New Bike

Luke has been keen on having a go on the trike outside with the kids, but has no idea what to do with the pedals. He can stick his feet on them, but the idea of pushing with one foot, then the other is crazy as far as he's concerned. Which means I have to push him. Fun.

So on Upside of Down ( NZ online community for parents of children with special needs, and in particular DS) recently, there has been an ongoing discussion about our kids and bikes, and what is successful and what has not. One mum had seen one of these bikes and raved about how well her daughter did on it, even though she is not yet walking. There are lots of two wheeled runner bikes on the market, but apparently (don't quote me on it!) this is the only one with three wheels, is the lowest to the ground to begin with, and converts into a 2 wheel running bike, as well as having the ability to adjust the seat height by moving turning the bike frame up the other way, as well as moving the seat up and down.

I was a little sceptical at first, as they are quite a lot more expensive than the standard two-wheel type, but seeing as several parents raved about them I took Luke into the shop in Christchurch to have a look. He can ride a ride-on, but has never really steered it properly. He tended to lift the front to steer, and not turn the wheel. So I put him on it in the shop, and he was away! Mum and I told him to turn the handle bars to turn a corner, and I couldn't believe it when he did!

So this is the result. It was going to be for Christmas, but seeing as I have no self-control, plus the weather has been so lovely, he has had it for 3 weeks already, and he absolutely LOVES it. So do the others, but they get kicked off it by me!

Ben

This is Ben with the sculpture he and Neil made for Country Day at school. For those of you who are not familiar with Country Days, Ben goes to a little school in the country where most of the parents are farming, so on Country Day the kids bring in their pet lambs and calves, as well as dogs, cats, goats, ponies and other pets for competitions such as the fastest drinker, leading and calling, and the best pet costume. There are also entries for baking, floral displays, the iconic 'sand-saucer' and 'aqua jars'. Ben and Neil created Dumbledore from milk bottles, as the theme of the day this year was 'Milk'. They won first place. Ben is being Harry Potter, in case you aren't sure!

This week Ben's class were having a spelling test. All was quiet. The teacher called out the next word, 'cemetery'. Children were diligently writing their attempts down, when my son calls out "If you can't spell 'cemetery', can you write 'graveyard'?"
The teacher tells me she was in stitches. That's Ben for you!

My Boys

There are lots of things, some good, some not so good, that you can learn from an older brother.

Spring Holidays and Back to School

We have just finished the first week of the last term of the school year, after two weeks of spring holidays. We had the most amazing, settled, warm weather, which was just lovely and not what we were expecting! We spent lots of time in the garden and around home, and also had a visit from Grandad who lives in Australia, and Uncle David and Aunty Nic, who live in the UK.

Luke has decided to have a growth spurt, as well as getting into a fair bit of mischief around home. As you can see in the video, he has worked out how the hose works, and loves to squirt the dog, his siblings, and his mother, especially in the backside as she tries to turn the tap off ;)

He is pretty pleased with himself!

 Luke also embraces his feminine side when playing with Emily. He's getting good at tucking the baby in for her buggy ride...

...and following his big sister around...

 ...but 'buggy wars' are a purely Luke invention- and I'm not sure Em approves!

 We started swimming lessons this week, as he insists on getting into the bath clothed all the time. Don't worry, the plug is well out of reach. He liked all the bits in the lesson where he didn't have to do as he was told, whinged and complained through all the bits where he did have to follow instructions (and I thought all children with DS were soooo happy!) and was generally stared at by all the other mothers. He also managed to pull the halter neck of my togs undone, luckily I realised before I gave an x-rated swimming performance in the toddlers' pool. I came home feeling a bit deflated, and realised that I find it hard going to new situations- I never remember in time that we are a little different and find it tricky to be stared at. No-one said anything though, and I can't decide if that is better or worse than having people make stupid comments or asking the same old questions. Having a child with DS is just like having a child without it at this point in time, except with the others, no-one stared constantly! But maybe they were just staring at my tog malfunction...

 Here is Luke after another bath. This time with Ben after swimming. He loved the sound his boots made full of water, and proudly squelched around the lawn.

 Then he and Ben stood in dog poo. Ben proceded to wipe it all over the patio, so I took him down to the hose to wash it off. (At this point I didn't realise Luke had it on his shoes.) Then I went to clean the water off the new carpet and found Luke inside with it all over his shoes, and poo prints all round the new lounge carpet. So I was on my hands and knees, with the three kids locked out, crying and banging on the glass, wanting to come in as I scraped poo off the carpet. Fun. And ironic considering it was poo from the same dog whose vomit necessitated the new carpet in the first place. Loving her right now.

 Anyway, here are some of the things I like about spring. This is the first flower on the magnolia I planted last spring.

 And the daffodils and tulips I also planted last spring.

 We also found a nest in our wood shed, which now has 4 large baby birds in it. One of which Ben 'helped' out yesterday, so I had to go and find it and return it to its nest last night, in the dusk.

We had the concrete guys and truck to concrete around our magnolia at the back of the garden, which we have been meaning to get done for the past 21 months we have been living here.

 Luke and Neil mowed the lawn. Neil has a thing about the lawn. Luke does not.

Dad and his helper.

So lovely to think that last summer Luke wasn't walking, and now he's running everywhere and just as capable as other kids his age- once he started there was no stopping him.

Spring has Sprung!

 Last Monday we went on a trip with Playcentre to a local garden which is open for viewing, and for weddings in case any of you are interested ;)

This church was moved here from its original site, which was out in the country near Neil's school. 

 Emily and Luke testing out the pews.



 Luke's new pastime is running...away.

 The main event- the daffodils. I love them!

 Emily was not keen on posing for the camera and Luke refused to get out of the buggy.

 We also got to feed some Highland Cattle, which Luke LOVED.

 He would still be there if he had his way.

He was also pretty keen on the owner's vintage car collection. Again had to be dragged away...

On the medical front, his thyroid and coeliacs retests came back normal, and he does not have the coeliacs gene. I don't know how that changes the risk that seems to increase with DS, but less than 10% of people with coeliacs don't have the gene, so it's definitely in our favour. Not that it's the end of the world if he did have it, just that three kids are difficult to feed sometimes already...

Eyes in the Back of My Head

I was running the bath tonight, and I left the bathroom to get the kids' pjs ready. I lock the door from the outside, so a certain someone doesn't fall into the bath. I came back and unlocked the door, and this is what I found.

On the positives, he now has good wrist rotation- evidenced by his ability to turn the lock, and good finger strength. It's not easy to open the lock from the outside.

SO no more leaving the bathroom while I run the bath.

Poor Ben is not well, with a sore throat and temp since Friday. I think it is tonsillitis, but the Dr did not, and after some pressure from me he took a swab. No results yet, but if he is still unwell tomorrow we will be going back. He was having an iceblock to help soothe his throat.

This little brother copies everything his big brother does. Luke is not keen on cold foods like icecream, and has only occasionally tasted the odd bite, and wouldn't even consider an iceblock until he saw Ben having one last night. Then he was at the freezer opening the door and helping himself! He did really well and ate almost the entire thing.

As you can see, he has the perfect tongue for licking an iceblock!

Please Help Our Friends the Bearsley Family

Our friends the Bearsley family need your help. They are in a competition to win a new kitchen, and need you to vote for them. They are part of the DS community- their third child Jono (3) has DS as well as multiple other medical problems, including heart surgery as a young baby, coeliacs disease, drinking issues, and bouts of pneumonia and bronchialitis.

Their kitchen is plain dangerous especially with 4 young children in it, so please follow this link and vote. They are #8.

Thanks so much.

The Shaky Isles

We were woken at 4.35am by a magnitude 7.1 earthquake. I heard it coming and jumped up and got Luke out of bed, and stood with him in Emily's doorway. I could see she was ok, and she woke up and came to us. Neil was slightly slower- "What's going on?"- and grabbed Ben down from his bed (he sleeps in a mezzanine bunk thing) and came to the doorway too.

The earthquake seemed to go on forever and was very rocky and it made a loud rumbling noise, like a truck. The big kids were pretty scared, and Luke was just grumpy that we'd woken him up! We all jumped into our bed once it was over- next time we get a new bed, it needs to be bigger ;) Luke was grizzling and carrying on, so after the first few aftershocks I put him back to bed. The others were still scared and the aftershocks kept coming for the rest of the night. In fact we have just had another as I sit here, and it's 5pm. I felt bad putting Luke to bed but he was perfectly safe and I am just on the other side of the wall from him. I thought about how it would look if anything happened to any of us and the 4 of us were together and the little one with DS was not- would look a bit suspicious, but that's not the case at all. He is the one I went for first because he is the littlest.

Anyway we have not had any damage, but my step-sister and her partner's house has been damaged, with the concrete floor buckling and the walls having big cracks through them. The lines in the centre of their street are now wiggly I've been told and there are cracks in the road and driveway. We live an hour away from Christchurch, so luckily we have less damage than they do. Mum and Chris had no power all morning, and as it snowed there yesterday it was pretty cold. The sun came out today though, so that warmed everyone up.

You can see some of the damage here if you haven't already: http://www.stuff.co.nz/national/4094986/Army-wanted-in-quake-hit-Canterbury

We haven't had much sleep since the earthquake hit, so there are some very tired kids and parents here- think it'll be an early night for us all.

The Tooth Fairy Pays Her First Visit

Ben has had slightly wiggly teeth for a while now, but being a bit of a wimp like his uncle (not naming any names David!) hadn't really had much of a go at getting any out. The Dental Nurse gave him a check up at school just a couple of weeks ago, which he passed no trouble.

Then I discovered his next tooth had appeared behind the front bottom baby teeth. Nice. I have a shark for a son. So the front baby tooth must go, I told Ben. I had a go myself but no joy. We decided to wait for Dad to get home with the pliers and promptly forgot all about it.

The next day Mum came to look after the kids while I went to work. Except they were all sick, so I stayed home and she helped me out. In the afternoon I went to the supermarket alone (bliss!) and got a text from Mum. The tooth had come out and there was a need for tooth fairy funds!

The story goes like this:

Ben has a book called Goodnight and Thanks for the Teeth which contains a list of prices the Tooth Fairy pays for different types of teeth, taking condition into account. For example a clean incisor is worth $2, where a dirty one is only worth $1.50. There is also a list of conditions of removal, for example money off if the tooth is lost in a skateboarding accident, or extra money if it comes out by being attached with a length of cotton to the door. Ben, being the shrewd businessman that he is, but also not brave, decided that the $2 was sufficient and the ways to get more looked too painful for him. So he got a tissue, gave the tooth a tug, and out it came.

So here he is minus his first tooth. You can see the new one in behind, so no real gap.

So the tooth went under the pillow that night, and in the morning it was gone and a $2 coin in its place. He came running into our room all excited, because he saw a tooth on the floor and thought the Tooth Fairy had dropped it by accident. Turned out to be a shell!

He rang Nana to tell her the good news, and told her all about how he'd seen the Tooth Fairy flying around his room because he was only pretending to be asleep, and how her wings were shiny and see-through.

He has imagination, that's for sure ;)

Long Time, No Update, and New Tricks

It has been a long and cold winter, and we have had to spend lots of time inside as it has been much wetter than usual. There have been lots of new games to teach Luke, and he is literally fought over- both of the big kids want him to play with them, and definitely not the other. So Luke has been trained as a Knight's Apprentice...

...if you look carefully you can see the knight attacking his sister with a sword in the background. Her crime was to suggest she could join in, being a princess with fairy wings. But this castle has no room for princesses, apparently.

Here he is with proof that males can multi-task. (If drumming on the dog's water bowl and throwing her a ball count...) We are in the process of getting a whole new houseful of carpet due to that dog. I felt sorry for her on the coldest night of the year and let her stay inside, even though her kennel is insulated and she has an electric blanket. She repaid me by vomiting on the carpet in 3 places, which burned the colour of her dinner into the wool. Lovely. I am REALLY looking forward to having everything ready to be moved out to get the new carpet in. Should be hardly any work at all.

Neil spend this afternoon putting deadbolts on the doors. Luke can now (well he could until the dead bolts were attached) unlock and open the sliding doors onto the lawn and sneak out. He doesn't care if it is wet or cold or muddy. He just wants out! He's an outside kind of boy.

He's also a climb into the bath and turn the tap on kind of boy. Clothes are no impediment. The problem is that the big kids need to access the bathroom to wash their hands etc, and the only way to keep him out is to lock it from the outside.

This does not make him mummy's favourite!

Luke has also given up his day sleep. He has lasted longer than any of the others, who have waited until their mother was very pregnant with the next baby and DESPERATE for a rest during the day to stop having theirs. Luke does not have this excuse, so he has waited a little longer, but now only sleeps if he falls asleep on the way home from Em's kindy or Ben's school. Or if he has been worn out fighting in the crusades and falls asleep in the arms of a beautiful maiden ;)

She's such a mother hen.

She even tucked him in and gave him a toy.

More hijinks on the couch

Worn out again. I can't even move him into bed once he's out any more, he just wakes up.

Em wanted her face painted as a red cat. She loved it, but couldn't understand why Luke cried and hid whenever he saw her!

Who wants to push a doll around when you have a living one?

We are off for repeat bloods this week. The last ones were a bit iffy, so hopefully things have come right. Luke's thyroid was hyperactive, which is not often seen in children with DS and the opposite of the sub-clinical hypo-thyroidism he had nearly 2 years ago. Since then his thyroid has been fine. And the some of the coeliacs markers were quite high. I am hoping those have come down- I know there are many worse things that could happen, but I could still so without it. At least there is no gluten in sand!...

Shaking those Maracas

This is Luke watching a dvd put out by his music therapist. He loves shaking his maracas ;)

If you are interested in the dvd,  you can get them at Julie Wylie Music and if you mention the Champion Centre (which is where Luke attends therapy) $5 from the dvd is donated to the Champion Centre.

Dunedin Holiday continued...

Here we are on a winter day at St Clair beach. Someone is not too keen on sandy hands...

...but she is keen on posing for the camera!

Then on to the Cadbury Chocolate Factory...

...where we went on a tour and the kids sulked and squabbled over who had the most chocolate in their loot bags...

...and Luke did a sicky spill all down Neil's shoulder and onto the floor!

So it was not as much fun as it should have been but we still came away with LOTS of chocolate :)

Ben with a vintage van which will be out on duty this week for the Chocolate Festival.

The two littlies all rugged up in the cold!

The steepest street in the world. View from the top...

 We took the car up as I couldn't face dragging the kids up! I was worried that the car wouldn't make it- it didn't seem right- but of course we did.