Life with Luke Skywalker

It's been a big month.

2011-05-30T11:13:00.000+12:00

Easter went down well with this lot. Mind you, who doesn't like chocolate bunnies? The good news was no chocolate on the carpet this year!

Some people even quite like to eat the foil.

Is it bad to let your kids have chocolate for breakfast at Easter?

If so, it's way too late.

Ben is now at an age when we only get cheesy photos of him, or goofy shots. Not sure which is worse.

On the easter egg hunt.

Some people are better at looking than others.

Guess who loves bubbles?

And swings?

Emily started school. It took a few days, but now she's right in the swing of it.

See what I mean about the big brother?!

There's no show without Pnch (or Buzz or Woody).

There was some mischief...

along with his partner in crime. Weimaraner anyone?

And we got ourselves into some tricky spots.

We started kindy. Can't believe he's 3 already.

Luke started as he meant to go on- throwing sand at the teacher on his first day.

There were leaves to be tidied.

And breakfasts to be eaten.

And things to show Daddy at kindy.

A dog to wash- notice how Daddy somehow managed to get the boy's head wet too.

And bed time books to read.

Luke also had his adenoids and tonsils out last week. His ears were cleaned out so the surgeon could see in, but no grommets were needed. He's doing well now, but it was a rough few days. So far we're pleased, his breathing is so much quieter, and he is sleeping so much better. Darth Vader has left the building!

Here's hoping the next month is less eventful!

Now We Are Five

2011-04-26T09:13:00.000+12:00

Emily's last day of kindergarten was Friday the 15th of April. Her birthday was the next day, the first day of the holidays, so she has a bit of a wait before she starts school.

At Em's kindy they have a wee celebration for the children who are going off to school. (For those of you unfamiliar with the NZ system, Kindergarten here is for preschoolers from about ages 3-5. Ours still has the traditional sessions, with the littlest attending 3 sessions a week from 1.15 to 3.15 pm. The bigger kids attend up to 5 mornings a week, from 8.30am to 12.30pm.)

The birthday kid gets to choose their favourite book to share. Em chose Wonky Donkey, and they all sang along to the CD. They also choose their favourite learning story to share, and Em's was called Emily Creates. They make and decorate a playdough 'cake' and blow out the candles, and the child leaving gives the kindy a present if they choose. Em gave the kindy a Slinky Malinki book and some decorations for the kids to use with the hot glue gun.

Then they sing Happy Birthday, and the birthday girl got to bring her profile books home to keep.

Saturday morning was the main event. Marked by present opening and some bad behaviour from the child concerned.

The brothers were very generous and even helpful. This did not improve her mood.

The friends arrived, and there was a lot of pink involved.

We were having a tea party, so we decorated cupcakes. I ended up making the icing with 6 little helpers, which wasn't in the plan, but ended safely.

Even the boys were keen to have a go, just not using the pink icing.

The food went down a treat, although some little girls had eyes larger than their stomachs, and some food evidently looked good, but was not fit for human consumption!

Emily caused a bit of a ruction by wanting to always sit next to one particular child who was wearing (in Em's opinion) the most beautiful dress. She's deep, my daughter.

Then it was time for the cake. A lovely concoction created by the Daddy, who is obviously in touch with his feminine side ;)

Then it was time for the nail polish and other girly activities. Notice the close proximity to THE DRESS.

Later on the boys had some fun with man stuff.

The next day we went to The Wiggles concert. Ben did not come, as he had informed me he was too old for that. He was not however too old to covet one of the helium balloons which came home with us.

Luke loved it, and Emily, who is usually quite shy and attaches herself to my leg at such events, ended up dancing.

We even got to meet Murray, the red Wiggle.

So all in all a big weekend. Next stop is school- not sure this mummy is ready for that. I have a week off from being a kindy mum, and then Luke starts afternoons. They're all growing up too fast- which is not what I say when they're up in the night!

Where have we been?

2011-04-02T07:39:00.000+13:00

Well, it's been a long time. Again. Hopeless.

There's been a lot happening in our lives of course. We are nearly at the end of the first term of the school year. I have had all 3 kids in swimming lessons all term, and have to get in the pool with Luke. Love that- especially when I am the only mum in there because he is just so much shorter. Can't they get a shallower pool?!

Emily has had 3 school visits, and turns 5 in a couple of weeks. She has to wait to start school though, because her birthday is the first day of the holidays. She has had some issues with the uniform too. I can't wait- one less problem in the morning. How can you be 4 and have trouble deciding what to put on every day? Also, how come she is surprised to see that the uniform top is jade green? Ben has been wearing the uniform every week day for 5 terms now, so surely she must have noticed at some point? Apparently not, because the very idea of trying on a top of THAT COLOUR caused a meltdown in the shop the other day.

Ben has had Rippa Rugby games for the past five weeks, and now Saturday soccer starts for the winter today. Luke is now not keen on sitting in the buggy for an entire game, (not that he was too keen on that last winter either), so I will have to chase him off the field repeatedly. He loves soccer, and I know he just wants to join in. Ben is also going through a Harry Potter phase, so often has a lightning bolt scar drawn across his forehead.

Luke is coming on in leaps and bounds. His latest sentence was a very clear "I love you". Although it was preceded by the name "Ella", who is the naughty dog. I'm pretty sure he didn't learn that sentence from her, so she is on half rations for stealing my thunder ;)

We have missed a couple of therapy sessions due to the Christchurch earthquake. I was teaching that day, and mum had Em and Luke in Christchurch with her, so once we realised the severity of the situation it was a nervous wait for an hour or so until we heard from them as the phone systems were down. They had been shopping and were in a pet shop looking at the fish, and mum said she was worried the tanks were going to fall down on them. Luckily they were on the east side of the city, where the damage was not too bad, and were able to bundle the kids into the car and out of town, straight home. Phew.

Some of Luke's therapists have lost their homes. Mum's place had very minor damage, but lots of the neighbour's homes are uninhabitable. We had Mum and Chris staying with us the first few nights as there were no services on, and then had my step-sister Kate and her partner Kerry visit, as well as Luke's friend Aidan's family overnight. All have suffered considerable damage to their homes, but luckily were unhurt. So things are beginning to return to normal, but the damage to their houses (in Kate and Kerry's case, a new house is needed) is going to take a long time to sort out, and there is a lot of uncertainty for them.

Luke is due to start kindy next month. He is entitled to some teacher aide support at Playcentre/kindy from when he turned 3, but this hasn't worked out and has been pretty stressful to sort out. The person organising it hasn't been very organised, so when I started asking last year was told it was too soon. But surprise surprise, when the term began back, two weeks after Luke's 3rd birthday, I still hadn't been contacted. Annoying. Then while I was waiting to hear back about when the meeting with the teacher aide and Playcentre etc was, I was working at a fundraiser for the Playcentre when a woman there announced to us all that she was going to be working at our centre with a little boy called Luke, starting from the Monday. I do not like surprises, and so poor Neil had to deal with that when I got home at 11.45 pm. Hopefully things are sorted now, and so when he starts kindy things will be in place.

I also became an aunty on my side of the family for the first time, with Samuel being born (my brother's son). Unfortunately they live in the UK so it will be a while before I get to meet him.

Baby Sam

I have also been closely following the journey of a friend I met through UpsideofDowns (not in person yet, but hopefully one day). Bridget often leaves lovely comments on my blog, and tells funny stories about her son Pete. Pete is 7, apparently very naughty- hard to believe as he has the face of an angel- and had DS. Pete has been battling leukaemia for several years, and was in remission at the end of last year. Unfortunately it has returned and he is in the fight of his life. He is one tough cookie, and so is his mum, so please spare them a thought. We have been so lucky with Luke's health so far.

As you can see, some things never change!

The Birthday

2011-01-23T15:25:00.000+13:00

What could be better than Elmo wrapping paper?

A fire engine in Elmo paper, of course!

Yay!

And a fire station from Mummy and Daddy.

More pressies- super yay!

Party time

Checking out the cake Daddy made and iced :)

Aidan steals the show with his cheeky smile.

As you can see, he's a real pro at blowing out the candles. And Aidan is all set for his turn in a couple of months.

Happy birthday our lovely Luke!

Toilet Training

2011-01-16T07:50:00.001+13:00

We have made a start. Luke has been happy to sit on the toilet for a while now, and occasionally did a wee. But seeing as it's summer, Neil is home on holiday, and Luke is nearly 3 I decided it was time to bite the bullet and go for it.

We started with putting him on the potty right before he got into the bath. This was mainly because he would often get in and wee right away. But I noticed that if I put him on the potty at any other time of day, he would try to get undressed first. Around that time I read another blog where a gorgeous wee boy was getting naked every time (very cute), as well as a mum of an adult with DS mention that she knows of a couple of adults with DS who do the same- the key for them being to make sure that the door is locked! So I decided on a change of plan. No more weeing in the nude before the bath, and we now just use the toilet. Start as we mean to go on.

Things have been going pretty well. We have just gone straight to undies and shorts, which means I have to do lots of loads of washing during the day. Today is day 5. So far Luke has progressed from wetting every few minutes (very tempting to go back into pull-ups) to much longer periods of time- up to an hour or so. He has gone from having no idea of when he is going or is wet to holding himself and sometimes coming to show us. Occasionally he has come and taken us to the toilet. He is definitely more aware of what is happening, because his pull-ups are so absorbent that he just had no idea. Having him in undies gives him that feedback.

We are also working on teaching him how to pull his pants up and down. This means occasionally he takes them off and appears without them, but we are getting there!

It would be easy to give up, but I am seeing progress, so for now we will keep going.

Health-wise Luke is well as it is summer, so fewer bugs and things about. He had been getting up anywhere from 5.45 to 6.15am, and that is not so popular when the whole family is on holiday. For Christmas one of his presents was a monkey sleep training clock, which my other kids got for the previous Christmas. He was rapt, and it is working pretty well. When Luke goes to bed we close the monkey's eyes, and the monkey wakes up at the time you set the alarm for. This is either quietly or it plays a jungle theme. Luke loves it and on the mornings he is up before the alarm, one of us goes and lies with him until the monkey wakes up. He definitely knows what's going on and looks at the clock expectantly until the monkey, or 'key' as he calls it, wakes up. Then he's up like a shot!

We had an appointment with the ENT before Christmas. I had requested an appointment just to check him out last winter as he was always full up and is a bit of a snorer at times. I know this is an issue for our kids. Neil looked at me when I was going on about it, thinking that he wasn't that bad, but I was determined to get to see and ENT, so a little exaggeration wasn't going to hurt. Luke also failed his hearing test earlier in the year, but his ears are full of wax. How anyone can hear properly like that is beyond me. So I finally got my appointment, and went along with Luke and Emily in tow. The doctor (not a talkative one) looked in his throat and ears. I told him about the hearing test (luckily I had taken the letter from the audiologist with me) and then announced he needed tonsils out (huge and blocking 3/4 of his throat), adenoids out (didn't look but could tell they are big by Luke's breathing sounds), and he will clear out his ears and insert grommets if needed. Apparently he has so much wax in there that it would hurt to even put the instrument in properly to look.

This took all of 5 minutes. I was speechless, which takes some doing. I couldn't even think of any sensible questions to ask. So we are now waiting for an appointment for the op. I am really cross when I think of all the times I have taken him to the GP with a cold and they look in his ears and tell me he's fine or that he has one ear blocked with wax, but they think he's fine. Turns out, he's not. I will be saying something the next time I am in there. Luckily there is one doctor at our practice (not our GP but I can make an appointment to see him instead) who had a sister with a different trisomy, so has an interest in kids with DS who will be a bit better at handling these kind of things.

Emily's cast comes off on Wednesday, which will be great for her. It's not much of a summer when you can't get around very well and have to wear a cover swimming.

Luke turns 3 in 3 more sleeps. Can't quite believe it. He will start afternoon kindergarten in Term 2, at the same time as Emily starts school. They are growing up so fast.

Photo Fest

2011-01-14T08:39:00.001+13:00

Well, what can I say. We have been busy, and I have been slack. So the only thing to do is get back on the horse.

In December we went to the local Down Syndrome Association Christmas Party, which was put on by a cricket club for us. I don't know why, but it was a lovely place, and we had fun. There were pony rides and a lolly scramble, a barbecue and tea and scones, and of course Santa and presents.

Emily does not 'do' Santa. Firstly he is a man. Secondly he is a stranger. Thirdly he has a beard. So her rep (Ben) passed the gift on to her. She does 'do' presents.

Luke does 'do' Santa. In a big way. Firstly he is a man. Secondly he is a stranger. Thirdly he has a beard.

Santa kindly gave Luke a whistle. A loud whistle. Luke is good at blowing whistles long and loud. I can't think where that whistle has got to, but yes, it did make it home.

We also went to the Special Children's Party, against my better judgement. We won't be going again, but Luke had fun. Only fitting that Luke Skywalker had his photo taken with some storm troopers.

Luke and Aidan with the fire engine. This was about 10 seconds before Aidan went missing. He was found heading for the exit. My thoughts exactly Aidan.

Luke and the fireman. Need I say more?

Santa and a couple of fans.

Christmas eve. You may notice Luke is eating a Christmas mince pie. We narrowly avoided a riot, as we had more. Luke thought Santa didn't need any more treats, judging by the look of his waistline. The other kids disagreed.

Luke has mastered the skill of ripping open presents. This will come in handy on his birthday next week.

His favourite present.

4 pairs of Disney princess shoes and a mermaid outfit. What more could a girl want?

A pink scooter of course!

And a bear with a tutu!

Just because he's cute.

And cheeky!

Guess who broke her leg on the 30th? On the new million-dollar trampoline that is 'The world's only safe trampoline'. Which replaced the old unsafe trampoline, with a record number of zero serious injuries in the 5 years we have owned it.

Guess who likes candy canes?

We went swimming.

Luke learned exactly how deep the water can be to safely sit down in. The hard way.

Emily modelling the latest beach chic.

Coming soon: health update and toilet training progress. Not for the faint hearted.

New Bike

2010-11-20T15:40:00.001+13:00

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

2010-11-20T08:22:00.001+13:00

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

2010-11-13T10:33:00.000+13:00

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

2010-10-15T17:35:00.000+13:00

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!

2010-09-27T10:09:00.000+13:00

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

2010-09-12T18:09:00.000+12:00

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

2010-09-05T07:43:00.000+12:00

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

2010-09-04T17:13:00.000+12:00

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

2010-09-03T10:10:00.000+12:00

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

2010-08-15T20:09:00.001+12:00

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

2010-07-17T11:55:00.000+12:00

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...

2010-07-16T16:27:00.000+12:00

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.

Dunedin Museum

2010-07-12T16:48:00.001+12:00

This is a boy who only started walking 12 weeks ago. It is hard to believe! He loved this foot keyboard and we had to drag him away. Too much fun!

Dunedin Holiday

2010-07-10T07:27:00.000+12:00

Last Saturday I packed up the kids and the car (easier said than done) and took the kids to Dunedin for a holiday. Neil had been in Queenstown for the NZ Primary Principals Federation conference, so he got to have a peaceful bus trip and met us there.

We stopped after about an hour to visit Aunty Robin, now known as Great Aunty Robin, hehe. Then we carried on for just over another hour, where we stopped at the beach to check out the Moeraki Boulders.

My kids love collecting things from the beach. Emily is an especially good magpie. She would bring home armfuls of stuff every time if I let her.

Luke spends most of his time heading for the water. He is such a lemming! All the kids were keen on the idea of a swim, which is lovely in theory, but not in the middle of winter on a 10 degree day!

Ben wanted me to take this photo to show his dad the seaweed. Don't ask me why.

Happy families (wasn't so sweet a few minutes previously after an hour in the car...)

On the famous boulder. I even made the cut, kind of...

Next stop, Dunedin.

Here we are in the butterfly house at the museum. The kids loved it, although Ben was a bit miffed that a butterfly didn't land on him. It would help to stay still for a few seconds if you ask me! Luke wasn't that keen on the butterflies to begin with, and may have attempted to swat them, but he loved the fish and tortoises at the bottom. He wanted to have a swim with them, but his mother wasn't as keen on the idea. Party pooper.

There was also a kids science area there, which we loved. Luke's favourite was the keyboard he could walk on. I had to drag him away.

The Bandit Hat

2010-06-26T07:41:00.000+12:00

A couple of weeks ago Fantastic Mr Fox came out on DVD and, seeing as I am a big fan of Roald Dahl and Ben and I loved it when we saw it at the movies, we got it. This has unleashed a new obsession in Ben. For those of you who have boys, you will understand the obsession well. Ben has had many in his 6 1/2 years, including Lego, Star Wars,and all things Army.

This is probably his favourite scene from the movie. Notice the 'bandit hats'. Because Ben did. And he wanted one. REALLY wanted one.

So being the kind mother that I am, I said I would knit him one. And so the fun began. I searched the internet for a pattern. Couldn't be too difficult, could it?

The first hitch was that Ben was quite specific. It had to be a 3 hole bandit hat. Not one where you could see the face, like this vintage WW1 pattern.

Seeing as Ben is not the best listener in the world, I liked the idea of the ear flaps. Ben did not.

Then we went from funny to...

...crazy to...

...I don't even know what to say about these! But they were all wrong.

In the end we compromised on a two-whole model, and here is the finished product, modelled by Ben.

One bandit hat for the bandit in our house. The things mothers do for their children!

I might add that to get it finished there was continual nagging, and I even sat in the car in the dark driving home last Sunday and knitted in the dark!

Snow!

2010-06-13T15:05:00.001+12:00

It snowed today, which is the first time Luke has seen the snow. It only snows here every couple of years, and today it was enough to settle and let the kids have some fun. Now the sun is out and it is almost all gone.

As usual Luke headed for the sandpit.

He was pretty keen on throwing snowballs like his big brother. I had the job of making them for him.

Ben is getting to be far too good a shot for me!

Making snow angels

Pink snow angels

Pink poppets aren't too good in the cold.

The grumpy fairy on her way inside :)

Attitude tv

2010-06-06T21:37:00.000+12:00

In March I posted about Attitude tv, which had done a really cool episode on the Special Olympics, but my link to TVNZ would only work if you were in New Zealand. Well I have now found it on youtube, so here is Special Olympics: The Mission Part One and Part Two. The first is about 5 mins and the second 6ish, and well worth the watch. Enjoy :)

The First Girls' Weekend

2010-06-06T08:11:00.000+12:00

My friend Trina and I took our girls on our first ever (and hopefully there are many to come) Girls' Weekend last weekend. The main event was Disney on Ice.

This is my cousin Brigid with Emily.

She was enraptured.

So was Kate. Notice the compulsory fairy dresses.

Then a spot of girly shopping :)

We had a great time. Thanks for coming girls!

On a Luke note, there have been lots of new skills he has developed lately. Like putting the phone in the toilet. And opening his bedroom door to come out at night. And turning the oven off when I am in the middle of cooking. Good thing he's so cute.

The boys brushing their teeth, which is one of Luke's all-time favourite things to do.

Shame he's using his sister's toothbrush.

Luckily I keep her busy in the kitchen, so she'll never know...

On a therapy note, we are very excited that Luke's wee mate Aidan is moving into our new clinic starting the next time we go, so we are looking forward to that. We were there on Thursday, and Luke had a fabulous session, so all is well in that dept. He can kick a ball, and we are working on hitting a ball with a bat and making his base when walking narrower. He can sort some shapes and is matching colours and we are working on his forearm rotation, but as he uses this successfully to turn on the hose and flood the lawn, and to turn the oven off and on, I think he is getting there! His speech is coming along nicely too. He is beginning to use simple sentences, which although not that clear, include things like "I'm in the box". He also has a very clear "NO!" and understands 'stop'. I thought he didn't get it, and was busy saying and signing stop when he tries to run away when I am getting him dressed and he pays no attention, but he turned around, put up his hand and said it to me. There is a difference between 'getting' something and choosing to do it!!

Lightsabers at the ready!

2010-05-14T16:26:00.005+12:00

Busy, busy, busy.

2010-05-05T14:37:00.001+12:00

I can't believe we are only in the third week of this school term- we're so busy again it seems like we never had a break. Luke and I have started going to Playcentre again recently. For those of you who are not Kiwis, Playcentre is a New Zealand Early Childhood Education centre, which is run by parents. There is a trained supervisor, and the parents also do training and have turns being "Parent helpers", organising activities and the like. Luke loves it and it's a great way to let him do lots of painting and messy play without having to be super mum and getting it all out at home.

But...because there are always parents doing training, there are always parents doing observations on children for their courses. So when I filled in Luke's forms last Friday, I put that I don't want him being observed for training purposes without my prior consent. When I told Neil this, he looked at me as if I was mad. After all, I am a teacher, and I know it's not a big deal. Except when it is. As I told him, there will be a component in some of those courses which focuses on teaching children with special needs. There will be others who think it will be good to choose him because he stands out a little. So I could end up having him observed far more than his fair share. Just because he's a little different.

So that was Friday. We rolled up on Monday, and within about 15 mins I was approached by a mum doing one of the courses, asking if she could use Luke as one of the children to observe. I agreed, as I know this mum has a soft spot for Luke, and is lovely with him. Not a problem.

Then about half an hour later, I was approached by another mum, who had read that I wanted to be asked first, and who is doing a course which requires her to observe a child with special needs and comment on the adaptions that Playcentre has made for him. Which from my point of view total 0- because he simply hasn't needed any. So again I agreed. This will involve her finding out about "Down syndrome kids"- first lesson done already! I know it's all education and that spreading the word is good, but when do I get to just enjoy my kid for who he is, without having to educate all the time?

Tomorrow we are off to our second session of the new clinic for Luke's therapy. The first week had its ups and downs, and that's about all I want to say. Some of it was great, and some not so much. So here's hoping for an improvement, because his last group was fabulous and the highlight of my week.

Luke and Neil watching the footy

Licking the beaters for the first time ;)

Can we fit any more sprinkles on those cupcakes??

Didn't realise the drawer on the new cabinet was for storing small boys!

Ben finishing the Cross Country. He's in the middle in navy, looking down at his knee, which is bleeding. Apparently he and the horse jump did not see eye-to-eye. I am very proud of him for carrying on, even with the blood. A very brave boy.

Special Olympics

2010-04-21T21:08:00.000+12:00

Here's a link to an episode of Attitude which screened here last month. I found it really interesting, and hope Luke will be involved once he get a little bigger. The team travelled to Washington to the headquarters of the Special Olympics. A great story. Special Olympics Episode.

We are off to the Champion Centre tomorrow for our first session in the Early Years clinic. I'm sure it will be fine but I'm feeling a little anxious.

Walking

2010-04-19T14:47:00.003+12:00

I have been trying to get a video of Luke walking, but the minute he sees the camera, he stops!

All sorts of new tricks have come with the walking. Yesterday I found him on the first shelf of the pantry- yes on it! So climbing is here too. And a new opinion of the world, which is different from mine. Oh dear- fun times ahead ;)

I'm a Groover!

2010-04-18T10:00:00.002+12:00

Happy Birthday Emily

2010-04-17T08:58:00.000+12:00

Yesterday my little girl turned 4, which I can hardly believe. Just a year until school. She's getting so grown up! She was born on Easter Sunday, and was such a good baby.

Here she is just a few hours old.

And here she is after her first bath at home.

Her 1st birthday

On her 2nd birthday. We're still on the fairy thing ;)

Making cupcakes on her 3rd birthday. We're still on the cupcake thing too!

And opening some pressies on her 4th birthday, yesterday!

Yes, she did manage to blow them all out first try!

About to eat a kitten...

Happy Birthday Emily!

World Down Syndrome Day

2010-04-08T21:22:00.000+12:00

We did celebrate, and here is a video. I have spotted myself, Emily and Ben, but no Luke or Neil that I could see. You have to be quick though to find us. You will see Luke's friend Aidan though- he's the little guy with hair of a certain shade who is being hugged by a bigger guy with hair of a similar hue. Very cute. We all had a great day. Aidan was also in the local paper- a popular boy!

http://updates.cdsa.org.nz/

Thanks Kimberley :)

2010-04-08T21:15:00.000+12:00

Kimberley very kindly gave me this award last month, and because I am not up with the play at the moment, it has taken me this long to post it. But thanks Kimberley, I do really appreciate it. You can 'meet' Kimberley and her whanau over at http://www.drivingwithnohands.blogspot.com/. She has 3 lovely kids and also has a blog where she posts daily photos which take her fancy (and often mine). Check these out too at http://365kae.blogspot.com/

The rules of the award were to post the award and thank the giver- done :) Then share 7 (yes 7!) interesting things about yourself, then pass the award on to 7 others. I don't know if I can think of 7 interesting things about myself, but here goes.

1. I am an eyebrow raiser. As in one eyebrow. I can use it to stop kids in my class at 100 paces. Very handy when teaching 11 and 12 year olds.
2. I hate watching sport on tv, especially cricket, rugby and soccer (yawn). And my husband LOVES these, especially soccer. And winter is nearly here....
3. I majored in French at university.
4. I have lots of steps- as in brothers, sisters, parents. As in 2 step-sisters and 3 step-brothers.
5. I loved to play tricks on my younger brother, who is a deep sleeper. I would sneak into his room at night, and do things like rearranging his furniture, including his bed as he slept in it, or tangling a ball of wool up around his room like a giant cobweb!
6. One of my earliest memories is of watching a Rolling Stones song on tv with Dad. I have no idea what the song was, but Mick Jagger was crawling through what I remember as cupboards and coming up to the camera with his huge mouth and giant lips and I thought he was going to gobble me up! Still can't stand his mouth!
7. I am not keen on spiders. Started when I was little and found a HUGE one down the loo. Getting better now because I have to put a brave face on it for the kids.
8. I don't eat tomatoes. When I was about 12 I was banned from eating them until I was 16 by my stepfather, on the theory (reverse psychology) that by then I would love them like the rest of the world, but be unable to have them. Don't try this parenting technique at home. Possibly the best punishment I ever got!
9. I hate watching programmes with kids getting hurt in them. Just can't do it.
10. I am secretly a nana. I love knitting and gardening and cross-stitch.

There. Did it. That was hard.

Now here's the easy bit: passing it on to 7 others.

Nan P. Love her blog, and her enthusiasm is catching. All the way on the other side of the world, where my great-grandparents were born, in Ireland. Feel like I know her :)

Sarah who is a great role model for all our kids, and who has a really special relationship with her mum (mom) Joyce.

Cherie who has two gorgeous boys, one with the fabulous name of Luke, who get up to lots of great adventures.

Nick who is a bloke so probably won't appreciate a girly award, but whose blog I think you should read. Always has somgthing informative or funny or profound to share. Just need more pics of Jacob please ;)

Angela with her Trisomy tribe, who always makes me smile, and feel like my life is not as busy as I think it is!

Sharon and her gorgeous 5 year old Maia, who is just off to school, and makes me know it will all be alright.

Beth over at Hannah's Shenanigans, my favourite bits are 'Cooking with Hannah'. Another great role model.

Thanks to you all for sharing your lives and children with me :)

Long time, no see.

2010-04-07T07:59:00.000+12:00

I Neil found it- the cable that is, hiding in plain sight, where we had both looked for it many times. I blame the kids. It could never be my bad looking skills, now could it?? So now that I have access to my photos again, I have gone a bit mad. Lucky you!

Here we are at Mum's on Easter Saturday. It was lovely. Now we are inside with the fire going and rain outside. Never mind.

In case you haven't noticed, we have one walking toddler in the family. We're all very excited, but not as excited as Luke is. Look out world!

And just to prove that he really is a big boy now, he has moved into a bed. I have left the cot up, just in case, but he hasn't looked back. Such a good boy. I had talked to lots of people who have kids with DS and can't keep them in bed, and had myself all worked up that it was going to be a difficult transition. Of course Luke went to sleep and stayed in his bed all night. No problem. One of these days I will learn that these things are a personality issue and not a DS issue! I will save myself a lot of worry. Ben was the one who wouldn't stay in his bed, but he went into a bed because he was climbing out of his cot in the first place, so that was no surprise!

Luke the musician, with his sister the dancer.

Nana's new kitten Millie, who is recovering from an excess of child love over Easter.

Luke is just the latest of our children to discover the cat's bed is a great place to sit. Mostly because there is an electric blanket under it!

No he is not enrolled in ballet lessons...

...but I think this cheeky monkey has out grown his parallel bars!

And yes I do clean him regularly!

I just love this guy!

Attitude TV

2010-03-30T18:45:00.000+13:00

Attitude is a Kiwi tv programme about people living with disability, and the last two episodes have been brilliant. They are about 30 mins long. Last week's one was about Janine, a lady whose son Dylan was diagnosed with Ds before he was born. Dylan had an AV canal defect. They have very bravely shared their story here. http://tvnz.co.nz/attitude/s2010-e3-video-3432946

The episode the week before this one was about the Special Olympics, the Nationals here in NZ recently, and the Attitude team travelled to Washington to the headquarters of the Special Olympics. Inspirational. http://tvnz.co.nz/attitude/s2010-e2-video-3420868

I'd love to know what you think.

Good Sorts

2010-03-20T13:53:00.002+13:00

This was on after the news on March 7th. A great story :)
http://tvnz.co.nz/national-news/good-sorts-cameron-jarvis-barry-judd-3396607/video?vid=3396609

Missing cable

2010-03-20T07:58:00.000+13:00

I haven't posted for ages, mostly because I can't find the stupid cable to attach the camera and download my latest photos. Very annoying. I've looked everywhere several times and have now given up. I must get motivated and have another go- the dog can't have eaten it, can she?

Speaking of the dog, she is again in the dog box for stealing a piece of steak off the bench last night as I was about to cook tea. I had it sitting there on the bench with the pan ready to go when Neil came home and I got distracted. When I came back there were only 2 pieces instead of 3 and a trail of marinade which led to Ella. It is lucky for her that the kids love her, as each time she does things like that I am increasingly tempted...!

We are very busy at the moment with Emily starting kindy 5 mornings a week now that she is getting to be a big girl. A bit worrying for mum, but not for her. They had a visit from a fire engine this week, which we have heard all about. We have also moved Ben to Neil's school for a variety of reasons, all of which were small but which added together to form the big picture. Already he is much happier and is learning far more, which is great. I ummed and ahhed about what the right thing to do was, and now that we have finally done it I wish we had done it sooner. Just goes to show that you know what the right thing is for your child, and that I needed to trust my instincts. It's not good when you have concerns and are made to feel like there's something wrong with you for having them!

I have also started going to Playcentre with the kids, and Luke and I will be going 2-3 times a week when Em is at kindy. He just loves it there and I have noticed him learning from the other kids. Luke is a keen observer and picks things up from watching me and other kids really quickly. He is very independent and was busy doing his spiderman crawl up the ramp, through the tunnel and climbing to the slide, where he went down all by himself. He had done this several times when a little girl around the same age came along. She went ahead of him, walking up the ramp. He turned to me and got me to help him walk up the ramp too. Then he sat down and pushed my feet to get me to go back down so he could do the rest by himself. He crawled through the tunnel which encouraged the girl to do the same- usually she has to have her mum at the other end encouraging her, and climbed to the slide and slid down independently. The little girl was too scared to go down by herself and I had to hold her hand on the way down. It just goes to show that although Luke has that pesky extra chromosome he still has strengths that other kids don't have, and that he can learn from others and they can also learn from him.

We have also received news that we need to move to the next clinic at the Champion Centre which came earlier than I was expecting. I thought it would happen closer to the middle of the year. This means a new challenge for Luke and a greater emphasis on communication, but I am not worried about his communication at all at this stage. My greatest concern is the walking as I feel he stronger cognitively that physically at the moment and other kids (and adults) still see him as a baby because he is not walking. I would like him to be walking more before we move on. Also the new group is only fortnightly until the transition to school stage, and because Luke didn't start until he was 1 when we moved I would like him to get another half a term to a term in the current group- after all we did miss out on lots before we moved and we have sacrificed a lot to get him here. However it seems that is not to be, and I am sure he will be fine.

As for the walking, it is coming on slowly. He has made the mental change from walking when I ask him, with lots of fanfare, to taking steps from one thing to another and standing up and starting to walk in the middle of the room just because he can. It's all very exciting, and he'll get there soon. Good thing he's just a wee dot, so it's no trouble to carry him!

Otherwise things are fine and dandy. Not so long ago I didn't think I would ever come to terms with Luke having Ds. It just seemed so unfair. And I really could not believe those mothers who said that they wouldn't take away the Ds even if they could, because then their child would be someone else. I thought they were either completely mad, in denial, or lying! Now suddenly I see where they're coming from and although I can't say I am there completely, I totally get it. Would I take away the Ds if I could- absolutely. But not for me, just to make Luke's life easier. Because he's not the problem, it's how others react to him. And there are things I would change about the others too if I could- not that I'm going to commit in writing to what those things are! We had an IP for Luke this week, and I had no concerns. For the first time in his life, I feel like things are where they should be. Phew! We've got there!

Sunshine Award

2010-03-03T12:11:00.000+13:00

This week I was given my first blog award by Nan P. This was one of the first blogs I ever followed, and I love her take on things, and especially her gorgeous grandson Cathal.

So I thought I would pass the award on to one of my other favourites, Kimberly at Driving with No Hands. Kimberly has three lovely children, who are similar ages to mine, and I love the antics they get up to!

I have lots I need to blog about this week, and will get around to it soon. Today I have had to ban Luke from coming to the supermarket with me. After weeks of throwing things out of the trolley, he capped it off today by emptying an entire carton of eggs onto the floor. I had to go and confess to the lady at the desk, and put up with her ~~pity~~ sympathy. At least I didn't have to pay for them though!

What a Difference a Year Makes

2010-02-20T08:54:00.000+13:00

Here is Ben on his first ever day of school last year, when he was 5.

Isn't he cute?

Here he is on the first day of school this year.

Still cute, but a year older, and a lot cheekier!

It's Not Me, It's You.

2010-02-15T16:48:00.003+13:00

I took Luke and Emily to see the dental nurse today. Em was due for a check-up and Luke hadn't been before as he didn't have any teeth! So off we went this morning. I had let the nurses know that Luke has Ds when I made the appointment, and said I had some concerns that he was missing some teeth. I said I wanted someone with experience with children with Ds, and if not, a referral to someone who was in the know. The lady assured me that the nurse was very experienced, and would refer me on if there were any problems.

So in we went this morning. Emily got the all clear, and was rapt with 2 stickers, a new toothbrush, and a necklace made in the shape of a butterfly which the nurses had made using dental supplies. I loved them too when I was a kid.

Luke was up next. He stayed in the buggy and the nurse had a quick look in his mouth. She agreed that the teeth alongside the middle two in the bottom row were probably missing, and said she believed this was common for 'Down syndrome kids'. She went on to say a few more things about 'Down syndrome kids' before I told her (as nicely as I could manage) that Luke was not a 'Down syndrome' but was a boy. He happened to have Ds but he is mainly just a little boy. The nurse blinked then kept talking. She said that the missing teeth were probably not a big deal, and then when I said something about braces, she said Luke probably could not have braces because it would be too difficult.

I just looked at her. The woman was not saying it would be difficult for any medical reason, but difficult because Luke would be difficult. The little boy who to date has been the easiest of my three children. Who had a blood test this morning, and only let out a little growl of frustration because they were holding onto his arm.

So the mama bear came out. "If Luke needs braces, he will have braces, just like my other children." They looked at me with pity. What is with these ladies? They are probably congratulating themselves for handling me so well. And I just want to slap them.

So I'm sorry to break this to you ladies, but it's not me, it's you. And all those like you, who only see that extra chromosome and miss all the beauty it holds. And man am I sick of people like you.

Climbing

2010-02-13T07:57:00.003+13:00

During the week, there was shouting coming from the garden. Emily, whose voice could cut through steel, was calling for me at the top of her lungs. I am surprised every "Mum" in the neighbourhood did not come running! When I got outside, there was Luke, at the top of the stepladder, and Emily holding on to his ankle to stop him from falling. I couldn't believe it. Turns out Neil had been using it when he was working on the playhouse, and Luke can climb. Unfortunately he did not tell us he could now climb, or that he planned to go up the ladder, but luckily his sister was on hand to prevent a disaster. I was impressed that she had the presence of mind to hold him and call out. She is only 3 after all.

So the ladder is now always put away. The ladder to the trampoline has gone too, because he climbed up that when I was hanging out the washing. I spoil all his fun!

Last night Luke took his milk and plonked himself down in Ben's lap for a cuddle. So cute! So then Emily wanted a turn. Lucky Luke was happy to oblige :)

More holiday pics

2010-02-05T09:09:00.002+13:00

Luke with Rebecca and Gayle. You can tell what he thinks of this!
Luke was very impressed with his big brother on a real motorbike.

Checking out the working dogs with Anna, but really checking out Ben on the bike.

Ben was lucky enough to have a go on Sam's motorbike. I think it's safe to say he loved it!

Who Loves Pepper?

2010-02-01T08:19:00.002+13:00

We have been away on holiday for the past 8 days, and school is starting back tomorrow, and Emily is off to kindy this afternoon. But first, here are some of my favourite holiday snaps of Luke and his new best friend.

Our dog would never sit still enough for this...

or this...

or this!

We love you Pepper!

Strange Children

2010-01-31T21:27:00.002+13:00

What are they doing?
Why, they are attempting to catch birds by pretending to be trees of course!

This is a sequel to the photos I posted of Luke's birthday. He can now climb onto the table, getting his pants wet and dirty too!

He is the dirtiest boy I know (but luckily also the cutest!)

The birthday continued

2010-01-20T20:09:00.002+13:00

The mummy demonstrates how to blow out candles- a bit too effectively, as we had to re-light them!
Luke's first attempt at blowing out the candles.

Blowing out the icing nearly setting his own hair on fire!

New Duplo from Ben and Emily

More practise at candle blowing. Not so keen on party food- he's a healthy eater, my boy- unless you count chocolate and chips ;)

Happy 2nd Birthday Luke!

2010-01-19T11:53:00.002+13:00

More interested in the paper than what's inside!
The demo from the big brother.

Having a real go outside with the big sister. A fairy dress is suitable attire for all occasions, apparently.

The end result. This treatment leads to smooth, shiny hair I am told.

Happy birthday Lukey!

Two years ago tonight...

2010-01-18T22:03:00.005+13:00

...this is what I looked like {not the best ever photo of me, but I was a little preoccupied ;) }
and this is what Luke looked like.

Can you tell I was pregnant?

First Steps

2010-01-09T21:09:00.003+13:00

Our beginning.

2010-01-08T13:14:00.006+13:00

Luke was born nearly two years ago. He was born at 3.31am and weighed 7lb 8oz. We were delighted. I have never blogged about his birth before, but here goes.

Luke was our third baby. We found out he was coming just after Neil got a job which would require us to move to a very rural community just over an hour and a half from where we lived. We would be renting out our home and living in a tiny school house on the school grounds. Neil was elated when he got the job. I cried. I felt bad that I couldn't be happier for him. But I was terrified. In the end it turned out to be one of the best things we ever did, and was a special time in our lives.

I had a scan when I was 8 weeks pregnant, which confirmed a heartbeat etc. I lined up a new midwife near where we were moving to. The date for the 12 week scan, where they routinely screen for Down syndrome, was the week after we moved. I met with the midwife, who offered us this scan. I turned it down, as we already had a heartbeat, and had discussed the issue and decided that no matter what, we would be having this baby. We have both worked with children with special needs, and decided that if someone had to do it, we could. Little did we know that soon we would be walking the talk! Neil can't remember us having this conversation, but I can recall it vividly. Lucky for him he comes out well in it!

My pregnancy was without complications. We had a scan at 20 weeks, and at the last minute found out the gender of the baby, which I have written about before. http://lifewithlukeskywalker.blogspot.com/2008/11/18-months-or-so-ago-my-then-3-and-half.html Luke was very active in the womb, but so had the others. I remember being tired and uncomfortable one night, and sitting on the side of our bed, saying to Neil "This baby is alright, isn't he?". He just seemed to never sit still. Neil reassured me that everything was fine, he was just a mover and shaker like our other babies, and forgot about it.

The scan showed that the placenta was lying too low, and so at around 36 weeks I had another scan to check this. We were really excited as it was in 3D and we got to see his face. He looked gorgeous. Our only worry was that they were predicting him to be enormous- close to 10lbs- and I am not built for such things!

Luke was due on the 26th of January 2008, but because we were living 45 minutes from hospital on a hilly and windy road without mobile phone coverage, and my labour with Emily was only 3 hours, I persuaded the midwife to induce me. My worst nightmare was delivering Luke in the dark on the side of the road somewhere. So on the morning of the 18th of Jan, we went to hospital. The delivery suite was full to capacity! Every woman in Hastings had had her baby overnight, so it wasn't looking good. Our midwife Judy got to work helping the staff move the mums through to the next ward, in the hope of a bed coming available. It was a Friday, and if we couldn't get a bed, we would have to go home and wait until the Monday. We were quite happy. Mum was at our house with the big kids, so Neil got us coffee, lunch and some magazines, and we sat in a side room having a lovely time. It was almost like a date! Around lunchtime I started having some contractions, and not long after there was a free bed, and I was admitted.

Judy had a look at how things were going, and I had the monitor etc. It seemed that I was pretty much already in labour, and it wouldn't take much to get things moving. I had one lot of prostin gel, and then the waiting began. Every time I sat down, the contractions would stop, and when I got up, things got started again. By the time I was allowed to have more gel, it was too late in the afternoon, and the hospital rules meant we would have to stay overnight and start again in the morning. Judy recommended I keep moving if I wanted things to progress, so I did several loops up and down the stairs. I must have been a funny sight!

Around 9 Judy said she was going to head for home. She asked me what I thought would happen, and I felt quite certain that I would not make it through the night without having the baby. She was keen to get some sleep, and so was I!

I was woken by contractions about 12.30 and laboured by myself with Neil asleep on the mattress for about half an hour, and then jumped into the shower. I informed the nurses on duty that I was definitely in labour as he slept, but they just shrugged and looked at me. I don't think they believed me, the old bags! Around 1.30am things were getting serious, so I woke Neil up and he ran the bath for me. Another hour or so in there, and so I got out. It was time to call Judy, and I wanted that gas!

By the time Judy arrived, it was time for me to push. I HATE pushing. So after about 6 contractions, I didn't believe Judy and Neil, who were telling me that the baby's head was about to be born. I thought they were exaggerating to get me to keep going, but sure enough, with the next push, his head arrived, and then it was all over. I couldn't believe it.

He was enormous. His apgar at one minute was 9, and then 10. He was looking around calmly, and he had dark hair! Hair! Our other babies had a tiny amount of dark hair when they were born, but it fell out and they were bald for the next two years. Luke had much more hair, which was a surprise for us. He had rolls everywhere. Rolls up his arms, rolls around his neck. He was covered! When Judy weighed him, he just lay there patiently, looking around. I had been worried that he would be a screamer, as the other two had been such good babies, and I was relieved. The scales said he was only 5lb something, which all of us thought could not be right, as he looked so huge. Judy got another set, and still Luke didn't cry. I couldn't believe my luck. The next set said 7lb 8oz, which was better, but still seemed a bit light. After all he looked so big. I got him back and tried to feed him. He was keen but tired quickly and I thought to myself that it was funny how quickly you forget what it is like to breastfeed a newborn. I kept persisting, and he had the odd suck, but nothing much.

After a couple of hours, Neil went home to tell the kids and have a bit of a sleep. Then he was going to bring them and mum for a visit to meet Luke. He was on fop of the world. I tried to have a rest. I kept trying to feed him, but was having trouble getting him to latch. I would have to be patient I told myself. I had a visit from my friend Anna, who had a cuddle. She is my only friend to have met Luke 'before' the diagnosis. This is special to me.

I sent a whole lot of texts telling people about Luke, cuddled him lots, and waited for Neil and the kids to arrive. They were both so excited and couldn't wait, and were fighting over whose turn it was to hold him. We were so happy and proud of our beautiful family.

Mum took the kids home after a while and Neil stayed with me until after tea, when he headed home for some sleep and to see the kids and put them to bed. Throughout the night I looked at my beautiful baby, and tried to feed him. I looked at him, and thought something wasn't 'right'. His legs were short compared to his body. He looked so solid, but didn't weight what he looked like he should. I wondered whether he was a 'little person'. I remembered how I had studied Ben so closely on the night after he was born, and worried myself sick that there was something 'wrong' with him. So I decided it was just hormones and I was being silly. Later I noticed a certain look around his eyes, so I decided to check his hands for the single palmar crease. I knew this could be a sign of Down syndrome. One hand had two creases and the other had one. What did this mean? I decided that if you had two on one hand, then you definitely could not have Down syndrome. "Stop worrying woman" I thought to myself. Sometime in the night I called the duty midwife to come and help me with the feeding. She helped to latch Luke and got the pump so I could express, and got a wee cup for him to 'lap' some of my milk out of, so that he was getting more. She asked if she could tell Judy, my midwife, what we had been trying when Judy came in in the morning, and said she was going to suggest I use a shield to help Luke latch. I have never had any trouble feeding before, and this lady was great. I will never forget her as long as I live.

When Judy arrived in the morning, she asked me to tell her how things had been going, and so I ran through the list. I was desperate for her to reassure me that everything was okay. It was like a bad dream, because she didn't. She just looked at me and listened. There was a short silence, and then I said the thing I didn't want to say, as if not saying it would mean it wasn't true. "It's almost like he has Down syndrome or something." And she looked at me, and said "Yes, it is."

I couldn't believe what I was hearing. She was supposed to be telling me not to be silly, Luke was fine, and here she was agreeing with me. This wasn't how it was supposed to go! She went on to say that this may not be the case, that some kids just look a bit different but are actually fine, and that I would have had them through school. Now I knew things were not right. My kids are not funny looking, they are beautiful, and there was no way this was true!

She decided to go and get the paediatrician to clear things up straight away. He came, looking like he was all of 15 years old! He asked me what my concerns were, and I told him, feeling quite disloyal to Luke as I did. He asked if he could hold Luke and have a look at him, and so of course I agreed. He did his thing, and handed Luke back to me. He looked me right in the eye, and said that he often sees babies about things like this, and most of the time, he can tell the mothers straight away that all is fine. And sometimes, he doesn't know, and they have to wait for test results. And that sometimes, he knows for certain straight away. And I'm praying, praying that I'm in that first group. I want to be one of those mothers. I really do, like I have never wanted anything in my life before.

And he looks at me and says, and I am sorry to tell you, but this is one of the times when I know for sure. Luke has Down syndrome. I cannot think about this without crying still, two years later. I was all alone, apart from this doctor and the midwife. She had rung Neil and asked him to come in without the kids, as I was a bit emotional today. To his man brain that meant delay the kids for about an hour or so, then get mum to bring them in, and we'll bring Mel and Luke home together.

The doctor then left me with some information and a promise to come back and talk to Neil when he arrived. I sat crying and holding Luke and waiting for him to arrive. Judy was great. We talked about how to break the news to him. As if the way we told him would make a difference. Judy offered to tell him for me if that was better, but I thought I should do it. That was the worst moment of my life- breaking my husband's heart. I had never seen him cry before. Only a few random tears when we were married, and when the others were born. Not really cry like this. He didn't believe me at first. Then he punched the wall. Then he held Luke, and the rest is a bit of a blur. We have never been so sad. Judy headed mum off and entertained the kids while we told her. She had seen a look in Luke's eyes the day before, but had shrugged it off as nothing, so it didn't come as a complete surprise.

The testing began the next day. I stayed an extra night in hospital for heart and blood tests. We had to come back several times over the next few days, as he was a little jaundiced and they wanted to monitor him. His hearing was fine, but his heart was not. He was diagnosed with an 8mm ASD which we were told would require surgery in the future. We have since had another scan and it is almost gone, so he will no longer need an operation in the future, thank goodness.

I am glad that I did not know that Luke had DS while I was pregnant. I would have just been stressed and worried, and as we had just moved, it would have made things much harder. But I will always be sad that what should have been a joyful time for our family had the shine taken off it, and that I did not get to enjoy what is probably my last baby in the way that I would have liked to, because of our grief.

Two years on and Luke is the most fun kid ever! He is a character, has a wicked sense of humour and loves an audience. He is adored by his family. He loves music (I hate when those cliches are true!) and animals, and has just started singing. He has lots of words and signs, and is able to communicate exactly what he wants. He can crawl and bum shuffle and cruise round the furniture and climb and get into mischief. He can have a tantrum. He can throw his food all over the kitchen. He loves and is loved. He is happy, and so am I.

He is one of the best things that has ever happened to our family.

Hooray for Summer!

2010-01-06T20:05:00.003+13:00

Today we went to Caroline Bay, where there was a Big Dig at the beach, and also a fair.

Luke was in for a swim. He's decided he loves the water, and even though it was not that warm he stayed in for ages and had a wee tant when I got him out! This is the boy who wouldn't sit down in the bath until two weeks ago :)
To say he loved it would be an understatement.
A kiss from Luke...

...to you.

Ben is now old enough to want to ride by himself. I thought I might be able to be seen with him in public until he was at least 10, but apparently not ;)

We came home all sandy and windswept, and tired. It was a great day.

For Phillipa

2010-01-05T06:58:00.004+13:00

We had some visitors yesterday :)
There was a little competition!

Here are the littlest ones getting to work.

Way to go Aidan!

Playing nicely together.

Thanks for the visit guys. It was lovely to see you and the kids were great.

PS- Phillipa is our physio, and we are on holiday until the beginning of February. Also Luke's record number of steps is now up to 7 :)

Houston, we have liftoff!

2010-01-03T15:03:00.002+13:00

Well, last night he did it. Just this week I was saying to a friend that I have always assumed that Luke would walk before his 2nd birthday, but now that is only a couple of weeks away and it hasn't seemed to be getting any closer to happening.

Luke has pretty good tone generally, but his core strength (more the lack of!) has always been his weakness. So he can spider crawl as fast as Spiderman himself, and his mum has to run to catch him at times. He can do a 'traditional' crawl too, usually to show off, if he feels like it. He can also bum shuffle, so he can carry stuff. Luke can also climb onto the couch, bounce himself on the tramp, play in the toilet, fish things out of the dishwasher, open and close the microwave, get himself outside into the garden and head for the sand pit. He doesn't see what the big deal is about walking.

Well last night, as Neil was putting Ben to bed, I had Luke propped up against the couch. Standing up. And I was trying to encourage him to take that step. The first one. Again.

So, he did. Not just one, but two. And lots more times. Neil could hear me go supersonic through the wall. I haven't felt so very proud in a while. He got up to 4 steps. He's a star.

This morning he tried out his new trick for Ben. I don't think there is a prouder big brother in New Zealand today.

He would not, however, walk to Emily. Call that karma for all the times she drags him around like he is her personal assistant, and won't put him down, even if he grizzles. She is not too happy about that!

Now I need to think about when to move him to a proper bed from the cot. Any suggestions?

Check out Clayton!

2009-12-28T14:33:00.002+13:00

Check out Clayton- 19 years old and has his drivers licence :) Very exciting.
http://www.stuff.co.nz/national/3196667/Down-syndrome-driver

Christmas

2009-12-28T07:15:00.003+13:00

Lucky Luke with his new trampoline from Nana
What? A wot wot?

Emily with her new bike and a large, noisy accessory.

The princess

Christmas Day was absolutely sweltering! 32 degrees here and not a breath of wind. Luke, the baby who won't sit down in the bath, was not only sitting in the paddling pool, but he was standing at the edge, and diving in face first over the side! I think I might need to take the shampoo outside...

Hope you all had a Merry Christmas :)

Look who's busted now!

2009-12-24T10:38:00.003+13:00

He's Busted!

2009-12-23T09:54:00.002+13:00

Last week school finished for the year, so all of Ben's exercise books came home. I was looking through his story writing book, and started laughing. He had written this story BEFORE his birthday.

It's spy time at my house because we need to find ort (out) wate is in the farmes bag. This is wate I know. A gun. (Emily had got him a nerf gun.) My sister told me. Finding ort (out) wate is in yore present is pritye nortye (pretty naughty) and the secret present is in the boat with a blanket on it.

So no, his sister cannot keep a secret, and yes his present from us was in the boat with a blanket on it. Little monkey! Safe to say, the Christmas presents are not in the boat, and are already wrapped so even if the 'spy' does find them, he will not know what they are!!

His teacher must have been laughing to herself, and she never let on!

The photo shows what was under the blanket- Lego! Yay!

My Big Boy is 6!

2009-12-21T13:41:00.007+13:00

Here he is on the day- the 18th.
A few weeks old.

15 months

His 2nd birthday

Ben's 3rd birthday

Nearly 4.

Where did the time go?

Happy Birthday Ben!

So over it...

2009-12-16T16:19:00.003+13:00

I am struggling with the weight of other people's judgements and comments when I take Luke out in public. Often people are great, and there is not an issue. I get lots of compliments and smiles, and Luke is so smiley and friendly that people interact with him a lot.

But I also get the not-so-nice comments. Like the other day at the optometrist, when a man and his wife came in to the waiting room. Luke LOVES men, so went straight over and put his arms up to be picked up. The man scooped him up and bounced him on his knee. Then he got on the floor when Luke brought him a toy car, and played with him for ages. It was lovely...until another lady in the waiting room commented on how friendly Luke was to the man who was playing with him. At this point, the guy's wife piped up and said "Yes, most of them are like that."

All I could do was blink back the tears. Luke is not a 'them' who is friendly because he has Downs. My other kids are social too. He is a person, not a syndrome.

I get people saying something offensive or insensitive every week. This has only started since he is bigger and the facial features of DS that he has are more noticeable. How do I cope with this without taking it to heart or saying something that makes me sound like a b***h?

It's getting to me.

On the good side, Luke has passed his eye test, and won't need testing for a couple of years. Yay! One less appointment to be getting to :)

Brothers

2009-12-02T21:24:00.002+13:00

This is actually the last photo I took. Ben was minding his own business, having helped himself to a can of creamed rice from the pantry after school. Note the gorgeous bowl he is eating from.
Also note the little brother, who is obviously fond of creamed rice, recognises the tin, and as his mother is starving him, moves in for the kill!
Luke finds the strangle hold useful for subduing the big brother in the pursuit of food!
A brief respite as he eats a mouthful that the big brother has been kind enough to share :)

It obviously takes a bit to get Ben's attention!

Wordless Wednesday

2009-11-25T20:01:00.002+13:00

Guy Fawkes

2009-11-16T09:28:00.001+13:00

The Evidence

2009-11-13T16:13:00.003+13:00

Here he is! Yay!
And there he goes!

Yesterday he took his first step- from standing against the wall to his dad. Usually he just leans, but yesterday he took a step! Couldn't be more excited or proud :)

Luke can stand up! It's official!

2009-11-09T16:25:00.002+13:00

After surprising his daddy on Friday by standing in the middle of the lounge floor, away from any possible supports, when Neil turned around, Luke crawled outside on Saturday, and stood up on the concrete patio as I was walking towards him. It took every ounce of self-control I have to continue walking calmly towards him, fighting the urge to either run screaming to catch him in case he fell and hit his head or scream and clap loudly because he is so clever!

So we now know how he does it- he goes from the spiderman crawl position, and using those abs, just stands up, bending from the waist. Very clever. I am so excited that I have been modelling this move maniacally and repeating "Stand up, no hands!" and raising my arms in the air to prove it. I must look like a loon ;) (As if I am not...)

I will try to catch him in action soon, but you know how it is with kids and cameras.

Oh, and Ben has another strep throat which requires a third round of antibiotics-sigh- but hopefully he'll be better soon.

The Beginning of the Barbecue Season

2009-11-06T09:38:00.003+13:00

Last night we had our first barbecue tea. I defrosted the sausages and had the chops in the microwave and decided to bath the kids before we ate, as Neil was going to cook the meat when he got home. Ben and Emily were all excited to be having sausages (!) for tea.

When the time came for the meat to be cooked, I overheard Ben excitedly telling Neil that we were having sausages. To which Neil replied, "No, we're just having these chops. There aren't any chops". Cue Ben's exclamations of frustration and disgust: "But I hate chops and MUM said we were having sausages". "Well there are no sausages here Ben". At which point I piped up that we were having chops AND sausages, which were on the bench, ready to go. "No they're not" said my ever-loving husband. I cast a disbelieving eye over the bench, ready to blame him for a poor effort in looking, but no sausages.

Then the penny dropped. That b****y dog! We all race outside, to discover fragments of plastic wrap and polystyrene all over the lawn, but not a scrap of sausage anywhere. I hate that animal!!!

Luckily I had more in the freezer, so all's well that ends well.

On a similar note, I have had Emily scrubbing coloured pencil off my window sill this morning and Luke throwing nutella sandwiches across the kitchen, and it's only 9.30am!

Oh, and earlier this am, Neil turned around and there was Luke, standing in the middle of the floor, standing up all on his own! We have no idea how he got to that position, but he can obviously do it, sneaky little monkey!

The Future

2009-11-02T11:11:00.003+13:00

I often worry about the future and what it may hold for Luke. I don't want him to be lonely. I want him to have friends and be happy. Just like the rest of my kids. But for some reason, I worry about it for him. With the others, I just assume they'll be ok, be independent and productive and happy and all the rest of it. I know that is not particularly logical, and that they could be miserable and lonely too, but that doesn't stop me!

I also know there are lots of people with DS who live independently and are very happy. But who am I to let reality get in the way of my worrying? I want Luke to live in his own place, but I have never lived alone, and have no desire to. So I worry about sending Luke to live alone.

Anyway, I have a solution. Or rather, Vanessa and I have a solution. Vanessa is the mother of Luke's friend Aidan, who I am about to introduce you to. We all met in therapy at the Champion Centre- and Vanessa and I get on like a house on fire. Meeting parents whose child has the same syndrome as yours is a strange thing. You have something in common, but it may be the only thing you have in common. However I have found a real friend in Vanessa, and I expect many other mums I have met and will meet there.

This is Aidan. He is about 3 months younger than Luke. He is also the youngest in his family. Like Luke, he is a mover and a shaker! We love Aidan.

Here are the boys just hanging out together.

Probably getting into trouble together (and we suspect there will be plenty of that into the future!)

This is one of Aidan's favourite pastimes. Sorry Vanessa, but I had to put it in! :)

So the plan is that the boys will be friends throughout their lives. And no we have not consulted them, and no we are not planning to! They may like to go flatting together, and get up to boy stuff together. Like trouble. And I am happy with that, it gives me some respite from my worry. Luke has a friend who will 'get' him, who will not judge him, who is on the same level as him. This is the beginning of a beautiful thing.

Which is not to say that there is no competition between them, or actually between their mothers, as to who will walk first. Because there is. And that's normal too!

Look what Daddy made me.

2009-10-27T20:25:00.003+13:00

Neil made these parallel bars for Luke over the weekend. There is a set at the Champion Centre which Luke is beginning to use, and so instead of being frustrated, we got busy. I say 'we' but read 'Neil got busy' unless bossing him around counts! Thanks to Gillian for her tips too.

I think this boy is pretty cute, and he's finally feeling better. Yay for spring :)

Sick kids again

2009-10-25T09:36:00.003+13:00

What a nightmare. Since my last post, we have continued the theme of sick kids in my house. Ben got a fever again and was home from school on Tuesday. Took him to the doctor on Wed and he had his strep throat back. So 10 more days of a different antibiotic for him. The doctor also swabbed Luke's throat, and we got the results on Thursday afternoon. His strep was back too. So 10 more days of antibiotics for him too. My sore throat was back too, so off to the doctor for me, as the long weekend was coming, and I didn't want to be paying another small fortune if I got sicker then.

Then we had the paediatrician for Luke- a regular check- on Friday afternoon. He passed with flying colours, and all his blood tests came back clear, which is great news. We are still waiting for an exact measurement on the size of the ASD- just to see whether it is now so insignificant that we can leave it forever, or whether he needs a further scan when he is 4 to keep an eye on it. Either way, I'm happy. Other than snot and a weird viral rash, he was fine.

Cue Friday night, when after his antibiotics he started vomiting. Great. Poor little boy had a very gurgley tummy, but once it was empty he slept through the night. Yay! Shame his brother and sister did not oblige. So off to the emergency doctor on Saturday for a change of antibiotics. I wrote Neil a list of what had been going on and sent him. I think I have had my fill of doctors lately. The guy he saw has a 17 year old daughter with DS, another of those weird coincidences :)

Luke was all better yesterday, and with diminishing snot levels. Someone has to keep Kleenex and the local doctors in business ;)

Here's hoping for a week free of doctors!

Getting Agile

2009-10-17T08:12:00.002+13:00

Luke is now able to get pretty much anywhere and do pretty much whatever he likes. Like climbing onto his brother's head when naked!
Or climbing up onto the couch for a cuddle [the big boy's tongue out is for the camera, not the brother :) ]

Arriving on the scene

He can also balance, like on the end of his couch. Such a show off!

Now he just needs to walk. I am getting impatient, and I know it will happen, but I am not good at waiting. He has been creeping and crawling for a year, and still no walking. Trying not to feel discouraged, but...

Sick Kids

2009-10-12T12:41:00.003+13:00

Luke testing the dirt- I don't know what is up with him but he's always doing it!
Helping Dad in the garden.

We have just started school again, after the holidays. Emily was sick in the week before the holidays started, with the flu. Then Luke got it, and ended up being admitted to the hospital to be assessed for pneumonia. Luckily he did not have that, but came home with some antibiotics as a preventative measure. Then Ben got a fever and cold and a sore throat. That turned into strep throat during the week, so had to take him to the dr while we were away and get antibiotics for him. Next Luke got a fever again. Took him to the same dr, who was not convinced but took a swab just to be sure. Guess what?? Luke has a strep throat too, so more antibiotics for him. Then I got it- such a sore throat and a fever. And of course on a Sunday, so off to the after-hours clinic for me, and more antibiotics for my strep throat. So Ben's are 4 times a day, Luke's 3 and mine twice a day. All I am doing is giving medicine, working out who is due to have medicine, and who has had it already! And we have been exposed to the chicken pox, so that will probably be next. I don't think we had a single day with everyone in the family well.

The New Highchair

2009-10-05T08:34:00.002+13:00

I have been unhappy with the highchair we had for a while now. It was fine with Ben, because he was quite tall, so he could see and reach the tray reasonably well. This is not the case for Emily and Luke, who I had to prop up with cushions or towels when they were smaller and always had trouble seeing and reaching over the lip to get anything. I have been eyeing up an expensive European wooden chair, which can be used as a highchair, and also as a chair for many years to come, as it fits at the table, and has an adjustable seat and footplate, as well as a removable tray.

Well, I recently found a NZ made version, and it is about 1/4 of the price, so of course I got one! The tray is at a great height, and it fits at the table, so Luke can join us in family meals. It is easy to clean as well, which is a huge improvement, and it looks great. I love it!

It also caters for a range of eating styles...

and he can see what is in his bowl...

and he just loves it!

This method is much more efficient than bothering loading up a spoon!

Or you could try two spoons at once!

Love it, love it, love it!

Fugitive Friday

2009-10-02T16:31:00.002+13:00

I'm out of here Mum
Caught!

No, he can't even get close to getting out, but he sure is trying ;)

Hospital

2009-09-30T20:18:00.002+13:00

Luke has been unwell for a few days now, after Emily and Ben were sick with the flu. Of course he has been the worst, and yesterday Neil made a doctor's appointment for him. With half an hour to go until the appointment, I decided to take him in early. His temperature was 40.1 deg Celsius, and he had had panadol and neurofen and it had gone up further.

When I got to the doctors he got even worse and was crying so they put me in the nurse's office to have a quick check-up with her and be n the airconditioning as it was getting hot. They then informed me that there had been two emergencies and so there were 6 people ahead of me! I was not best pleased, even thought I know it was no-one's fault. They juggled things and I only had to wait for 2 others in the end. The doctor is very thorough and decided to send him to the hospital for assessment as he had some crackles on his lungs.

So off we went at 5pm last night. We saw two doctors there, and had his oxygen sats checked and a urine sample etc, and were given some preventative antibiotics so thankfully we were home by 8.15 pm. He is much better today, so here's hoping we get a full night's sleep and he's even better tomorrow. Fingers crossed.

Check out Kelly- what an inspiration!

2009-09-21T12:58:00.000+12:00

http://www.youtube.com/watch?v=tAoI0w1Pe_Q

Police Dog Puppy

2009-09-21T12:17:00.004+12:00

Ben's school had their school fair on Sunday. There was a Police Dog demonstration there, so here are our boys waiting and watching- there is a teenaged dog in the distance.

Look how cute they are sitting together!

Luke got a special cuddle with the Police puppy.

Not sure who is mauling who in this one!

Puppy love ;)

Friends

2009-09-18T20:33:00.003+12:00

Luke's friend Zoe saying hello :)

Kindy Father and Child Cake Auction

2009-09-16T13:03:00.004+12:00

Emily's kindy held a cake auction last night. Neil and Em had made the cake on Monday night, and iced and decorated it early yesterday morning. She is so proud of it, but was having a little difficulty with the idea that it was going to be sold. Of course we were planning to buy it back- luckily there was a cap on the price- so all was well in the end. She liked her cake best of course. I think they did a great job.

Trouble!

2009-09-09T21:54:00.003+12:00

Luke has suddenly become a big boy with big boy tricks ;)
When I took off his nappy tonight, it was full of sand! I don't know what he does in that sandpit, but an awful lot comes inside. So I decided to give him a quick dip in the sink, as it was so warm in the living room with the fire going and he doesn't sit down in the bath any more.

The camera smile :)

Who's been into the cereal then?

Good thing his big sister and Ella are good at cleaning up.

The worst part is that he was singing 'rub a dub dub' which is the song I sing when I wash his hair... Some serious decontamination required after this! Should be a good photo for his 21st birthday.

Therapy Part Two

2009-09-06T11:57:00.004+12:00

After working on his communication skills with the cards and matching the pictures to the cards etc, Luke took himself off to M, the Early Intervention Teacher. He plonked himself into the seat, and was ready to go. I was still asking L some questions at the previous 'station' and Luke had already started by the time I caught up!

Here he is practising his drawing. He is also learning to draw dots and lines 'up' and 'down' the page.

Luke is also learning to open lids- fine motor as well as cognitive development. Look out mum! I love the look of concentration on his face here.

Luke is working on the concept of things which are the 'same'. He does this by matching the card with the picture when we do our sign work, and again here where he finds the things which are the same.

He is also working on sorting objects by size. He can already stack objects, and is now learning to slot the cups one inside another. This is currently one of his favourite tasks.

Luke is learning to sort shapes here and is getting better each time. He also does simple puzzles and other activities. He loves working with M and this is one of his favourite times during therapy. He just loves the challenge and always tries really hard to have a go. He is a quick learner and I am always so proud of him when we have finished our day.

Next moved to the Speech Language Therapist. We discuss any feeding issues, but we don't have any. Luke eats 1-2 meals off a spoon, has finger food for snacks and feeds himself dinner, so no worries there. I tell her about Luke's new words for the week, which this week included "Chris", 'grass' and "Ella! On your bed!" Ella is our dog, and that is what I probably say the most! She also gives me ideas for how to continue this good work and anything else which arises.

Then we work with P the physio. I need to check with another mum before I post a photo as her child is in it too. At the moment Luke is working to strengthen his core, as preparation for walking. He walks behind a trolley and cruises around furniture. He has recently learned to ride a ride on, and this will help with the core strength too. We also have lots of 'horsey rides' with Dad as the horse, play with the swiss ball, bounce on the tramp and have him walk as we hold his hands.

Luke is doing really well, and he loves his therapy sessions. I am sure it is the highlight of his week, and he is always asleep before we hit the road on our way home.

So thanks ladies for all you good work with our Luke Skywalker, and all the fun you have doing it. I can't tell you how much we all appreciate it.

Therapy

2009-09-04T13:12:00.004+12:00

On one of the blogs I follow, written by a mum with a wee boy with DS who is about 6 months younger than Luke, the mum has been writing about her son's therapy. We have had issues with therapy in our time too, mostly the lack of it, and in some cases the quality (not you T in the Hawkes Bay!). We even moved so that we could access the type of therapy we wanted for Luke, and I feel really strongly about the fact that this type of therapy is not available all over the country.

We travel an hour and a quarter once a week to attend this centre. It is not home-based. I take Emily with me most of the time, but have found someone to help me out now, so that she will not always come and won't miss kindy so much.

Therapy is not just for Luke, it's about me too. I don't want people coming into my home non-stop just because Luke has a disability. I don't have this happen for the others, and I can be trusted to do my best without the powers that be deciding that they need to check us out. Yes, the centre is not Luke's natural environment. Neither is school for Ben or kindy for Emily. That doesn't mean it's not valuable or that they can't learn there. It's good for me to get out of the house and to not worry about the state of tidiness if I have professionals coming here all the time. It's good for Luke to be in a group setting and to be like everyone else. I love being just the same as all the other mums there. That they, like me, see Luke as Luke. Not Luke the boy with Down Syndrome. No stupid questions. Just other parents and their kids and celebrating their achievements and supporting each other and just being 'normal'.

There is measuring of progress, not against what 'typical' children are doing, but against what he has learned and what his next step should be. Making sure his development is progressing evenly across all areas.

The therapy is holistic. The therapists work together to teach Luke as a person, not seeing only his needs in their area of expertise in isolation. They KNOW him. I think they love him too. We focus on PLAY and I come away each week with a few ideas to try with him through play. He loves going and it is FUN.

We start each week with a shared morning tea, followed by a music therapy session. This is great, and allows us to reinforce sign as well as other concepts such as directions, animals, parts of the body in a way the kids enjoy. Luke has trouble sitting still! Then we rotate through the therapists.

Here is Luke working with L, the Communication specialist. We are doing a version of the Downs Ed See and Learn programme. Luke has the flash cards with the photo on one side and the word on the other. They look at the picture, and L signs the word as well as saying it.

Then Luke posts the card into the box. This is his favourite part!

He is excited to have grabbed two cards at once! Now he matches the photo on the card to the same one on the board. He is very good at this. He is also working on 'same' with his Early Intervention Teacher.

More focused on the matching now. He really checks out the photo, and often turns the card over to have a look at the other side where the word is. So cute.

Paying close attention to L as she encourages him to match the cards!

L signing 'washing' as Luke looks at the photo on his flashcard.

He signed 'finished' frantically once he had had enough, and I put him on the floor as I had a couple of questions I wanted to ask. When I turned around, he had crawled over to the Early Intervention teacher, plonked himself in the bumbo seat she uses, and started without me! Talk about motivated. I look forward to going every week.

Photos of what he does there next post. :)

2009-08-22T09:22:00.003+12:00

Spot whose brother is into skateboarding!

2009-08-17T19:53:00.004+12:00

Wipeout!

Best Buddies

2009-08-16T21:03:00.002+12:00

Walking Pushing a Trolley

2009-08-16T19:59:00.002+12:00

I posted about what Luke was able to do at age 18 months a little while ago, and I mentioned that he could push a trolley across the living rooms. So here he is. He started by pushing a ride on as it was lower and he didn't have the strength to stand up for very long. Then when we were away, he used other people's ride ons which were all different heights. When he was getting confident with that, I turned them around and had him push from a more upright position, with his hands on the steering wheel to push instead of the seat. We were only away for a week, and by the time we got back he was strong enough to pull himself up at the trolley and push it along all by himself. Yay!

Sleeping sitting up

2009-08-14T11:47:00.002+12:00

Luke has just started to sit up when I lie him down for his sleeps, and I often go back in now to find him asleep folded in half, as if he has fallen asleep sitting up and slowly leaned over. I know he is extra flexible due to the DS, but is there any other reason he might be doing this, and do I need to be concerned or not? Any suggestions welcomed :)

There were four in the bed, and the little one said...

2009-08-10T20:43:00.001+12:00

A Boy and his Dad

2009-08-09T07:44:00.004+12:00

There are many uses for a dad...

Teeth

2009-08-05T20:45:00.003+12:00

The other night we were getting the kids ready for bed, and Neil was brushing Luke's teeth. He had just got the second of his front top teeth, and had 4 in total. I commented on how pleased I was with the shape of them, as his lower ones are very thin and jagged. I also said that it was funny how he was getting his teeth in the usual order, when I had read that kids with DS often cross-cut their teeth. We were laughing because Emily cross-cut, particularly the top ones, and at one stage she looked really peculiar with the front right tooth, and the next one to the right through, and none on the left.

The next morning I noticed Luke's cheeks were really red and dry, and had been for a few days. I put my finger in his mouth to see if there was any action. Imagine my surprise to find 2 top molars! One is totally through, and the other half way cut.

When will I learn to keep my mouth shut!

Winter at the Beach

2009-08-01T20:57:00.003+12:00

Luke, the sand connoisseur, at it again :)
With Dad

Contemplating the surf

Big brother Ben

This was my first trip out to the beach closest to us down south. It is a shingle beach, and the dog was in heaven! She loves stones and sticks, so she was just beside herself. The kids had a good run around, and climbed up a huge hill with a sheer drop down to the beach. Neil was with them, but I still nearly had kittens. Luke was allowed to have a crawl around now that everything is a bit drier, so he was happy.

Emily's first day at kindy

2009-07-27T11:27:00.003+12:00

Emily is now a big kindy girl. She started last Tuesday, and goes for 2 hours, three times a week. She is so proud of herself, I think because now she has her won thing. Ben has school, and I call Luke's therapy centre his school, so now she has something important too. She was a bit clingy and had a wee cry when I left her on the first day, but was very excited when Daddy, Ben, Luke and I all arrived to pick her up.

The second day was even smoother, with no tears, and she is rearing to go today, which is a good sign.

18 Months Old

2009-07-20T11:24:00.003+12:00

Luke when he was brand new.
Now that he's a used model :)

Showing off!

Yesterday, Luke was 18 months old. And how cute he is. He is progressing rapidly at the moment, despite another cold which has gone to his throat. So now old ladies say "Gosh, he's chesty isn't he? You should take him to the doctor- he needs antibiotics." However, I have had him to the doctor a million times already, and his chest is clear, it is just phlegm in his throat, and sounds like Darth Vader when he breathes at times, but IT IS NOT A CHEST INFECTION!!!!Anyway, that rant aside...

Luke is now pulling himself to stand, and cruising along the furniture. He is able to ride his rocking horse, and lean over to carefully fall off when he is finished. (I put him on it.) He attempts to move his ride on, but has limited success. He can make great car noises when he is on it though! He can walk pushing his block trolley. He can pull himself up in the kitchen to interfere with the microwave. He pulls himself up at the toilet (ewwwww!) but is not yet able to reach the toilet paper (yay!) to unravel and eat it. Paper is one of his favourite foods.

Communication wise, he is doing well too. He signs several words, such as bird, duck, fish, finished. He says many more, including no (of course!), hello daddy, I did it, I got it, and many more. He says 'star' and twinkles his fingers to request a rendition of his current fav, Twinkle Twinkle Little Star. His previous favourite Row Row Row Your Boat has been surpassed for this now. He loves to dance, and his signature move is the "Stevie Wonder", where he lies on his tummy with his arms out to the side, and weaves his head from side to side, just like the man himself.

He is a real boy, and loves playing with cars and especially with his brother and sister. This became especially apparent when mum had Ben and Emily for a couple of nights last week to give us a break. Luke, who is renowned for his easy-going and independent nature, was grizzly and had to be entertained. Turns out he is not as cruisey as I thought- he was bored, used to the constant stimulation from the others!

It has been a busy 18 months for us, and there have been a lot of changes, and some grief too. But all in all, Luke is a total joy, and we would not be without him.

We love you Lukey.

Disney Princesses on Ice

2009-07-14T08:15:00.003+12:00

Emily and Nana

After the show, in glamorous strawberry fairy dress, but made less glamorous by boring mother who insisted on boots and polar neck for warmth in winter!

Back in June, Mum and I took Emily to Christchurch to see Disney's Princesses on Ice show. And it was the most amazing show I have ever been too. Emily is quite shy at times, especially in new situations, and wouldn't go near poor mum for the first half. That all ended at half time, as she deigned to go with her Nana to choose a princess doll to take home. Little madam!

The show was just outstanding. We had good tickets, not in the first row, where the audience got to interact with the characters a little, but in the next row which was set further back. Em would have been totally freaked out by them coming too close to her! The costumes were excellent, the set was fabulous, and the whole show was magical. There was one scene from Sleeping Beauty where the dragon is chasing the prince, and they set fire to the ice. It was spectacular. Em took that all in her stride, but the poor little girl next to me was literally screaming and climbing onto her grandad, begging to go home. Two seconds later however, and she was laughing her head off, so all's well that ends well.

If Disney come back next year, we will definitely be going again, and I would totally recommend it to anyone with little girls, or who once was a little girl themselves. Emily says it is not for boys, and was busy reporting any rogue boys she spied to me! (I think this was mainly as she got to come without her brothers, as I am sure Ben would have loved it, even with all the little girls dressed up in their fairy or princess costumes!)

I also need to mention Sarah, whose blog I follow, who goes every year with her mom, and say that I did think of you both, and isn't it funny how this blogging thing works when you are half a world away, and have never met!

Celebration

2009-07-13T16:13:00.002+12:00

I told you we would be celebrating the heart news, and here they are!

The Results

2009-06-17T15:48:00.003+12:00

I got the call today, and the PDA has closed (as predicted) and the ASD is now classed as small (and is so small they haven't put a size on it, but we are going back for confirmation) which means that Luke WILL NEVER NEED HEART SURGERY!!!

Apparently the only thing he won't be able to do is go deep sea diving. I have always said that I will not put limits on what Luke can do, but I am happy with that one. The ocean is overrated!

I can't quite believe how lucky we are. I am very grateful and am over the moon, but I also feel for others who don't get the same good news we have.

There will be champagne corks popping here tonight!

Heart Check

2009-06-11T12:29:00.002+12:00

On Monday afternoon Luke is having an echo cardiogram to check his heart. He has not had one since the day after he was born. Then his PDA was still open, and he had an 8mm Atrial Septal Defect. Most doctors can't hear anything, but the new paediatrician reckons she can. I haven't met her yet- I was sick for the appointment, so Neil went with Luke instead. But I'm not overly keen on her from a couple of wee issues we have had. We shall see.

The best case scenario is that the holes will have spontaneously closed. Not likely, but it has been known to happen. You will hear me wherever you are if that is the case! Most likely is that is has shrunk, but is still there, or is the same size without causing any symptoms. That is okay too, and we will wait until he is old enough to have surgery via catheter instead of open heart surgery, which is a huge bonus. And I guess the worst case is that it has gotten worse, and he needs to have something done sooner.

So fingers crossed, and I will keep you posted.

More Beach Pics

2009-06-09T20:56:00.003+12:00

I have Aunty Kate well trained.

Monkey puzzle-yum!

Someone forgot to tell Luke he can't walk yet!

Hey Mum, check out the surf!

Mum and me making sand castles.

Australia

2009-06-06T08:20:00.008+12:00

Luke and I were winging our way to Australia this time last week, for 5 days of much warmer, sunnier weather. We were going to my dad's wedding, and Neil stayed home to look after the big kids and keep up with the washing. As Luke and I were sitting on the beach last Sunday, I got a test from N to say that it was snowing at home! Ben has been looking forward to the snow since we moved here- it doesn't snow where we used to live, so that was pretty exciting and I was a bit disappointed to have missed it. Here are some photos of Luke sampling the beach (literally at times!).

Therapy

2009-05-24T07:45:00.002+12:00

Here are some photos I took a couple of weeks ago of Luke and Em at therapy. Luke was working on some drawing, and Em took over the other side, and they were chatting to each other around the corner of the board about their drawings. Very cute. They both love drawing.

Mum making Luke look at the camera.

Busy drawing.

Practising standing to strengthen his legs and lower back.

Luke loved this and was feeling very pleased with himself :)