Thursday, April 30, 2009

lots of appointments

Lily's ENT appointment was less frustrating than I expected. Not a great start when I realised the appointment was just with a registrar and when we had to wait 40 minutes with Isaac getting more and more restless, but when we met the doctor he explained a few things and listened to us. He said that Lily's main complaint -the pain in her ears with certain noises - was impossible to treat at least here (a few places try playing sounds through earphones gradually getting louder over a few weeks). He said that avoiding loud noise will make the ears gradually more sensitive to even quiet sounds.

He also said the ABR test (the objective test showing what sounds get through to the brain) probably won't be very helpful as it is how much speech Lily hears subjectively that matters. So he said yes to her hearing aid appointment at the hospital on Monday and thinks the aids will cost less than $4,600 and she can try before paying. The reason the hearing aids we were quoted were so expensive is that they have a computer in them which can try to reduce the sound frequencies that Lily finds uncomfortable.

Isaac has two hospital appointments today and not back-to-back either. So we've just returned from the orthoptist who said his squint is worse and he'll probably need his right eye patched soon to force him to use the left one. His glasses are on order though so she wants him to try them for a month or two as they will straighten up his eyes a bit too.

We'll have lunch at home, pick Noah up a bit early from school and then return to see the dietitian. Isaac still has not regained all the weight he lost when he started walking so he's still just under 11kg. It's hard to get much more than 900ml of food a day into him so I'm wondering if he should start on a more concentrated feed.

Luckily (well not for them) my friend's son is on children's ward at the moment so we were able to pop and see them this morning and she has kindly offered to look after Noah during the dietitian's appointment.

Next week I just have hospital appointments of hearing aid appointment for Lily on Monday and ENT clinic for Noah on Weds. After that we have two weeks hospital free!! until Isaac's paediatric appointment.

Tuesday, April 28, 2009


It was a beautiful sunrise this morning (and now it doesn't happen till nearly 7am I'm awake to see it!)

This was the view from our bedroom balcony. it has been so unseasonably hot that I was able to go out on the balcony at 7am. I was very surprised though to look down and see Paul running past - I thought he'd gone downstairs to make me a cup of coffee but he'd gone for a jog!

This may be because our son Sam has taken up jogging in a big way and is in the Palmerston half marathon and then a full marathon later this year. Hope Paul is not going to compete with him!

Hope this memory will keep me calm durign the ENT appointment for Lily I'm about to go to!

Monday, April 27, 2009

Isaac's first day at Kindy

My little boy who seems nothing but a baby (and weighs less than 11kg) has started at Kindergarten today! Another mum was starting her 3 year old daughter who looked enormous beside Isaac.
He went charging into kindy and didn't look around for me at all while I was in the office sorting out papers. He has a helper for 2 of the 2 1/2 hours and as he settled so beautifully I was free to come home.
I had a cup of coffee out on the patio with the door open wide in case kindy should phone. Except for his time in hospital and our weekend in Auckland and week in San Francisco I've not had time away from Isaac. I kept thinking he was just upstairs asleep.

I picked Noah up from school and walked with just him back to the kindy to Isaac who received us with mild interest. He is sitting watching TV now slightly tired but seeming to say "What's all the fuss about?" My last child leaving his mum - he could at least make a fuss!!!

Thursday, April 23, 2009

Wath I whod lick

The subject of J finding an always family came up very naturally the other morning when Lily was talking about going to Disneyland for her 21st birthday. J asked if she would be able to come and I said that she would be living with her always family by then not with us. The court may be moving extremely slowly but a decision will definitely be made by then (August) even if it is not the returning to mum that J would like.
We briefly talked about what kind of family she'd like and when I came down to breakfast I found this rather poignant writing by J.
Someone pointed out to me that it sounds a bit like our family (no swimming pool here though) so maybe J is bonding a bit to us after all even if it doesn't feel like it.
Since my last post we've had (and enjoyed) our housewarming party for the local Down syndrome association. More than 50 people (18 with DS and their families) fitted easily into our open plan downstairs.

Luckily the concrete wasn't poured that day but it was poured yesterday and I had to lock us all into the house to prevent any little footprints!

Whilst contaiend in the house and surfing the net, I managed to find and book some very cheap Qantas tickets to LA for Lily's birthday - she chose to travel on her birthday as she will then be able to celebrate her 21st in NZ and then again in Disneyland. This may not work as perfectly as she thinks as we leave Auckland at 2.30pm and then arrive in LA at 7.30 am which will feel like 2.30am to us!

Hannah has kindly offered to look after Isaac for the week - the thought of travelling with all his tube feeding equipment and doing Disneyland was just too much and TOO expensive. We almost decided the whole trip was too expensive but it is also our 30th wedding anniversary this year so we're taking it as a celebration of that too. (Paul has said "I'm not sure my dream honeymoon is taking two kids with DS to Disneyland" but Lily, Noah and I were able to persuade him otherwise!)

Monday, April 20, 2009

Feel Good day

Yesterday we went to the local production of The Sound of Music. It was wonderful, so old and corny but moving as always. Then Hannah showed me how to use "I tunes" she wants to buy a new I Pod and hopes to persuade me to buy her old one, well I tunes is kind of like to songs as amazon is to books - you can find loads of copies of your favourite out of date songs. I spent hours (and quite a lot of money on the credit card) downloading some favourite oldies like "The way you look tonight" and "The Old Rugged cross"
Also through many of the American blogs I read I was linked to the you tube of Susan Boyle appearing in Britain's Got Talent - a real fairytale clip.
NZ's only real national paper, the Sunday Star Times also had a great interview with Michael Fox - I think I'd like to read his book "Always Looking Up"- I thought this quote of his about having Parkinson's was applicable to having kids with DS too.
"The one choice I don't have is whether or not I have it. But beyond that my choices are infinite. How I approach it is up to me. It has a lot to do with - and this is hard - accepting it. And that doesn't mean being resigned or not looking for a cure. But if you're trying to get away from it or change it, you're going to wear yourself out."
So all in all a day full of thought provoking and feel good experiences - and we didn't even make it to church!

Saturday, April 18, 2009

My new sign

We're gradually (actually that should read Paul is gradually) getting on with finishing touches to the house like curtains. Tonight for the first time we will not have to scuttle into bed to avoid being seen by passing motorists, instead we'll just draw our bedroom curtains.

Paul has also put up my new sign. It's a copy of an old war time poster that was found at the bottom of a box of second hand books at Barter books second hand bookshop - they now make quite a lot of their money by selling facsimiles of the poster

It suits our house well don't you think?

Hannah has arrived back from her two days with Beth in Auckland and was here last night (just for long enough for Paul and I to go to the supermarket without any children) this morning she went as a helper to a teenage camp and we have to do a real rush tomorrow to pick her up from the camp after church, drop Isaac off with some friends and then the rest of us will watch the production of The Sound of Music, starring Lily's school drama teacher as Maria and the girl who runs their High School Musical dance group as Liesl.

I have just realised too that we have invited all families who have a child with DS to a house warming party here on Monday. It will also be a party to wish one of the boys well as he goes for his FOURTH and very risky open heart surgery the week after.

Unfortunately the driveway is no where near finished - I wonder if we could end up with wet concrete when everyone comes? That would be very interesting! So we're in for a busy time preparing for that now!

Thursday, April 16, 2009

Noah's sandwich

Noah is learning some independence so we should be grateful shouldn't we? Or maybe not when he uses at least four ounces of butter with a few hunks of cheese in it trying to make himself a cheese sandwich!

Wednesday, April 15, 2009

days at home

Suddenly it's quiet here (for us that is). Sam and Anika flew back to Auckland on Monday, Beth flew back last night and James drove up with his brother and sister-in-law and also Hannah who decided to hitch a ride and told Beth she will share her bed!
This means that any quietness here is counteracted by how busy their flat will be in Auckland with seven in it rather than the three they've grown used to.
This morning J's social worker and our social worker both visited and we only had the three youngest here. Still while I was talking with J and her social worker and the other one supervised the boys, Noah managed to unplug all of Lily's PlayStation and TV telling the social worker he wanted to do a dance and bring the equipment into her!
I tried to explain how difficult we are finding J's behaviour at the moment, but I think it just sounds like we're complaining. Somehow chaos and bad behaviour surrounds J but she isn't misbehaving herself.
Since then the man doing the driveway wanted to talk to me and in that short time Noah opened and closed the garage door and climbed out of Lily's bedroom window. - I knew I was tempting fate last week when I told his behaviour therapist that his behaviour was fine and got discharged from their service!

Monday, April 13, 2009

Easter pictures

We had a great Easter in our new home. Beth arrived on Thursday evening and was able to come with us to the High School musical dance group show. This group of around ten people with DS or other disabilities has practised hard each Saturday morning for the past term. it is run by the sister of Lily's friend who is about to turn professional and skate in Starlight express. Loads and loads of friends and relatives turned up to watch and it was sheer exuberance and joy seeing these kids give their all, dancing and singing to the best of their ability - sometimes not great ability but it didn't matter - everybody was celebrated!

We ended up with quite a stash of Easter eggs - this is how it looked altogether

we had a lovely family lunch with Sam and Anika and Beth all visiting from Auckland

On Easter Sunday afternoon we invited James and Anika's family round, our first true entertaining in the new house. The kids decided to put on a play and Noah was dressed as a king. At one point in the afternoon we couldn't find Noah, then noticed just a crown peeping out from the digger that has been out of bounds in our garden. When I got there Noah was totally engrossed and wearing his seat belt!

Tuesday, April 7, 2009

Miserable morning

Thanks so much for all the kind comments on our new home - I'm amazed how many people read this blog!
This morning proved however that even living in a purpose built child friendly house doesn't stop children's' misbehaviour. J seems to always be in the thick of things with chaos around her but never doing anything herself - she's like a catalyst and she gloats over others getting into trouble.
Anyway day started with me in bed waiting for a cup of coffee while Paul did the Wii fit downstairs. I could hear Lily and J arguing as Lily emptied the dishwasher, then a crashing noise as Isaac tried to help and broke a plate. Then Noah cried in a genuine sort of voice and said J had shut his hand in the toilet door, Paul went to sort this out and J refused to apologise giving her reason for doing it as 'At least I haven't drawn on the sofa' sure enough a blue crayon picture of Wall-e decorated two of our sofa cushions.
Paul called me downstairs to help clean up (he wasn't impressed when I said it was actually a really good picture that Noah had drawn!) then when we went back upstairs we discovered Isaac had been into the adults only lounge and emptied half a cup of coffee over the new carpet and our lovely coffee table book called 'Colonial houses of Palmerston North'
Noah threw his new lap top Wall-e as hard as he could onto the floor and refused to do anything I said from then on. He almost went to school in bare feet as he wouldn't get his shoes on, just spent the time looking for where I'd hidden his Wall-e.
I forgot I was the adult in the situation at this point, screamed at him and dragged him to school with very bad grace, feeling quite ashamed when we passed a friend of mine.
I had calmed down a bit by the time we got to school and poor Noah eventually apologised for drawing on the settee and I managed to apologised for being so cross.
I was pleased I had a long walk into town after dropping him at school, so I could expend some energy. I have to say though it wasn't much fun to realise it's school holidays in only three days time!

Sunday, April 5, 2009

lots of house photos

OK some unashamed boasting about our new home. There are a few photos of the only time ever the house will have been totally tidy - at the handover from Diamond homes' builder and many of how it looks after our settling in for a week.
the hall way
our master bedroom
and our ensuite
dining room on handover
and lived inkitchen on handover - the aga just a very expensive ornament as nobody could light it

and once it's lived in using the aga for cheating at the ironing (you just leave folded clothes on the warm top and the creases drop out)

the living room looking through to the playroom - note our household rules which are in fabric letters on the walls - it is amazing how almost any misdemeanour fits with having a house that is not safe or calm

and the playroom decorated with bricks thrown by Isaac

looking the other way to the kitchen from the living room

Noah's bedroom with a little bed that Isaac will one day sleep in

Hannah's bedroom - I was worried that the yellow walls might be a bit overwhelming, but you can hardly see them now!

two views of our upstairs (adults only) lounge

and the major impact that building has had on our garden - maybe we were a little naive to think we wouldn't need any work there!

Wednesday, April 1, 2009

back on line in new home

Well we've done it - suddenly we know exactly what possessions we have as they've all been transferred from one house to the other.
The new house is great - still feels a little like living in a very posh hotel rather than our home, but we're getting there fast. Isaac has helped by already christening the carpet, weeing on it once I took his nappy off for a bath.
The phone was connected today and the Internet is working (it took 2 weeks to sort that out last move) the only thing still to do is get a satellite dish so we can watch TV. With it being a new house there isn't even a TV aerial on the roof. No one can come till April 17th, kids are finding this hard, Lily sat by the TV last night saying "House is actually on now and I can't watch it" I felt the same about Boston Legal but didn't complain so loudly!
The aga is now working and pumping out heat. We have so far used it to dry washing, make toast and very bravely tonight make roast chicken.