Friday, August 29, 2008
Lily's birthday
Beth arrived safely last night and spent the night at Hannah's flat which is just across the road from us, in handy reach of our washing machine! They came across for breakfast this morning having been phoned by Lily to remind them. You can just see Lily amongst the others.
Lily enjoyed opening all her presents and cards
Today was a teacher only day at Lily's school which of course she believed was in honour of her birthday. She was supposed to have work experience at Farmer's department store this morning, but was cheeky enough to ask her supervisor if she could have the day off as it was her birthday! As the kids are all in different places over this weekend Lily is going to end up with several celebrations all with different people. This is the first at an Indian restaurant with Beth, Isaac, me and Sam who took the afternoon off work to come as he will be snowboarding for the rest of the weekendLily spent her birthday money from both sets of grandparents on new playstation games. Here she is playing the monster rumble Buzz game with Noah and J
they persuaded Beth to join in too, then Joe and Abi called round and watchedLily has said for a long time she planned to dye her hair red for her birthday and had sneakily bought some bright permanaent dye and hidden it under her bed. As she so wanted it and is an adult, we agreed to it. Beth helped her and this picture shows just how red it is! and this is once it dried ready to go out to a local pizza restaurant with the young people's Down Syndrome Group that Hannah helps run.
Lily enjoyed opening all her presents and cards
Today was a teacher only day at Lily's school which of course she believed was in honour of her birthday. She was supposed to have work experience at Farmer's department store this morning, but was cheeky enough to ask her supervisor if she could have the day off as it was her birthday! As the kids are all in different places over this weekend Lily is going to end up with several celebrations all with different people. This is the first at an Indian restaurant with Beth, Isaac, me and Sam who took the afternoon off work to come as he will be snowboarding for the rest of the weekendLily spent her birthday money from both sets of grandparents on new playstation games. Here she is playing the monster rumble Buzz game with Noah and J
they persuaded Beth to join in too, then Joe and Abi called round and watchedLily has said for a long time she planned to dye her hair red for her birthday and had sneakily bought some bright permanaent dye and hidden it under her bed. As she so wanted it and is an adult, we agreed to it. Beth helped her and this picture shows just how red it is! and this is once it dried ready to go out to a local pizza restaurant with the young people's Down Syndrome Group that Hannah helps run.
Thursday, August 28, 2008
Paul in Vietnam
These are some of the photos Paul took during his two day conference in Vietnam. It looks so beautiful it almost makes it worth the 27 hour journey to get there and 24 hour journey home!
this was his room - Yes the whole semi-detached house! this was the view from his room -the kids love seeing someone with the triangular hat, as we'd got out a library book on Vietnam and it showed these hats
this is the hotel beach - Paul walked along it at 5am the first mornign while he was jet lagged. The resort is called Sandy beach resort, although it doesn't sound very Vietnamese it's obviously an appropriate name!
this was the tray of fruit waiting for him in his room - we have no idea what the fruit on the right is
to prove he was actually there! this is Paul at the market - he bought Beth and Hannah a bag at the stall on the left
another shot of the market - people drove through this gap on their motor bikes! Paul bought bangles for J and Lily and T-shirts for Noah and Isaac here
this was his room - Yes the whole semi-detached house! this was the view from his room -the kids love seeing someone with the triangular hat, as we'd got out a library book on Vietnam and it showed these hats
this is the hotel beach - Paul walked along it at 5am the first mornign while he was jet lagged. The resort is called Sandy beach resort, although it doesn't sound very Vietnamese it's obviously an appropriate name!
this was the tray of fruit waiting for him in his room - we have no idea what the fruit on the right is
to prove he was actually there! this is Paul at the market - he bought Beth and Hannah a bag at the stall on the left
another shot of the market - people drove through this gap on their motor bikes! Paul bought bangles for J and Lily and T-shirts for Noah and Isaac here
Isaac's pain explained
Today was the last of my busy therapy days (although a visit from the home care nurse tomorrow has now been added to the schedule) and Paul returned from Vietnam and Beth is arriving tonight for a long weekend with us. So three reasons for celebration .... well possibly four as Isaac's barium meal showed why he has pain.
I got to X-Ray at 2pm and unfortunately there was an emergency case so we couldn't be seen till 2.40. The good thing about this was it meant Paul got there just in time for the barium meal. He got into Auckland from Singapore at around 10.30 and phoned to say he'd arrived but they couldn't get the hold door open to get out the luggage!! Luckily it was retrieved (by winch) in time for him to catch his booked flight to Palmy due to arrive at 2.10. This of course meant I'd be at the hospital when he arrived. He'd left behind all his keys so would have to meet me at the hospital but didn't want to bring all his luggage to X-Ray.
In the end I had to park the car on a designated road leave it unlocked, then Paul had to get a taxi there, store his suitcase and meet me in x-ray.
He arrived just as they called us in and Isaac was so thrilled to see his daddy that he hardly noticed he was having a barium meal.
I stood behind the screen as they put the barium through his gastrostomy tube and could see the stomach ballooning then two smaller balloons above it right in front of his heart. Turns out these were a hiatus hernia and some reflux, a side effect of his fundoplication surgery (which he had 2 years ago at the same time as his gastrostomy). This would explain why he can't cope with large volumes of feed and why he wakes at night with pain and tries to sleep sitting up.
We'll hopefully get a paediatrician appointment fairly soon to find out if he needs further surgery.
I got to X-Ray at 2pm and unfortunately there was an emergency case so we couldn't be seen till 2.40. The good thing about this was it meant Paul got there just in time for the barium meal. He got into Auckland from Singapore at around 10.30 and phoned to say he'd arrived but they couldn't get the hold door open to get out the luggage!! Luckily it was retrieved (by winch) in time for him to catch his booked flight to Palmy due to arrive at 2.10. This of course meant I'd be at the hospital when he arrived. He'd left behind all his keys so would have to meet me at the hospital but didn't want to bring all his luggage to X-Ray.
In the end I had to park the car on a designated road leave it unlocked, then Paul had to get a taxi there, store his suitcase and meet me in x-ray.
He arrived just as they called us in and Isaac was so thrilled to see his daddy that he hardly noticed he was having a barium meal.
I stood behind the screen as they put the barium through his gastrostomy tube and could see the stomach ballooning then two smaller balloons above it right in front of his heart. Turns out these were a hiatus hernia and some reflux, a side effect of his fundoplication surgery (which he had 2 years ago at the same time as his gastrostomy). This would explain why he can't cope with large volumes of feed and why he wakes at night with pain and tries to sleep sitting up.
We'll hopefully get a paediatrician appointment fairly soon to find out if he needs further surgery.
Wednesday, August 27, 2008
Steroids for Lily
A Busy few days for hospital visits and therapists - 5 appointments in 3 days. Yesterday Isaac saw his physiotherapist and early intervention teacher and Noah saw the behaviour therapist. Today we had Isaac's feeding clinic and Lily's ENT appointment and tomorrow Isaac has a Barium meal. Add in that J is changing social workers and Paul is in Vietnam and you can see I'm quite busy!
Lily came with me to Isaac's feeding clinic and got rather a lot of chocolate mousse on her as Isaac threw it at her. Isaac was introduced to the joys of chocolate finger biscuits for the first time which he loved. I will have to buy some and take a photo of how messy he gets.
We went from there to the ENT clinic. Lily's hearing is definitely down a lot and as it's a fairly sudden onset the consultant wants to try her with high dose steroids. This brings back memories of Noah being treated for infantile spasms. Still at least we know what to expect with bad moods, hunger and not sleeping! We've decided not to start them till Saturday so at least Lily won't be under their influence for her birthday.
Lily came with me to Isaac's feeding clinic and got rather a lot of chocolate mousse on her as Isaac threw it at her. Isaac was introduced to the joys of chocolate finger biscuits for the first time which he loved. I will have to buy some and take a photo of how messy he gets.
We went from there to the ENT clinic. Lily's hearing is definitely down a lot and as it's a fairly sudden onset the consultant wants to try her with high dose steroids. This brings back memories of Noah being treated for infantile spasms. Still at least we know what to expect with bad moods, hunger and not sleeping! We've decided not to start them till Saturday so at least Lily won't be under their influence for her birthday.
Tuesday, August 26, 2008
this little light of mine and J's stories
Forgot to mention that in the children's service they also gave out lit night lights to all the children (and nearly 20 year olds called Lily) who had to carry them from the front of the church back to their seats - not good for my tension levels but no one's hair got set on fire, the order of service didn't burn and Isaac didn't knock one off the shelf!
They dimmed the lights in the church and sang "This little light of mine" in candlelight.
I hadn't realised what impact this had on Noah until last night when he put on our CD of old-fashioned children's music to listen to it again, then got into my bed this morning singing it.
I got the CD when we bought four remaindered books for $20 at our local christian book store - I thought they looked a bit corny and very dated with songs I remember from my old Sunday school days - but still at $5 a book (including CD) it wasn't risking much. And surprisingly the kids love them - we often put one on in the evening before bedtime stories. Because the words are so repetitive they are quite easy to sign too and Isaac tries to copy 'Jesus loves me'
Lily got a surprise phone call today. I actually picked up the phone and when this person I didn't know asked to speak to Lily, I asked what t was about, having learnt by experience that people doing surveys or wanting to check on services Lily gets often end up in a real muddle once they speak to her. Anyway it was a man from Wattie's food (NZ equivalent of Heinz). There had been a competition for people to nominate good sport's coaches and Lily (through her school) had nominated Helen her coach for special Olympics swimming. Lily's name had been pulled at random from the people who entered and she has won $100 of vouchers to spend at Stirling sports shop.
I handed the phone to Lily and when he told her she started literally jumping for joy and shouting with delight -- I think it made the man's day!
At tea time I got Lily to tell us all about it and this led to another of J's stories. There are all sorts of issues that children in foster care have and multiple reasons for not quite understanding what it means to tell the truth but that's not what I'm on about here - it's more the way that J is so imaginative and so believable and how each time I can't believe I've been taken in.
J told us she'd won a competition once and got vouchers to spend at the Plaza (our local shopping centre) - I'm open and believing her here. I asked what competition it was and she was a little hazy but with some prompting said a colouring competition - my antennae were vibrating a little here. I asked where she'd spent the money and she started naming shops that have only been around for the last month - by now I'm realising this is made up. And then she embellishes it a little too much. "And I got a Farmers card, that means you can get whatever you like at Farmers for free" I said then "This is a good story J" I want her to realise I know its not true without making a big deal out of it.
It's strange she should have been able to dupe me as earlier in the day I had an odd phone call from the woman who arranges access visits saying she'd had a phone call from J's mother who believed this weekend's access was cancelled. J had told her that we didn't want her to have access as we wanted her to go to Lily's birthday party! I would never interfere with access arrangements and have never done so in the 6 months J's been with us so its amazing she could get both her mum and the access supervisor believing this.
Then this morning J has no coat or fleece jacket to wear to school - that's a total of 3 coats and 1 fleece left at school or mum's house. When I told the taxi driver she said "But I checked after school yesterday and J said she had her coat and fleece with her."
I just hope one day J can put her story telling and believability to a better use.
Monday, August 25, 2008
Children's service
I drove to church yesterday morning with Noah saying "Mummy hates driving" and J saying "Paul doesn't have to keep moving the car in and out to park it between the lines"
It was pouring with rain - what's new? and we got quite wet walking across the square to McDonalds where I treated them to lunch. Lily J and I had ice-cream sundaes while Noah watched and was reminded how he'd already had his pudding when he ate the remains of Sam's birthday cake at 7am this morning.
At 5pm there was a special children's service at church. It started with Noah walking slowly up the aisle then forward onto the high altar by which time I'd realised this wasn't how it was supposed to start and went to retrieve him. it then started properly with the choir and children's choir processing in followed by the Sunday School with Noah and J carrying banners.
Lily Isaac and I were sitting in the congregation and Isaac lent forward to pull the hair of the lady in front of us who I didn't know at all.
I noticed a little girl with Down syndrome in the congregation and sat there thinking 'how unusual to have a child with DS here that I've never met' At the end of the service her mum came to say hello and I realised that I did know them and had in fact been amongst their first visitors in the special care baby unit, so it was great to catch up with them.
The service was good but ended with a hasty getaway after this little girl (aided by Lily and J) started playing the church piano and Noah pulled the covers off the drum kit and was about to start playing them.
It was pouring with rain - what's new? and we got quite wet walking across the square to McDonalds where I treated them to lunch. Lily J and I had ice-cream sundaes while Noah watched and was reminded how he'd already had his pudding when he ate the remains of Sam's birthday cake at 7am this morning.
At 5pm there was a special children's service at church. It started with Noah walking slowly up the aisle then forward onto the high altar by which time I'd realised this wasn't how it was supposed to start and went to retrieve him. it then started properly with the choir and children's choir processing in followed by the Sunday School with Noah and J carrying banners.
Lily Isaac and I were sitting in the congregation and Isaac lent forward to pull the hair of the lady in front of us who I didn't know at all.
I noticed a little girl with Down syndrome in the congregation and sat there thinking 'how unusual to have a child with DS here that I've never met' At the end of the service her mum came to say hello and I realised that I did know them and had in fact been amongst their first visitors in the special care baby unit, so it was great to catch up with them.
The service was good but ended with a hasty getaway after this little girl (aided by Lily and J) started playing the church piano and Noah pulled the covers off the drum kit and was about to start playing them.
Saturday, August 23, 2008
Into birthday season
The past two days it has poured with rain - I should never have posted about the spring weather! Yesterday my jeans got soaked to the knees when I took Noah to school. I had half an hour to try to dry out my shoes and raincoat then off to the dentist. My gold filling fell out a week ago and was gradually becoming more sensitive to hot and cold and being eaten on. Unfortunately the dentist said there was quite a lot of decay so I have to go back for a 50 minute appointment when I can find a time that Hannah can babysit but for now he put in a temporary filling.
It was Sam's quarter century birthday and he'd treated himself to a day off work. Kind family boy that he is, he used some of his time coming with me to surprise Noah by meeting him from school (I was pleased when one little boy asked Sam if he was Noah's uncle - that would make me Sam's sister!) then acting as chauffeur for Hannah during her break at work taking her to uni to hand in an assignment. In fact she'd forgotten to print out a cover sheet for the assignment so Sam even did that for her!
Today Sam and Anika and Joe and Abi came over and we all went out to lunch together - sending Beth a photo of us all on her cell phone so she could see what she was missing.
It was Sam's quarter century birthday and he'd treated himself to a day off work. Kind family boy that he is, he used some of his time coming with me to surprise Noah by meeting him from school (I was pleased when one little boy asked Sam if he was Noah's uncle - that would make me Sam's sister!) then acting as chauffeur for Hannah during her break at work taking her to uni to hand in an assignment. In fact she'd forgotten to print out a cover sheet for the assignment so Sam even did that for her!
Today Sam and Anika and Joe and Abi came over and we all went out to lunch together - sending Beth a photo of us all on her cell phone so she could see what she was missing.
anti-clockwise from left front - Noah, Hannah, Anika, Sam, Joe, Abi, Lily
Lily gave Sam a photo frame covered with shells she'd made at school. She put in two photos of Beth, Hannah and her as young children (which I was cross she had sneaked to school without asking) saying it was so Sam would remember then if they died!
Lily giving Sam her present (in foreground wrapped in purple paper)-she'd spent a long while wrapping it herself and unfortunately a bit of sellotape was stuck to one of the photos but luckily didn't tear it
Thursday, August 21, 2008
Could spring be coming?
Mostly a good day today. A great start when I called Noah to get dressed only to find he'd already dressed himself - as you can see he was wearing a T-shirt over a skivvy which wouldn't have been my choice but I was so proud of his independence I didn't have the heart to make him change.
Today dawned very cold, ice on the bins and car when I went to put out the bins. But it soon warmed up and we even spent some time in the garden after school. It's the first time we've used the garden in our rental house.
Noah and J wore themselves out on the trampoline while I made up different jumps they had to do and Isaac was quite keen to join them. Then J pushed Isaac around in his little car which he loved.
We drove past out house site too and all the metal grid is down ready to have the concrete poured, so it's good to see progress.
Wednesday, August 20, 2008
..and when the behaviour therapist's NOT here
Maybe Noah thought he was just too good for the behaviour therapists visit yesterday - he certainly showing us different today!
It started at 8.20 is morning when Isaac's feeding therapist phoned to say she was full of cold and cancelling today's clinic. Terrible mother that I am, I was pleased - a morning off and another week to get to grips with his feeding chart - we keep forgetting to try to feed him and then record it.
Anyway I decided I'd walk straight from Noah's school to town for a morning at the library and shopping for our birthday season which starts on Friday (Sam, then 1 week later Lily, a week with 2 twenty year olds then Rachel turns 21 and 6 days after that Paul turns fifty something)
I told Noah to put his socks and shoes on while I sorted out the library books, got my shoes and coat on, stopped Isaac's feeding pump, searched for his shoes then gave up and put him in a sleeping bag, squeezed Isaac into his pushchair and stood by the front door.
Noah had spent his time very kindly putting our chairs up onto the table like they do to wash the floor at school. The more I tried to push him to get ready, the worse he got and this is a day when his class were having a special treat day and a bus would be waiting for them all at school.
The class were going to play mini golf in the morning, have lunch at the esplanade park and go swimming in the afternoon. When i picked Noah up from school his teacher took me aside (always an ominous sign) he hadn't been swimming in the afternoon as his behaviour was deteriorating and they thought he was tired. He had been grabbed just in time by his teacher as he was about to escape through the doors of the mini-golf venue, and had refused to get off the trampolines at the esplanade.
Since we've been home, I carefully sat him in front of the TV with explanation that I need to make a support phone call to a parent of a child with DS. During this time he pulled out his new toy which I thought I'd hidden and got out everything needed (including a sharp knife) for making a cheese sandwich.
I think he's alright now, watching the Disney DVD 'Dinosaur' - it just makes me wonder how much fun its going to be next week with Paul away?
It started at 8.20 is morning when Isaac's feeding therapist phoned to say she was full of cold and cancelling today's clinic. Terrible mother that I am, I was pleased - a morning off and another week to get to grips with his feeding chart - we keep forgetting to try to feed him and then record it.
Anyway I decided I'd walk straight from Noah's school to town for a morning at the library and shopping for our birthday season which starts on Friday (Sam, then 1 week later Lily, a week with 2 twenty year olds then Rachel turns 21 and 6 days after that Paul turns fifty something)
I told Noah to put his socks and shoes on while I sorted out the library books, got my shoes and coat on, stopped Isaac's feeding pump, searched for his shoes then gave up and put him in a sleeping bag, squeezed Isaac into his pushchair and stood by the front door.
Noah had spent his time very kindly putting our chairs up onto the table like they do to wash the floor at school. The more I tried to push him to get ready, the worse he got and this is a day when his class were having a special treat day and a bus would be waiting for them all at school.
The class were going to play mini golf in the morning, have lunch at the esplanade park and go swimming in the afternoon. When i picked Noah up from school his teacher took me aside (always an ominous sign) he hadn't been swimming in the afternoon as his behaviour was deteriorating and they thought he was tired. He had been grabbed just in time by his teacher as he was about to escape through the doors of the mini-golf venue, and had refused to get off the trampolines at the esplanade.
Since we've been home, I carefully sat him in front of the TV with explanation that I need to make a support phone call to a parent of a child with DS. During this time he pulled out his new toy which I thought I'd hidden and got out everything needed (including a sharp knife) for making a cheese sandwich.
I think he's alright now, watching the Disney DVD 'Dinosaur' - it just makes me wonder how much fun its going to be next week with Paul away?
Tuesday, August 19, 2008
Noah's behaviour therapist
Way back in April Noah was referred to the behaviour service for children with an intellectual disability. Since then things have got better then worse then up and down a bit. Anyway we finally made it to the top of the list and a therapist came round to interview me the other day, then Noah today.
"What behaviours do I find difficult?" Well safety most important I guess - things he's done like disappearing from our Sydney hotel room, climbing on a friend's roof, running across a road, sticking his fingers in an electrical socket, getting onto the luggage carousel at the airport ( I moved so fast I got him just before he went through the rubber curtain!) trying to turn on the gas fire, turning all the rings and oven on on the cooker one morning. Then there's the nuisance value of when he simply says No or just not doing things he's been asked to do and the school don't like the way he spits and hits out at his buddies.
I mentioned that Noah is a lovely boy though and he showed that at her home visit today. He acted beautifully and was very polite to the therapist, although when she asked him to talk loudly as she was a little deaf, he asked if she had a lap top (hearing aids) in her ear!
So she didn't see any behaviour issues at all today, but she's returnign next week and then her next step is to talk to the school who hopefully will show her another side of Noah. After that we get to the best bit where we're given ideas and techniques that might improve things
"What behaviours do I find difficult?" Well safety most important I guess - things he's done like disappearing from our Sydney hotel room, climbing on a friend's roof, running across a road, sticking his fingers in an electrical socket, getting onto the luggage carousel at the airport ( I moved so fast I got him just before he went through the rubber curtain!) trying to turn on the gas fire, turning all the rings and oven on on the cooker one morning. Then there's the nuisance value of when he simply says No or just not doing things he's been asked to do and the school don't like the way he spits and hits out at his buddies.
I mentioned that Noah is a lovely boy though and he showed that at her home visit today. He acted beautifully and was very polite to the therapist, although when she asked him to talk loudly as she was a little deaf, he asked if she had a lap top (hearing aids) in her ear!
So she didn't see any behaviour issues at all today, but she's returnign next week and then her next step is to talk to the school who hopefully will show her another side of Noah. After that we get to the best bit where we're given ideas and techniques that might improve things
Monday, August 18, 2008
eye clinic
Knowing Isaac had eye clinic today and knowing how long a wait that may mean, I was not pleased when Noah woke us this morning saying his nose was blocked. As Noah had an extremely runny nose I decided I would be most unpopular if I sent him to school, so even though he isn't really unwell and even though it meant he would have to come along to eye clinic I kept him home from school.
He had a great morning with no behaviour problems (so maybe he is a little unwell!!) - he even practised how to behave with his buddies at school. He has recently got back into the habit of hitting out and spitting at his buddies (class members who support him in the playground and in some lessons). Noah has thought up his own list of rules - NO to spitting, hitting, punching and throwing bark and YES to listening, sitting down and going out to play when it's time (he has no trouble with this last one, its just that he likes playtime!) and now he wants to practise being about to hit someone then signing 'stop' and 'think'.
The last time we went to eye clinic we had to wait a hour just for the orthoptist appointment and the opthalmologist usually runs even later, so today I went prepared with stickers, books and toys for the boys - amazingly we were then seen bang on time 1.30 for the orthoptist, half an hour in the cafe while the eye drops took effect then 2.15 for the opthalmologist.
Noah behaved well sitting still at the orthoptists and just telling Isaac what each picture was. It was a bit harder in the consulting room as there was a sink with a long lever for the tap that you could turn on with your foot, Noah decided he needed to wash his face and it was only when I pulled out his favourite tassel to stroke that he managed to sit down.
Isaac's squint is a bit worse, but he is still able to use both eyes and both are equally long sighted. He is also developing keratoconus which apparently means it will be quite hard to get glasses to totally correct his sight.
The opthalmologist said he will probably need glasses fairly soon but he thinks Isaac would just pull them off at the moment. He said Isaac will possibly need further surgery for his squint in a year or two but it would be mainly cosmetic not likely to improve his sight - not sure that we'd like that as he is quite an anaesthetic risk.
He had a great morning with no behaviour problems (so maybe he is a little unwell!!) - he even practised how to behave with his buddies at school. He has recently got back into the habit of hitting out and spitting at his buddies (class members who support him in the playground and in some lessons). Noah has thought up his own list of rules - NO to spitting, hitting, punching and throwing bark and YES to listening, sitting down and going out to play when it's time (he has no trouble with this last one, its just that he likes playtime!) and now he wants to practise being about to hit someone then signing 'stop' and 'think'.
The last time we went to eye clinic we had to wait a hour just for the orthoptist appointment and the opthalmologist usually runs even later, so today I went prepared with stickers, books and toys for the boys - amazingly we were then seen bang on time 1.30 for the orthoptist, half an hour in the cafe while the eye drops took effect then 2.15 for the opthalmologist.
Noah behaved well sitting still at the orthoptists and just telling Isaac what each picture was. It was a bit harder in the consulting room as there was a sink with a long lever for the tap that you could turn on with your foot, Noah decided he needed to wash his face and it was only when I pulled out his favourite tassel to stroke that he managed to sit down.
Isaac's squint is a bit worse, but he is still able to use both eyes and both are equally long sighted. He is also developing keratoconus which apparently means it will be quite hard to get glasses to totally correct his sight.
The opthalmologist said he will probably need glasses fairly soon but he thinks Isaac would just pull them off at the moment. He said Isaac will possibly need further surgery for his squint in a year or two but it would be mainly cosmetic not likely to improve his sight - not sure that we'd like that as he is quite an anaesthetic risk.
Friday, August 15, 2008
Isaac's spreadsheet
At our last feeding clinic, the SLT suggested we keep an excel spreadsheet of Isaac's behaviour at each meal.
We have to offer him spoonfuls of food and keep data on how many times he opens his mouth compared to how often he turns away - he doesn't have to keep the food in his mouth or swallow, just allow it to touch his mouth. We have to try to put the spoon against his mouth and follow his head movements until he gives in and opens his mouth - I think the jargon for this is "escape extinction"
We tried with chocolate sauce at tea last night and he opened his mouth about 3 times then dribbled out the chocolate. As you can see on the photo (remember this is just two small teaspoonfuls of chocolate sauce) it is amazing how much more mess it makes to try to feed a child where nothing stays in their mouth than one who just opens their mouth and swallows.
Thursday, August 14, 2008
Paul's passport
Paul is supposed to be speaking at a conference in Vietnam in just over a weeks time. He sent his passport off to get a visa for entry only to have it returned because there was no room to put the visa! This meant that he had less than 2 weeks to get a new British passport, a returning residents visa and a Vietnamese visa, so we weren't too hopeful.
If you're applying for a passport in the UK, you can pay extra for a quick turnaround, but they don't have that option applying in NZ, so Paul just put the dates he hoped to travel in a covering letter and hoped for the best.
What a surprise this morning when his new British passport arrived from Wellington- that's a turn round time of 3 days! Incredible and it also means he has an excuse to leave the hospital and have lunch with me in town while I give him the passport. Only problem is the $321 cost!
Tuesday, August 12, 2008
Isaac is signing!
As I was getting Isaac ready for bed, I said "Let's find you a book" and looked down to see him signing book - I was so pleased - this is the first time he's signed without us signing first!
Hannah happened to be visiting (at tea time suprisingly!!) and I got her to make signs for Isaac to copy while I took photos
so proudly presenting Isaac signing.....
Noah (2 fingers like fingerspelling N but on nose as Noah sounds like nose)
Hannah happened to be visiting (at tea time suprisingly!!) and I got her to make signs for Isaac to copy while I took photos
so proudly presenting Isaac signing.....
book (hands together then fan apart like a book)
mummy (the 3 fingers used to fingerspell M but on the head rather than hand as this is easier for small children)
bed (hand to side of face)
Noah (2 fingers like fingerspelling N but on nose as Noah sounds like nose)
Beauty and the Beast continued
Noah is still thinking about 'Beauty and the Beast'. He got in our bed this morning and told Paul he was the beast, I was Belle and he was chip!
Being Belle has almost been enough to get me through the very wet walk to school this morning including Noah soaking his trousers right up to his knees by walking straight through a deep puddle and waiting for the traffic lights to do another full long cycle as Noah was so far behind me when they first changed in our favour!
J is also excited about Beauty and the Beast as her class is going on a trip backstage to see all the costumes and sets, although she lets us know about her dance lessons and recital when she says "It's not really that exciting for me because I've actually performed on stage at the Regent."
Being Belle has almost been enough to get me through the very wet walk to school this morning including Noah soaking his trousers right up to his knees by walking straight through a deep puddle and waiting for the traffic lights to do another full long cycle as Noah was so far behind me when they first changed in our favour!
J is also excited about Beauty and the Beast as her class is going on a trip backstage to see all the costumes and sets, although she lets us know about her dance lessons and recital when she says "It's not really that exciting for me because I've actually performed on stage at the Regent."
Monday, August 11, 2008
Beauty and the Beast
It always amazes me that a small city (80,000) like Palmerston North can put on such great musicals. We (Paul, me, Hannah, Lily, Noah and J)went to see Beauty and the Beast yesterday and it was fantastic! The costumes were made by Weta workshops who made the Lord of the Rings films and were beautiful and because Palmy is such a small place we found we knew some people in the production - it was directed by Dean Mckaress who runs the drama/dance groups that Lily and go to, Belle was played by Lily's school drama teacher and one of the girls from church played a spoon in the "Be my guest" song.
It was quite a rush getting there for 4pm, Hannah was working at Max (clothes shop) until 3pm and the rest of us went to a goodbye lunch for some friends from church. Noah was quite hard work there, but it meant I got to look over the whole of the lovely house and get ideas for our new house!
Afterwards while we went to the show, we left Isaac with a family from church who'd offered to look after him - it was the first time he's ever been left with someone from outside our family, but he had a great time being spoiled by their kids.
When we went into the theatre, it was lit like a dark woods and an old storyteller was sitting motionless on the stage. Unfortunately J who was sitting by me decided the storyteller was 'freaky' and thought he was looking straight at her with his eyes turning yellow. I suggested she just close her eyes for a while but she said that wouldn't help as he would still be staring at her. Luckily once the performance started she was fine and quiet.
Noah was not so quiet though and kept asking in a loud voice "Where's the Beast?" then "I don;t like the Beast" then he had to comment each time any scenery was moved. There were two loud bangs and fireworks at the start too when the prince was turned into the Beast, but fortunately we had been warned about these so Noah coped with them fairly well.
It was a long performace and didn't finish till getting on for 7pm so we let the kids eat drive through McDonalds in the car for a treat, then straight to bed when we got home - Noah was still muttering to himself about the beast as he fell asleep!
It was quite a rush getting there for 4pm, Hannah was working at Max (clothes shop) until 3pm and the rest of us went to a goodbye lunch for some friends from church. Noah was quite hard work there, but it meant I got to look over the whole of the lovely house and get ideas for our new house!
Afterwards while we went to the show, we left Isaac with a family from church who'd offered to look after him - it was the first time he's ever been left with someone from outside our family, but he had a great time being spoiled by their kids.
When we went into the theatre, it was lit like a dark woods and an old storyteller was sitting motionless on the stage. Unfortunately J who was sitting by me decided the storyteller was 'freaky' and thought he was looking straight at her with his eyes turning yellow. I suggested she just close her eyes for a while but she said that wouldn't help as he would still be staring at her. Luckily once the performance started she was fine and quiet.
Noah was not so quiet though and kept asking in a loud voice "Where's the Beast?" then "I don;t like the Beast" then he had to comment each time any scenery was moved. There were two loud bangs and fireworks at the start too when the prince was turned into the Beast, but fortunately we had been warned about these so Noah coped with them fairly well.
It was a long performace and didn't finish till getting on for 7pm so we let the kids eat drive through McDonalds in the car for a treat, then straight to bed when we got home - Noah was still muttering to himself about the beast as he fell asleep!
Thursday, August 7, 2008
Jammy face, Lily's ears and police cars
I was very brave yesterday and drove the car twice - I hate driving - but Isaac had his feeding clinic in the morning at the hospital and Lily had an ENT appointment in the afternoon at a hearing clinic nearby.
Isaac started playing peep-boo with the empty plastic plates they had at the clinic, then he decided to play it with one that was smeared all over with jam! He was absolutely covered, his forehead, cheeks and chin - a little even went in his mouth. The SLT thought it was so great she got the camera. We left the jam on as all the books advise (often children who don't eat have problems with sensory awareness and its good for them to be allowed to be messy) until he needed to sit up for morning tea and I thought he would make everything very sticky.
Unfortunately as we wiped the jam off it looked like it was still there - I don't know whether he was allergic to it, or whether it was the fruit acid, but his skin was very red and marked for a few hours.
We decided that Lily would pay to see the ENT surgeon privately, she has quite a lot of money saved from her benefit and it would be months if we waited on the usual hospital list now that she's an adult - in the end it was only $110 so not much more than a GP appointment.
Lily has had pain and funny noises in her ears for a few months now, which seem to be getting worse and she is noticeably deafer.
The doctor said that her middle ear looked good, so no glue ear or need for grommets, and he thought the pain might be due to grinding or clenching her teeth - he gave her permission to start swimming again, so that was good too.
But when he did the audiogram (must be a private clinic when you have the consultant doing the audiogram) it showed she was much deafer than her previous audiogram. I was watching and thought the line looked a bit low, then realised it was when he interrupted the test to say to Lily "Even if you only just hear the noise you must push the button."
Afterwards he said it shows a moderate to severe deafness in both ears and he can't quite work out why - also why she can still decipher speech so well. So Lily has to have quite a few blood tests (Paul has brought some bottles and needles home from work and Noah and J are looking forward to watching him take the blood) and go back in two weeks and may need a short course of high dose steroids.
Noah's exciting news is that he got a ride in a police car. His class had been doing the DARE project that the police come in and do (about keeping safe and avoiding drugs, although I doubt if Noah understood any of it) and at the end he was picked for a ride. He went with his special needs teacher (who seemed quite excited too!) and they were allowed to sound the siren. When they got back to the playground, all the school kids gathered round and the policewoman let Noah say Hello to everyone over the car's loudspeaker.
Isaac started playing peep-boo with the empty plastic plates they had at the clinic, then he decided to play it with one that was smeared all over with jam! He was absolutely covered, his forehead, cheeks and chin - a little even went in his mouth. The SLT thought it was so great she got the camera. We left the jam on as all the books advise (often children who don't eat have problems with sensory awareness and its good for them to be allowed to be messy) until he needed to sit up for morning tea and I thought he would make everything very sticky.
Unfortunately as we wiped the jam off it looked like it was still there - I don't know whether he was allergic to it, or whether it was the fruit acid, but his skin was very red and marked for a few hours.
We decided that Lily would pay to see the ENT surgeon privately, she has quite a lot of money saved from her benefit and it would be months if we waited on the usual hospital list now that she's an adult - in the end it was only $110 so not much more than a GP appointment.
Lily has had pain and funny noises in her ears for a few months now, which seem to be getting worse and she is noticeably deafer.
The doctor said that her middle ear looked good, so no glue ear or need for grommets, and he thought the pain might be due to grinding or clenching her teeth - he gave her permission to start swimming again, so that was good too.
But when he did the audiogram (must be a private clinic when you have the consultant doing the audiogram) it showed she was much deafer than her previous audiogram. I was watching and thought the line looked a bit low, then realised it was when he interrupted the test to say to Lily "Even if you only just hear the noise you must push the button."
Afterwards he said it shows a moderate to severe deafness in both ears and he can't quite work out why - also why she can still decipher speech so well. So Lily has to have quite a few blood tests (Paul has brought some bottles and needles home from work and Noah and J are looking forward to watching him take the blood) and go back in two weeks and may need a short course of high dose steroids.
Noah's exciting news is that he got a ride in a police car. His class had been doing the DARE project that the police come in and do (about keeping safe and avoiding drugs, although I doubt if Noah understood any of it) and at the end he was picked for a ride. He went with his special needs teacher (who seemed quite excited too!) and they were allowed to sound the siren. When they got back to the playground, all the school kids gathered round and the policewoman let Noah say Hello to everyone over the car's loudspeaker.
Wednesday, August 6, 2008
Tea for two
A most unusual thing in our house last night- just two of us for tea, me and Noah. Paul was doing a clinic in Gisborne, Lily and J were both in a show at their drama group and Isaac of course doesn't eat.
We also made some crispie bars together - we currently have 16 bags of marshmallows as Hannah's flatmate works at a food warehouse and for some reason these marshmallows didn't make it to McDonalds for their hot chocolate. We are already getting a bit sick of crispie bars so if anyone knows any other recipes using marshmallows please let me know.
It was fun having time with just Noah - I bought a floor puzzle with 48 pieces that has dinosaurs all over it. His interest in dinosaurs is still going and he knows the names of loads of them - although sometimes he calls them by the text of his book "How do dinosaurs say goodnight. " This is a beautiful picture book showing a human mum and dad putting their tribe of dinosaurs to bed and all the tricks the little ones play to avoid bedtime So when we asked Noah what a triceratops was he said its "Does he up and demand a piggyback ride" http://www.amazon.co.uk/gp/product/images/0007137281/sr=1-3/qid=1218009036/ref=dp_otherviews_4?ie=UTF8&s=books&img=4&qid=1218009036&sr=1-3
We also made some crispie bars together - we currently have 16 bags of marshmallows as Hannah's flatmate works at a food warehouse and for some reason these marshmallows didn't make it to McDonalds for their hot chocolate. We are already getting a bit sick of crispie bars so if anyone knows any other recipes using marshmallows please let me know.
Monday, August 4, 2008
School ball photos
Saturday, August 2, 2008
House site preparation in the wet
On a wet Saturday morning (when isn't it wet at the moment?) we decided to cheer ourselves up by taking photos of ourselves by our house site. Most of the stuff we're hearing about the house is how much extra each thing we want will cost, like insulation under the concrete blocks or changing doors in the downstairs bathroom to sliding ones which then means an extra fan to stop them getting wet and warping.
From the house we went to the plumbing shop to look at taps - I had no idea there was such a selection and as always I can pick out the most expensive with great ease! Lily and I then went on a pre-ball shopping expedition and were very pleased as all in one morning, we managed to get Lily's hair cut, buy her some sandals that fitted and she can walk in, and buy her a little black jacket that will also go with other clothes as well as her flower girl dress.
To celebrate this Lily brought me lunch at the Mao bar (one of Palmy's nicest coffee shops) and Lily packed away an enormous full breakfast and some of my chicken curry. I tried using my camera on my new phone and sending the photo of Lily to Hannah's phone but I'm not sure if it worked.
Lily has the same "Simple" phone that I had and like mine hers has come to the end of its life and not all the buttons work. She wanted a new phone with a camera so she can take some photos at the school ball tonight. We were lucky to find one in the sale at the "Warehouse" so now she has a lovely deep pink phone and no doubt will master the technology faster than me!
Isaac continues to climb on everything he can find. Here he is stuck on an empty cardboard box, very pleased with himself!
From the house we went to the plumbing shop to look at taps - I had no idea there was such a selection and as always I can pick out the most expensive with great ease! Lily and I then went on a pre-ball shopping expedition and were very pleased as all in one morning, we managed to get Lily's hair cut, buy her some sandals that fitted and she can walk in, and buy her a little black jacket that will also go with other clothes as well as her flower girl dress.
To celebrate this Lily brought me lunch at the Mao bar (one of Palmy's nicest coffee shops) and Lily packed away an enormous full breakfast and some of my chicken curry. I tried using my camera on my new phone and sending the photo of Lily to Hannah's phone but I'm not sure if it worked.
Lily has the same "Simple" phone that I had and like mine hers has come to the end of its life and not all the buttons work. She wanted a new phone with a camera so she can take some photos at the school ball tonight. We were lucky to find one in the sale at the "Warehouse" so now she has a lovely deep pink phone and no doubt will master the technology faster than me!
Isaac continues to climb on everything he can find. Here he is stuck on an empty cardboard box, very pleased with himself!
Friday, August 1, 2008
Wetter and wetter
The wet weather has gradually got worse and worse – apparently the worst storms for 10 years round here or 50 years in some other parts of New Zealand. It hasn’t been too bad at home – I’ve had J off school sick for 3 days so couldn’t have gone out anyway even if the rain had stopped. We had one small bush blow over and two of our garden chairs blew around the garden for a while, but nearby a lot of trees have blown over ad roofs been blown off. Beth in Auckland was without power for a while. This is also the week that they've started preparing our site for building. it was pretty wet for doing it, but they have some wooden pegs in now and an orange security fence across the front.
Yesterday, J went back to school so I went shopping and to the library and Paul managed to meet me for lunch.
My mobile phone has been playing up so I went into the Vodafone shop to see what to do about it. The girl was not terribly helpful but said no new batteries are available for the phone as the phone itself has been discontinued – I guess there are not many people like me who buy a “Simple” phone because they are not very technology literate. She also kindly told me that I will find it very difficult to use a new phone as they work very differently to the “Simple” phone.
I spent last night reading the websites that review and compare phones and decided that I want one with a reasonable camera on it as otherwise I have so many missed photo opportunities with the kids. This morning I bought a Sony Ericson 800i which is charging now and I’m about to go and read the handbook to see if there’s any hope of me learning to use it!
Yesterday, J went back to school so I went shopping and to the library and Paul managed to meet me for lunch.
My mobile phone has been playing up so I went into the Vodafone shop to see what to do about it. The girl was not terribly helpful but said no new batteries are available for the phone as the phone itself has been discontinued – I guess there are not many people like me who buy a “Simple” phone because they are not very technology literate. She also kindly told me that I will find it very difficult to use a new phone as they work very differently to the “Simple” phone.
I spent last night reading the websites that review and compare phones and decided that I want one with a reasonable camera on it as otherwise I have so many missed photo opportunities with the kids. This morning I bought a Sony Ericson 800i which is charging now and I’m about to go and read the handbook to see if there’s any hope of me learning to use it!
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