Thursday, April 30, 2009
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
Monday, April 27, 2009
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
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
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
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
Wednesday, April 15, 2009
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
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
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
and our ensuite
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
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.