Saturday, February 27, 2010

Quiet life for us

We are so enjoying being back in the school routine and having life fairly quiet for us. I even phoned the social worker the other day to say our life was so settled that we would welcome another foster child!
Still the usual stresses of life apply.... Isaac poohed on the carpet as I was getting hm ready for the bath - I thought if I grabbed him quick enough I might get him onto the toilet in time, but this only ended up with me standing and almost slipping in the pooh and spreading it much much further... We finally found Noah's library book that I had had to renew three times as it had disappeared, then today as we went to take it back to the library, it had gone again and Noah said he took it to school yesterday to give to his teacher ..... I told Noah I would start counting how many times he says "no" I got to seven in the first five minutes then gave up...... Lily came home two hours late from her usual Wednesday swimming and gym visit, she had met a friend at the pool and honestly did not realise she had been in the water for three hours!
This afternoon we looked after two boys from a family we know from church for four hours, they have different disabilities to our boys - FASD and cochlear implant. We went out to the park and it was interesting to see how much more communication was possible because they can talk well but also how much faster than Noah the younger boy could get wound up - strategies to get him to co-operate again seemed to work better than with Noah though - mind you he was on his best behaviour.
This is also one of the few times I've been aware of people looking at us, as we went into the park cafe with four slightly different kind of children. Paul didn't notice anything though - perhaps men have a thicker skin.

We've heard from our older kids about new jobs. Joe in Korea finishes his current English teaching job on March 20th but has found another one starting April 1st so won't come back to NZ (if Paul gets a big American investment to inronline Joe will resign there and come back here or to the states as a software developer ) Anika, Sam's wife, has got a job absolutely suited to her masters in business psychology, she will work for a recruitment company assessing the suitability of candidates for jobs in big firms - this has been only the second job advertised in over a year so maybe it means the recession is coming to an end.
Beth is still looking for a law job in Sydney, various people including my brother Jon are looking out for anything suitable so hopefully she'll find something soon - they are moving there in April.

Wednesday, February 24, 2010

I Spy

We seem to have shaken off all our bugs now - walking yesterday for an hour and a half to get to Isaac's dietician appointment at the hospital was the make or break point for me!
Noah is still having a few behaviour issues as he settles back to school with a new teacher, new special needs teacher, new class and routine. He's often defiant each step of the way with usual routines at home.
I decided to follow the excellent idea I saw in the thoughts preserved blog (about bringing up children with fetal alcohol spectrum disorders) and made Noah a numbered chart for getting ready in the morning. Usually he goes downstairs in the morning before getting dressed and then is impossible to get back upstairs to do anything. Now going downstairs is step 6, after 1. wake up, 2. say hello mum and dad, 3. get dressed, 4 shoes on, 5. brush teeth.

So it was this morning that I awake to step 2, Noah in bed with us playing I-spy with Paul. Fairly simple to follow at first "something beginning with M" - "mum","something beginning with D" - "dad","something beginning with N" - "Noah",
Then Noah the Aladdin fan with poor speech production tried again "something beginning with D". This time it wasn't dad, door or anything else Paul could think of. In the end he gave in and Noah told him it was Genie (Deenie as he says it)!

Noah kept to his chart really well and even took his antibiotics without trouble. I did get cross with him though because he had been up in the night (Paul found him downstairs at about 4am) and because I'd forgotten to lock the computer it now had lots of stuff open and messages warning that important parts shouldn't be deleted. Then the satellite programmes channel was just grey on the TV and when I finally got it working it seemed to have lost all channels between 36 and 136. Isaac's essential number 45 is playhouse Disney!

It was only when I got back from taking Noah to school that Hannah explained that all the TV channels in the 30's are sports channels and they've now added more so jump to 130's but if you keep going upwards you get back to the 40's again. This is something that even Noah couldn't have caused so I'd better apologise to him tonight!

Monday, February 22, 2010

me too

and of course I got sick too. Luckily more of a flu-type headache and dizziness rather than vomiting, but I spent yesterday in bed (luckily Paul stayed well) and have forced myself out of bed this morning to get the boys to school and kindy. I have to meet Noah's therapist (who visits once a term from Australia) at school this morning and presently Noah is refusing to take his antibiotics (already one whole dose over all his clothes and sitting missing his breakfast for over half an hour). What a start to the week - it can only get better!

Saturday, February 20, 2010

more illness

Noah had been improving on his antibiotics and constant re-dressing of his nasty abscess. Then we woke in the night to sounds of him vomiting.
He is now going round the house with an ice-cream tub still making horrible noises and bringing up bile. Issac looks a bit pale too and each time Noah makes a noise he copies it. I think there were some genuine noises from him in the night too. He can't actually vomit because of his fundoplication which probably makes him feel still worse and of course we can't even vent him through his gastrostomy now.
Hannah has just informed me that she now has the bug too. This reminds me of the time in October 08 when Isaac and Beth had just had surgery and a D & V bug ran through the family.

I had arranged to have my hair done today so have to leave Paul with these sick people - a reminder yet again of how fragile the health of our kids with DS is. Noah has no colon (because he had Hirschsprung's disease as a new-born) so he can dehydrate extremely fast. Isaac doesn't drink so if he's off his food he too can dehydrate really fast.
And to think that on Wednesday morning I was thinking how sorted my life was and how I would welcome another foster child now!

Wednesday, February 17, 2010

Isaac doing well, Noah and Lily not so good

Lily went off to catch the bus to work this morning after a long telling-off from me for yet again not bothering to unload the dishwasher ( her chore which it has been for ages and which she is supposed to do every morning before even eating breakfast) and for not bothering to comb her hair after her night time bath so that it stuck up everywhere. I have to keep reminding myself how lucky I am that she is fairly independent and able to help with housework and bath herself.
A friend was passing as I returned from taking Noah to school and told me she'd just seen Lily outside our house being picked up by her supported employment supervisor - she had missed her bus and obviously decided not to call me as I'd already shouted at her.
The bus timetable had changed today with very little publicity and certainly not enough for Lily to be aware of it. This meant Lily had missed the bus - it had sailed past her on the other side of the road at an earlier time than usual (You might have expected the bus driver to notice and stop for her - after all she has been catching the bus three mornings a week for over a year so you'd expect him to recognise her)
Then at lunch time Lily was unexpectedly returned home by her supervisor who said that Lily had hardly been able to work as she was so tired - Lily said she didn't get much sleep last night because once we'd gone to bed she had got up to search for Harry Potter on the computer and then played the Harry Potter game on her playstation until late (Lily has no idea of time so it may have been very very late).
I have now removed the wires that connect the playstation to her monitor and she slept all afternoon appeared for tea saying she felt sick and her tummy hurt (I wasn't very sympathetic as she has ignored everything I've suggested she do to prevent her constant constipation) then went to bed straight after tea.

Noah meanwhile has developed lots of nasty spots on his legs. We thought at first they were insect bites with the worst one maybe being a white tail spider bite, but they got worse through out the day at school. I'm pretty sure they are a staph infection probably as a follow on from the infection he had in his foot. We had staph run through he family before - Lily very easily gets boils, I got horrible pus filled blisters and Paul had spots from shaving. It took months of anti-biotics and anti-septics to get rid of it.
Noah could hardly walk with the nasty spot on his leg, so I gave him some of the antibiotic left from his foot (until I can get a new prescription tomorrow) and put him in a hot bath with some of Lily's chlorhexidine wash. He made a lot of fuss as we washed his legs really well and luckily the main spot burst by itself.
Luckily Paul hadn't returned the first aid kit he was given to use as the first-aider at Special Olympics, so I was able to dig out some dressings for Noah's leg.
Noah is tucked up in bed now, still a bit miserable insisting that there is a "very sharp pineapple" in his leg! (I think this is a description of how it hurts)
Always, always, the kids get sick when Paul is away but tonight he's only in Wellington for the evening and should be back soon after midnight - he'll be amazed how much can happen in such a short time!

Isaac for a change is the healthiest of our trisomy tribe. He attended paediatric clinic and charmed everyone. He is back over 12kg again now and has grown 2cm since December. The paediatrician was very reassuring about how little fluid children really need - I had been worrying because if you search 'fluid requirements' on Google it says children need a litre a day for the first 10kg they weigh then a bit for each extra kilo - Isaac gets between 400 and 600ml a day all from his food none from drink.
Isaac has finally been discharged from the home care team (the nurses who for the past four and a half years visited our house and weighed him, monitored his SATS did any dressings, provided medical equipment and reassured me!) WELL DONE ISAAC!!

Monday, February 15, 2010

Hannah's party

Sam and Anika went to a wedding in Hawke's Bay on Friday and continued on to Palmerston for the weekend. They stayed with Anika's family but Sam spent Saturday afternoon and evening here playing with our boys and even bathed them for us while Paul and I went to the supermarket for supplies for Hannah's party.
Anika has an interview for a job in her field of business psychology recruitment - this comes after a year of no available jobs and having to work in a shop so she is delighted.
James has also heard that after a year of no work he has been accepted by Macquarie university Sydney to do a masters and possibly PhD in ancient history. He's delighted and Beth has stated looking for a law job there. They may be able to wait till next semester to move.

Noah and Isaac put on their best clothes for Hannah's party - I found Isaac a little blazer at savemart (a kind of second hand supermarket) and Noah has his Ralph Lauren suit from trade me.
Once Noah was dressed he decided to crawl into the red barrel we bought to improve the boys sensory problems. Normally he won't go near it, there must be something about wearing dry-clean only clothes that makes getting dirty irresistible!

Hannah had made some beautiful cupcakes and she roped Paul into making some cucumber sandwiches - he took over from me because he insisted that the touch of vinegar and mayonnaise I planned to use would ruin them!
Some of her friends had made cupcakes too. We think the cookie monsters won the day!

Meanwhile I've been introduced to the blog by a fantastic photographer who has just unexpectedly given birth to a little girl with Down syndrome. She writes very well and the photos are just wonderful.

Thursday, February 11, 2010

Buying Hannah a car

Hannah passed her driving test the other day and I immediately bought her a bead (for her charm bracelet) in the shape of a car this means I can say "Hannah passed her test so I bought her a car!"
She is a very good saleswoman though - I went into the jewellery shop where she works to buy the bead and she managed to sell me an extra three beads for my necklace!
She is now finding all sorts of reasons why she needs to go out driving and Noah has been very pleased when she's given him a lift home from school.
This Sunday afternoon she is having a late birthday party - it's going to be an old fashioned tea party with cup cakes and tea in china cups. She has had great fun going round the second hand shops with her friends and picking up tea cups for ridiculously cheap prices. I've told her we don't want thirty mismatched china cups and saucers remaining in our house after the party so she's going to give them to the guests as going away presents!
Hannah now has her own blog too.

Saturday, February 6, 2010

Get well Noah

Noah was absolutely delighted to get a card from big sister Beth with Get well wishes for his foot and a copy of the DVD of monsters inc. Just in case we didn't already know all the words by heart (from the dvd that eventually broke from long use) we now have it playing constantly to help us remember. So far he hasn't watched it through backwards though, which he did do with the Aladdin dvd ( I admit all I noticed was that there was no sound and when I asked Noah it was him who told me it was because the whole show was being played backwards - I am used to him watching it in foreign languages but this is a new way of spoiling a show!!)

Noah has had more issues with his foot so the get well card was great. He went to have it dressed twice and because there was still so much pus ended up having an X-Ray and ultrasound of it. He was very excited about this, but luckily no foreign body was seen and his foot is now healing well.

Noah is supposed to be getting more independent at school now and going straight to his mainstream classroom rather than having his buddies meet him at the special needs classroom and escort him. By Day 2 we had lost his hat, his shoes and all his workbooks!

We forgot that Isaac's kindy term actually started before Noah's school and got a call on Tuesday afternoon asking where Isaac was - hard to pretend then that we'd spent a lot of time preparing him for his return to kindy. When Isaac first met his helper again he was first very excited then totally overwhelmed and lay flat on the floor hiding his head. Luckily by the time we collected him he was enjoying kindy again. He had been in time out though for hitting another child. Good Luck to them helping Issac to learn from "time out."

Tuesday, February 2, 2010

Last day of holidays

Noah seems to have finally settled into the holidays now. His days mainly consist of watching the Aladdin dvd (his current obsession) and lying on the sofa - I think he is a teenager in training.
We have been counting down with him for a while the number of days till school start and yesterday when the count was two, we went to buy school stationery and noticed that Noah was limping badly. He has a major pus filled lesion on the ball of his foot underneath his big toe - we think he may have stood on some glass a week ago when he was out kite flying with Hannah.
He usually loves going swimming and just last week learnt to swim under water for short distances, but yesterday he didn't even enjoy walking around the pool.
We were going to let Noah choose fun things today for his last day of holidays, but instead ended up at City Doctors so he could have the pus excised from his foot.
We warned him what was likely to happen and he started by saying how brave he was because when we went to Te Papa last week he went in the earthquake exhibit and stayed in the house that shakes (before he has always run out at the last minute). He managed to be brave for about half a minute but then said "but it does still hurt, it prickles" as tears rolled down his cheeks.
They got a bit of pus out but no glass and he now has a dressing on and is on antibiotics. I may not even be able to send him back to school tomorrow. What a great start to the school year!
Still we've said he can have lunch out as a treat. I hope we find something Isaac will eat too, he is looking quite good but I can't imagine he can survive on only 600ml of fluid a day for too long. Some days he seems to only eat three calciyums and a few cheese balls. We see the speech language therapist tomorrow and he will be weghed agian the week after so we'll have more idea about whether he is eating an adequate diet.