless their hearts, the paramedics thought it would be a good idea to send him into the main hospital for a check up. When we arrived it was a quiet night. We all gathered in a little room, with our now bright and cheerful son. There were about 3 paediatricians chatting with us, along with two nurses. Teddy was sitting on my knee when he suddenly raised his arms above his head and I felt his whole body stiffen.

I shouted to the doctors to come and get him, and they laid him down on the table while his little body was racked with the shaking and convulsions of a full-blown grande mal seizure.

It was horrible and ghastly, but looking back on it now, one of the best things that could have happened at the time. As one of the paediatricians said to me that night, it's not often they actually get to witness something like that. They are usually called in after the fact.

Teddy having had this massive seizure in front of so many experts meant that he was fast-tracked through the system. And because I was 37 weeks pregnant with Miss A, they took pity on me, wanting to get all the hospital procedures out of the way before our next baby arrived. With an overnight stay, Teddy had blood tests, CT scans and most importantly, a neurologist referral. Everything came back clear, but our journey was far from over.

It took nearly 18 months to get Teddy stable on his medications. Sometimes during that time, he would have dozens of absence seizures over a matter of minutes. He would be playing outside in the long grass when he would disappear from sight and we'd run up and find him seizing. One horrible day he had seizure after seizure. One seizure would exhaust his little body, and he would go into a deep sleep for about 40 minutes following each one. Then he would pop up from the couch where he was lying with a smile on his face. Then half an hour later..... down again. I didn't want him growing up and knowing that it was a handicap - I wanted him to experience life just like any other kid, so that meant getting in the swimming pool with him, it meant standing under him on the playground in case he had a seizure while on the monkey bars. It meant switching from baths to showers. It meant teaching my older children emergency procedures - how to turn him onto his side before even calling for help. We learned how the tongue-choking myth is, mostly,  just a myth. We learned that disorders like this are not environmental, and sometimes the brain won't tell you why it's doing this. We learned how to value each day.

It was a horrible and torrid time. He had lots of prayer from our church family. He had an amazing neurologist who was gentle with him and his approach to medications. He started him on a very mild anti-seizure drug until we found the one that was just right for him. In the end, he was on a high dose of Epilim and a low dose of Ethosuxymide. But at last the seizures were gone.


Finally, we had them under control, and our lives began to return to normal. Teddy was able to go to school, but he had started late. To this day, we are unsure whether the delay in his learning is because he lost a year of crucial milestones - the age of 4 years old when a toddler's learning curve is huge, or if it was due to the toxicity of the medications. Teddy would often talk about feeling 'foggy' in his head. Teddy struggles to follow instructions that are not of the most simplistic. This is something that 4 year olds learn during that formative year. Instead of 'go to your bedroom and bring me your shoes' they learn more complicated instructions like, 'go to your bedroom and put your socks on and then bring me your shoes and your jersey." Teddy missed this development during that year.
He struggles to concentrate for longer than a 5 minute period at school or follow complex instructions.

Thankfully, he is now off all medications. It will be nearly 2 years since his last dose of Epilim. Every day we thank God for this blessing and every day we hold our breath. Thankfulness and fear running on the same tracks.

With teacher aide help and getting him into a good school here in our local town, he has come a long way with his learning. He is just managing to keep his head above water academically, but we have been looking for ways to increase his abilities so that as he grows and merges into the more senior school, where the work is harder and faster, so he will be able to cope and grow and succeed.


This year, he has a young, newly qualified teacher who has been amazing with him. And we have sought expert help outside of school to assist him. We have ruled out dyslexia and ADD and ADHD. He has no behavioural issues, is a social boy with lots of friends, but for some reason he just gets stuck when it comes to executive skills and academia. Sometimes it is hard to know if it's just a boy thing (you know, boys hate sitting still), but we have discovered that it is more than that now - there is a definite delay, not disorder, just that he has a lot of catching up to do.

We have been learning that the brain, no matter how old, can learn new pathways. Our greatest need at the moment is to extend our boy's concentration, so the expert advised getting him book activities that he can work on at home, that spark his interests.

Teddy has an obsession with cars at the moment. Every day he asks me some technical question about 4-wheel drives, or Bugatti Veyron's, and every time I say to him, "I know nothing about this. You're asking the wrong person! Ask Dad when he gets home." But he doesn't give up.

So I did some searching on Amazon and found several books that I hope will help him, and thrill him.

Exotic Cars by John Lamm.
A beautiful, full colour book with written detail about each car. It will be a challenge for Teddy to read this - even though the written portion on each car is minimal, the print is small, but I know he will be keen to read this, and I can see him sitting on the couch reading to us every night. There are facts about each car including the history, the price, the speed, the type of engine, the interiors.... he's going to love it!







And I found him some colouring-in books that also encourage reading and concentration.

Luxury Cars and American Muscle Cars by Bruce LaFontaine, and another soon to arrive on how to Draw Cars by Doug DuBosque. I know he's going to love these books, and hopefully, it will be a small step into extending his concentrations times that will help him at school, and on the way to giving his brain a new pathway.






In learning about these new brain pathways, I have found the book Smart but Scattered really interesting and valuable. It teaches about the importance of structure and environmental security and predictability, helping your child get organised, to follow through on tasks, learn from mistakes and stay in control of emotions.

Some of these books are available through my Amazon Associates link on the side bar, if anyone is interested in them.

If you know of something similar that you think Teddy would be interested in, please let me know! I am always on the look out now, for things that might help extend his learning neurological pathways.

Wednesday, September 10, 2014

Dear Kate - Your Hyperemisis Gravidarum Sisters Understand

I have always said I would rather go through labour and birth a hundred times over without pain-relief, than to have morning sickness once.

And I would know - I have had it five times. Even with the baby I lost at 14 weeks, I had severe morning sickness - or hyperemisis gravidarum - as its medical term is called. Each time I found out I had another baby on the way, which was usually just after the 4 week mark, I would spend the next week or so frantically trying to get meals in the freezer and get the house in order, because I knew that once week 6 hit, I would be down and out.

It's such an all-encompassing feeling. I tried to explain it to my husband once in terms he would understand....

"it's like being stuck in a stifling engine room on the Cook Strait ferry in a very, very bad storm for 12 weeks with no let up in the weather."

This. In fact, this picture describes hyperemisis gravidarum perfectly. Now just imagine yourself in the bowels of that ship.

Photo Source

With the new royal baby on the way, once again the spotlight falls onto this little-understood condition. I hate seeing all the criticism and mocking of Kate over this - it's just ignorant ranting by people who don't have a clue about this. You can't just 'get over it,' or 'suck it up, honey,' or 'find something to distract you,' or 'eat a cracker' or 'drink plenty of water.'
That advice is laughable.

It just doesn't work. It might be very treatable, as one midwife suggested in the New Zealand Herald today, but often those treatments just make them feel better, not the sufferer. An intravenous drip might save the mother from dehydration, but it won't take away the relentless, unmerciful nausea. There's nothing that makes this better, except giving birth.

The last thing you want to do is eat and drink, because every. single. breath. makes your stomach want to heave. Every drop of water or smell or taste will make you throw up, and if there's nothing in your stomach, then you'll just dry-retch all day long. The only release is sleep. I used to hate waking up in the morning because it meant a whole day of misery and getting acquainted with the toilet. At one point, my dehydration was so bad, that (look away if this is too much information), my urine turned brown.

I was the only one in my family to experience it this severe too; and sometimes, even women who have had morning sickness don't understand it. They liken it to their own experiences, which maybe was horrible enough to complain about, but not horrible enough that they couldn't carry on with their daily activities.

This kind of morning sickness that Kate has, and the one that I had, and what many women go through, is the kind where you absolutely cannot do anything, except lie as still as you can because even turning your head a little on the pillow will make you throw up.

Thankfully, I had a husband who was able to get time off work, but as our family grew, by the time I was pregnant with my fourth baby it was getting harder to manage, so my mother arranged for a young friend to come and live with us during the really bad weeks to look after the children, which was an absolute life-saver.

As the weeks progressed for me it gradually dissipated, though I do know of some women who have it the entire 9 months. I can't even imagine how awful that must be. They are truly heroic. I at least knew that by 22-24 weeks the worst would be over.

During my last pregnancy with Miss A, I had a tally each day. "Today I've only thrown up xx amount of times. That's one less time than yesterday." Progress!
We go through it because we know that the sweet baby at the end will be worth the weeks of hell. It's a short time in our lives for the reward of that precious life.

So, believe me when I say that childbirth is a picnic compared to the relentless assault of hyperemisis gravidarum.


photo credit: Defence Images via photopin cc

Tuesday, September 9, 2014

Sweet As Honey

Sponsored Post

It's a funny coincidence that I was asked to review these products this week, because I had just started my detox from refined sugar. Be gone evil white sugar. And I was switching over to use a Stevia extract when 4 days into my new regime I broke out in hives! Did you know you can be allergic to Stevia? So while I didn't want to go back to white sugar, but also wanting to get the stevia rash out of my system before I tried anything else, I turned to my old friend.

Honey.

Ahhhh, the comfort of knowing I can eat sweet and be safe from skin breakouts.

And I have been finding there are so many uses for honey.


Mother Earth have just come out with a new range of honey, made by our very own, precious New Zealand Bees. And my family have promptly made quick work of the Clover Blend Honey and it is nearly all gone.

This is the flavour of my childhood. Clover honey is my favourite. It is a warm, rich flavour of New Zealand hills and meadows and sunny days and the sweet, sweet engulfing aroma of our provincial apiaries and hives. I love it!


So this week I have used the Mother Earth Honey in baking for the kids' school lunches (my rice-bubble cake recipe is here), smoothies, honey butter, caught one of the kids eating it by the spoonful, honey on toast for breakfast, salad dressings, spoonfuls drizzled over porridge, and for one sweet boy, a hot lemon drink to soothe his coughing.

Have you ever made sweet butter? It is one of those things that I miss from my time in the USA. It's really good to use with bread or vegetables, or cheese and crackers. Maybe some of my American readers can suggest other uses for it - but you should try it, it's really a taste sensation.


Just soften any amount of butter and when it is soft enough to mix, pour some of the Mother Earth liquid honey into the butter mix to taste. Then use a spatula to mix it all in until it's whipped up lovely and soft and creamy.

I have used the liquid honey quite a bit this week. Usually, I melt what I need in a small pot, but to have it on hand without having to make another dirty dish has been helpful, especially since I have been making so many smoothies.


Do you like honey? And what do you use it for?

The Mother Earth range of honeys are now available nationwide in the grocery stores, and range in prices, from the small just-for-me 250gram pot to a large 500gram family-sized pot.

Saturday, August 30, 2014

I Didn't Always Love You Like This

For a Christmas project this year, I am making a little book for my family. It's an idea I've had tucked away for a few years, but I decided this was the year to do it. It's a compilation of family and recipes and memories and the very great blessing of being born a New Zealander.

I love being a kiwi. Having travelled to many countries when I was single and younger, and having seen many cultures and the way many people live - both rich and poor,  I know that what we have here is special.

It's hard to put it into words, because the feeling runs deep - but it's in the isolation of our islands, it's in the Pacific. It's in the rich history and the sparsity of people. It's the green and it's the blue and it's the unique culture. It's the kiwi way.
All-embracing. Trusting. Hospitable. Quirky. Rugged. Raw. Real.

I was searching online for a quote that aptly described how I feel about my country to put into my little Christmas book, but I couldn't find one. And a little thought said to me that maybe I should just write my own. It doesn't have to be brilliant - it is after all just for family, and they're hopefully going to forgive any over-sentimentality.

So I gave it a go, and this is what I wrote....


But I didn't always love New Zealand like this. I didn't appreciate it until I grew up. And not just growing up physically, but growing up in myself.

When I lived in America I hardly ever thought about it. I was having such a good time over there and enjoying all the differences and tastes of living in America, that it made New Zealand seem homely and unsophisticated, and I was not loyal to these little islands at the end of the Earth.

I had to return suddenly, and against my will, and I resented it. I would turn my nose up at the differences. That Christmas was green. That our aesthetics weren't finely tuned. That our lives were informal - that we are informal with each other. That nobody knew what a baby shower was (seriously back in 1993 it was rare).  That I couldn't buy A&W's Root Beer. Little differences that grated on me because I looked down my nose at small, homely New Zealand.

And then New Zealand worked on my heart. It has a way of getting under your skin, this place.

I will never forget an interview on September 11, 2001, when two kiwis, on the ravaged streets of New York said into the camera, "we just want to come home to New Zealand where it's boring. Boring is good."

It is my hope that New Zealand will always maintain this innocence. That it will be a haven from the rest of the world. A safe place. I have friends who have immigrated here from South Africa and the middle east, and they tell me that New Zealand has made them feel rested and safe and hopeful after the uncertainty of turmoil.

But more than that, it's just New Zealand. It just is. It's my home. My country. My native heath.

For me, New Zealand has become my safe place. I love it now without reserve.

New Zealand is enough for me.




Thursday, August 28, 2014

The Journey of the House

Thing have been.... sometimes frustratingly so..... very slow on the house-building project.

But hopefully in the next few weeks we'll have a very exciting announcement to make about this. I can't wait to tell you. After months of waiting for many things to come together... we are finally seeing some progress happening behind the scenes.

The waiting game with the building of our home has taught us a few life lessons. We had the trouble with getting a suitable plan, after ditching a few in the beginning as I wrote about here, then we were delayed with consent issues, then money, then builders, and all the other little things in between.


The irony of life is that for some, and we know people like this, life is just one big cruise, where everything seems to go smoothly and very few obstacles block the way. I know - very hard not to have a little envy with people like that. But I think for the majority of us, life is not about the ease and the cruise, but rather about the journey. The many twists and turns it takes to get to the destination.

I was telling my son this morning about the highways in America - those great big, straight and long concrete highways that make transportation so much easier and faster and safer when compared to our New Zealand roads of bitumen and hills and valleys and twists and turns, and when he turned to me and said, "but you'd soon get bored of that. The journey might take longer here, but at least there's always something interesting to look at," and it hit me then that our building project and dreams that we've been sitting on for nearly 3 years is much the same. The journey might have been full of angst and frustration and the unknown, but at least it hasn't been boring.

So I'm looking forward to sharing with you our exciting developments soon!


Saturday, August 23, 2014

To grey naturally..... or not?

When you get to a certain age, as I am.... which is just over the top of 40, the issue of hair becomes a little more problematic.

Do you give way to the grey?

I have naturally really dark hair, which means that when my first grey hair appeared in my 30's, it was so glaringly obvious I yanked that thing out before I had a heart attack from the shock. But it didn't stop there as I soon saw with a sinking heart - they just kept coming and coming, until one evening standing in front of a mirror very pregnant pulling out grey hairs absent-mindedly while my midwife was chatting away to me in the background she said to me, "you might as well give that up. You're not going to win the battle," and I realised that the day would soon come where youth would give way to middle age and I would have to make the decision.

I have friends who have made the decision to grey naturally and gracefully, and I so admire that and they look good! Amazing actually. I thought about it, really I did. For one quick minute. Then that moment passed. It was fleeting.

I just can't do it. You see my hair is high maintenance. It's curly, it's frizzy and I have lots of it. One drop of rain on my hair or one percent hike in the humidity and whoosh - my hair is twice the size and I look like I have an affro. (Can I just stop here and say, God Bless the inventor of the flat iron).

So this year that time of decision came. I had to do something about it, because it was getting to a point where I'd be having a conversation with someone, and their eyes would drift up to my fringe or the top of my head and I knew they had been distracted by a silver, shiny thing, and I just couldn't pull them out fast enough! So I began to colour hair - for the first time in my life, and even though it has increased the amount of money I spend on my hair, it is so worth it.  This photo is 3 days (and one wash) after my most recent colour.



At first I was so afraid of the hair dyes. I have inherited my grandmother's lovely soft, English, white, sensitive skin. Even fragrance in my moisturiser will turn my face into a tomato, so I had nightmares of ending up in hospital after an allergic reaction to the dyes. You know the stories. Just google hair dye allergy. You'll run screaming.

It has taken me awhile to settle in with a hairdresser here in Tauranga, after my wonderful stylist in Christchurch. After a year of going from one to the other, I came back to one of my original choices, Adoux Hair.

They reassured me in regards to the colour in my hair, gave me a couple of patch tests which yielded no startling results, and so I booked in for my first semi-permanent using a colour closely resembling my own natural colour.

I love my hair colour. I don't want to try anything else. If I was tempted to be daring and go for something completely different it would be red. I love red hair. I think it's amazingly beautiful.

The great thing with a semi is that it's very light. It doesn't actually give full coverage, so it appears more natural. I don't think it lasts as long as a permanent, but I just book in every 6 weeks or so. Towards the end of the time, I just use one of these colour crayons to touch up the bad patches. These are available in department stores, and are a lifesaver!


I'm loving my hair stylist Kathleen from Adoux. She is not only fun to talk to for the almost 2 hours it takes to cut, colour and style my hair, but she really knows what she's doing, so I feel like I'm in safe hands.

What do you think? Hair is one of those things that we women agonise over. Colour, style, frizz, volume, health. I've gone through stages where I've wanted to change it up, and I really want to grow it longer, but with my naturally curly hair that takes forever! But I'm getting there slowly. I don't think I'll ever cut it short - it just goes really wiry and out of control. Long suits me best, and right now I'm loving the length, the very subtle layering and the side fringe. I keep thinking I'll change it and do something wild and different, but in the end I keep coming back to this.


Wednesday, August 13, 2014

Shopping in Greytown - Part II of our Weekend in Martinborough

This blog post has been waiting to be written for weeks. Funny how when you decide to dedicate most of the working day to writing, somehow, weirdly,  my blog has suffered. I have finished 2 books though, so that must say something.

When we had our weekend away in Martinborough, as we drove through the little towns smattered along the highway, Greytown was the one that really caught our attention. Beautiful old villas and homes, and a main street with their shop front facades that make you feel as though you're stepping back in time to old fashioned New Zealand - except with coffee. We loved it! So we came back to spend the morning there on our last day.


Years ago, before I had children, I loved to shop in antique stores. It is such a luxury! Old books were my weakness, but I seldom have time for browsing through shops these days, so it's always a treat. And Greytown is simply brimming with shops full of lovely old things.





I loved this blue and white platter, because it is Foley. And Foley is my Great Grandfather's last name. I don't think there is any connection between the china and my particular Foleys (they were printers and farmers), but my grandmother collected a few Foley patterns, and it is nice to carry on the tradition. This one was very badly cracked and stained though, so at $95, I didn't think it was worth buying.


It was rather fun finding these little shops down some side-street alleys.




Greytown is full of buildings like this, that have been restored to their former beauty.




Another lovely, rambling antique store.



This little shop had hand-made delicacies, like syrup and preserves and candy. The Quince syrup was my favourite.


 We loved this store that sold handmade pieces from New Zealand artists and New Zealand nostalgia.


We did buy one picture here that we fell in love with. I'm saving it for our new home before deciding where to hang it, but isn't he adorable?


After our morning of wandering down the main street of Greytown, we drove a little further north, towards Carterton to a French bakery which had been recommended to us.  The Clareville Bakery. Apparently, we were told, they make and sell the best Cronuts.


A good cup of tea was just what was needed after a morning of antique shops, and they weren't kidding about the cronuts. The best, lightest, creamiest cronuts I've ever had, and they were so good, we called in on our way home the next morning to get two more. It's a good thing for my waistline that I don't live close to this bakery.




The last time I was in the Wairarapa was many, many years ago, and it was so much fun to go back as an adult and see this area. If you ever get the chance to visit it's so beautiful with rolling, green hills and farmland dotted between the towns. The area is booming with vineyards and restaurants and boutique shopping. We loved it. I would relish the chance to visit this area again.
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