Tuesday, August 31, 2010

Lily's birthday

Lily turned 22 on Sunday.
The only thing she really wanted was a whip (she is into Indiana Jones at the moment!).
I couldn't bring myself to give her one but instead got the Indiana Jones game for the Wii where she can use the controller like a whip.
She wasn't really very impressed at first but now she's played the game a few times she's getting to like it.
We went out to lunch at Aqaba (one of Palmy's nice restaurants) and luckily it was only as we were leaving (and also luckily for me it was Hannah carrying Heidi) that we found out that you don;t need to use as much lactulose for ordinary children who are constipated as you do for those with Down syndrome.
Like every mother I know of a child with Down syndrome I keep a big bottle of lactulose on hand, so when Heidi was constipated, before thinking of anything else I just added a slug of lactulose to her morning bottle.
I think the medical terminology would be that "it had good effect" and we ended up finding all the plastic bags in the car and changing her so that she travelled home wearing only a nappy and a cardigan!
We also discovered that Heidi has been picking up some of the sign language we use with Isaac. I was holding her in church and noticed her slapping her thigh (this is the NZ sign for dog) only then did I realise the vicar had just said something about "God"!

In the afternoon we went to an afternoon tea organised by the Down syndrome association, Paul stayed home and realised it was the first time he's been alone in this house!
Hannah babysat so that Paul and I could go to the 5 O'clock service where there was a singing group "Sons of Korah" who were excellent singing psalms - it also meant I now have a present to give Paul for fathers Day or his birthday as they were selling CDs.
We ended the birthday day by watching the original movie of Batman. This is such a spoof, but Lily and Noah enjoyed it absolutely seriously and now if we want Noah to do anything we just have to call him "Robin"!

Monday, August 23, 2010

maybe winters ending

Its light by 7am now which makes a big difference to the ease of getting out of bed in the morning. It also means its still light when I give the little ones their bath in the evening.
We've even had a few days of playing outside (although mostly very muddy) and today I've got Isaac back to kindy as he is over his cough and cold.
Unfortunately he is hardly eating anything and at kindy this morning the teacher said it looked as though he'd lost weight.
We've decided not to start him at school for his 5th birthday after all as he is so fragile and the school teachers felt he was not ready.
Instead we are trying for an intensive care regime to try to up his weight and I am trying to steel myself for a play picnic each day (this is the main therapeutic time at Graz where children are allowed to explore food however they like) we have held 3 playpicnics now in Lily's bathroom with the bath ready run to pop Isaac into.
He will take a bit of various foods and will pick up a bottle and pretend to drink letting the fluid pour all down his front but he doesn;t eat big volumes,
Heidi joined in too yesterday and was delighted to be able to finger paint in custard!
She has been quite unwell over the weekend with a high temperature and cough. At one point Paul said to me "She's not really sick if she can make this much crying noise" He is mainly used to patients who need admission to intensive care for chest infections though so I said "Don't just think of her as a doctor but as her caregiver."
Anyway he kept me calm and he was right she recovered easily and is back to her usual self today.

Wednesday, August 18, 2010

weekend with Sam and Amika

Sam and Anika came down from Auckland on Friday then back on Monday so that Sam could run the half marathon.
We watched him from our balcony and he cruised past almost effortlessly to our great applause - the route went past our house twice so we were able to cheer and embarrass lots of people! He finished in 1 hour 37 minutes so was very pleased with himself. We invited Isaac's support worker from kindy and her son to cheer with us as her husband was also running - he has run lots and lots of marathons and at the age of 54 still was a long way ahead of Sam.
Yesterday two of our church home groups had a combined session - a party to say goodbye to someone emigrating to the UK. I was asked if it would be easier for us to have the party here so we wouldn't need a babysitter and when I enthusiastically said "yes" I did believe it would be. However cooking a ham, roasting potatoes and looking after two pre-schoolers with colds who spread food over all the floor made me wonder how I could have been so silly. But in the end it was great, our house is lovely for entertaining and we dug out all the English things I could find to make a display - which included Noah's world cup pyjamas,a pot of marmite, some Ready Brek, a Noddy and Winnie the Pooh toy and some English currency!
Someone brought a Guinness (technically Irish rather than English I guess) cake made from Nigella Lawson's recipe which was fantastic and there was plenty of food left over for our tea tonight!
Today Heidi was really hot with a nasty cough so her social worker cancelled her access visit, Isaac was still a bit unwell and hardly ate anything and it poured with rain most of the day. I got to school this afternoon to find that Noah had been sent to time out twice today for punching someone and for disrupting his music group and then at four o'clock this afternoon Heidi made it an even more miserable day by vomiting a load of milk (more like cottage cheese) all over me. I decided Paul ought to be informed of all this at work and he managed to get back home soon after five and help out!!

Tuesday, August 10, 2010

a good night's sleep

One of the benefits of parenting two pre-schoolers at my age is that I'm always ready for a good night's sleep! Like my years as a junior doctor I realise that sleep is the ultimate luxury, coming soon after breathing eating and drinking. I love to be able to go to bed soon after nine and don't do well at all if I'm up after eleven. Last night (Monday is our date night when Hannah baby sits) Paul wanted to go to a movie that finished after eleven but instead I made him change to a shorter one so we could be home soon after ten - we saw Killers and it was so funny I laughed out loud in the cinema (this is very unusual for me) They were advertised a new film which at first I honestly thought was called "Eat, sleep, love" - it's actually eat, pray, love.
Paul was away in Australia for three days last week so the need for sleep became even more intense as I had to manage mornings alone - I tend to have a shower think -"Oh I feel just lovely and I'm all ready" - then remember "now there's three more to dress!" (Noah does dress himself but if I don't get the clothes out and tell him which order they go on then he ends up in very odd assortments!
At home group last Tuesday I had been coughing my way through he evening. At the end everyone said "We won't stay for coffee, you sound like you need a good night's sleep" and I fell into bed by ten and slept without interruption for eight and a half hours. A week later and I still remember it fondly - most nights we are woken at about midnight by Isaac falling out of bed (we are trying him in the tiny bed that Paul made from a cot)
then we're woken at about one by Heidi crying (she will only settle for me but is gradually taking less time to settle) often around 3 or 4 by Noah sneaking downstairs to watch TV and soon after five by Isaac waking up and needing to come into our bed when we can all hopefully doze for another hour or so.
We turn the radio on soon after 6.30 and at 7am they have a bird call followed by the pips and some music. Isaac and Heidi love to bounce along to the music to start the day, then Paul makes our morning drinks and a bottle for Heidi and we start the school preparation rush.

Isaac has now started morning kindy and yesterday we had a meeting about starting school - they've decided he doesn't need a story writing book! He will do four mornings a week to start and for one term Noah and he will be at the same school. Then after Christmas Noah will move to the secondary school that Lily went to which we can see from the back garden. They have kindly agreed to take him on a year early and his primary school is keeping him one year extra at the moment so he can avoid the NZ custom of spending two years in an intermediate school.
The weather is finally brightening up and the children get to play occasionally in the garden and get very muddy.
We've just returned from a long hospital visit (3 different appointments for Isaac, getting weighed in paediatric clinic, audiology and dietitian) Heidi has managed to gain 900g in 4 weeks with us, but Isaac unfortunately has lost 150g so he's now 1.8kg less than his highest weight. He also has a moderate hearing loss and it seems his grommets are no longer working so may have fallen out. Combining this with the usual down time I feel after school meetings when I realise how behind other kids Isaac is, and I guess things aren't looking good for Isaac. He doesn't seem to mind though and once again I realise all I have to do is follow my children's' example and I'd deal with life much more easily!

Wednesday, August 4, 2010

Isaac's count down

Isaac's ORRS application is now in with everyone pretty sure he should get ORRS. As is policy for the application it doesn't mention he has Down syndrome except where they managed to slip in "His brother Noah has Down syndrome too"!
I have dragged my feet over it but next week we are changing to morning kindy 3 hours on Monday and Thursday and 4 hours on Wednesday. Isaac also starts his school visits - 4 Friday afternoons and then 3 Thursday mornings - this Friday afternoon he spends one and a half hours in the school library learning about the alphabet.
So looks like today and tomorrow are some of our last slow at home together days. I am full of cold (again) so we'll just have a quiet time together (with Heidi stopping it from being too quiet as she continues her dramatic development and climbs onto tables, slides off the bed and attempts to get down stairs!)
He seems entirely too small for school. It has been good having Heidi here so we can see there are children smaller than him!