Christmas preparations

We had a thanksgiving meal last Friday (once we'd persuaded Lily it was more important than watching Shortland Street and making her leave her flat)and then started the Christmas decorating. It coincided with Hannah moving out into a flat so was very hectic. Bot now we have a relatively tidy and quiet house decorated for Christmas. Isaac is by our teddy bear Christmas tree that stands in the hall and Noah got to turn on the outside lights for the first time last night as it was December 1st (it doesn't get dark enough until nine o'clock in this NZ summer).

All eight kids will be here (along with four partners) for our Christmas meal this year, we will eat early evening, so Sam and Anika and Hannah and Thomas can spend lunch with their other families and Beth and James other family aren't having their celebration till Boxing Day when James' brother returns from Japan.

Noah finishes school on Thursday and has already had the graduation ceremony for his special needs unit. Isaac and I attended but Noah didn't - or at least he was the other side of a locked door into the gym, hidden away in the foyer. When I arrived his teacher said he had run off and as this is a fairly regular occurrence we decided to wait for him to turn up again. After an hour, the ceremony was in full swing but I was really worried, came home to see if he was there and was then ready to call the police. Finally a teacher aide and the school secretary found him sitting quietly in the unused foyer a bit sad that he had heard them singing but hadn't been able to take part in the song he'd practised but otherwise Ok. It still adds wrinkles to my face with each disappearing act though!

School holidays

The boys have just gone back to school but we now have a long w/e. We drove to  
Gisborne accompanying Paul to his clinic there and on Isaac's seventh birthday it was so warm we spent some time on the beach. At first Isaac just sat cross legged on the sand but eventually enjoyed splashing in the water while Noah spent over an hour burying sticks. We even got Paul on the beach after his clinic!

Miserable, full of cold, kids

My study is not going well this week as Hannah, Noah and Isaac are all sick. I have finally got Noah back to school today after three days off - we could tell he was recovering when we found him trying to open the bonnet of the car with some wires in the other hand! Isaac however is at the stage where he doesn't want me out of his sight but everything I do is wrong. He just asked for an ice-cream then immediately threw it on the floor, an improvement on yesterday I suppose, when I had to fight hard to get a grand total of just 250ml fluid in.
Paul is missing the fun by having three days away so this meant Isaac slept with me last night. "Slept" not altogether accurate, but I did get 4 hours of sleep in a row from 9.30 to 1.30.
Hannah is a bit sorry to be missing time from her social work placement in child protection but she only emerges from bed for a little while then goes back to sleep again. She has to get a doctor's certificate this afternoon, so hopefully they can decide whether or not she has a bacterial sinusitis following her viral infection.
Counting down the hours for Paul to be back (tonight) so I can sleep in Lily's empty bed downstairs, maybe take a walk by myself and have a little bit of quiet time to do some study. Then I'm assuming that over the w/e Paul and I'll get sick with the bug!

long overdue update

We had a great trip, just Paul an dI and Noah. Three nights in Singapore, overlooking the beach of Sentosa Island, going to the small 'Universal Studios" they have there. I was brave enough to go on the transformers ride and probably enjoyed it more than Noah, although he went on the very scary cyclon roller coaster which I didn't dare do. We had a lovely time in UK in spite of the weather (I kept saying it was no better than NZs winter only to return here and find that in fact it was much colder here!). We were so impressed with Liverpool (where Paul had a conference) it was just beautiful and Noah and I went on a "ferry cross the mersey" and raced round a wallace and Grommit in space exhibition - it said allow two hours but we'd finished in 40 minutes - the best bit being that we had the whole Wallace and Grommit gallery to ourselves as we were by far the first to reach it! Noah managed to set off a fire alarm at the Beatles exhibition by escaping through a fire exit and being with him all the time we saw just how impulsive and difficult his behaviors can be. It meant that once we were back we were happy to start him on the clonidine his new paediatrician suggested. This seems to be making a big difference - occasionally now if I ask Noah to do somethign he says "sure" rather than an immediate "no".
It was good seeing the parents again, and my sister and family as their holiday from NZ to Europe happened to coincide with ours.
It was a long flight back, especially as the radar broke down in Munich just as we were in a full plane about to begin a 12hour flight. We sat for over 3 hours on the plane before taking off, but luckily had a long stop over in Singapore with a good sleep in the transit hotel. It was lovely that Joe and Rachel met us at Auckland airport as we had over 3 hours there.
So now we're back to some kind of routine, The boys are in school and I am studying to take a medical multiple choice exam in Feb - the first step to registering as a doctor again.
Lily is lovign flatting. She rarely even wants to vist us now and had a very successful flat warming party last w/e.

life continues

I have just finished one of my massey exams, next one on Tues then I've finished my course!

Two days afterwards it's off to UK for Paul, Noah and I, having the holiday we missed over Xmas celebrating birthdays for Noah and me and attending a conference in Liverpool for Paul. Hannah is looking after Isaac her in NZ she volunteered after I foolishly said "It would be easier just to pay Isaac's fare to someone in NZ for caring for him rather than take him"
Lily seems to be enjoying flatting. They have a strict routine with menus and chores on a white board and she has someone to remind her to have showers etc. I worry about her getting cold but luckily the flat is well insulated and she sometimes remembers to wear a jumper!
Noah's school behaviour is a bit 'off' again. I got a phone call from his teacher who I think was trying to threaten him with "I'll phone your mum" and then had to follow through. Hopefully it's just because we're near the end of term and it will improve with some concentrated attention from Paul and I while on holiday.

Lily is going flatting

This Saturday Lily will start flatting with two friends who also have Down syndrome. She has no concerns at all in spite of being unable to remember the address of the house! (we are working hard on that) Paul and I have many concerns, but luckily the organisation that will support them is very helpful and keen to hear our ideas.
They will have helpers in from 7.00 to 8.30 am and 4.30 to 7.00 pm on Monday to Friday and a bit less at the w/e.
I said Lily could choose her own bedding for the first time (at the moment she has to have stuff I consider matches our colonial style house) so with her beautiful antique style sleigh bed she will have a black duvet cover and pillow case with pirates and skulls on it!!

Also this w/e Hannah and I are going to Sydney to visit Beth , James, Sam and Anika, leaving Paul with the boys. This was arranged before we knew the flatting dates and Paul is not best pleased!

Everyone is doing well. Noah has an IEP and I knew they truly understood him when for his goal of reading and understanding his time table they said "partially achieved" he can read the time table, but does not always choose to obey it!!

school holidays

We are now reaching the end of a relaxing two weeks of holiday. The two boys and I accompanied Paul to his two day clinic in New Plymouth and even though I was initialled concerned about how we would fill the time between needing to leave the motel at 10am and Paul's clinic finishing at 3pm we coped well, spending well over half an hour at the tourist information place where Noah played on the interactive map and Isaac watched the 12 screen TV. We also went to see the Lorax at the movies and Isaac behaved relatively well and was luckily surrounded by many young children not behaving much better. I said I would practice driving on the way back and drove from Egmont village to Inglewood (possibly 2% of the journey) not exactly sharing the driving! In Inglewood a lady opened the toy museum for us that was supposed to have closed (this is why I like NZ) very interestign to see how they made lead model cars in atiny cottage industry based on the toys the owners kids liked.
Back to school tomorrow and I am hoping I cleared out Isaac's lunch box at the end of last term and will not find it going mouldy in his school bag tomorrow morning!

further relaxation

You can tell life is more uneventful as yesterday I wanted to wear my favourite T-shirt (pink with 'it's a small world' logo from Disneyland) and I took it out the packed hospital bag! At the same time I took out Noah's two pairs of pyjamas, one of which was bought specially for his last hospital trip. I think the new definition of whether or not a child has a significant medical condition should be whether or not parents have a packed hospital bag ready to go!
I have two Massey assignments to do over the holidays, one is a task based job analysis of Paul's work (I chose him as he is the only person in full time employment I know well enough to interview) this is quite hard as a lot of the tasks he does as a consulatant are 'thinking' or 'adapting' so hard to describe. I also have to do a literature review for somethign that's been in the news and is related to abnormal psychology. I decded to choose PANDAS (those of you who know me from long back will remember the PANDAS project of 2000 when I was involved in trying to get a Palmerston North development assessment and support centre for preschoolers with special needs, so I thought the title was apt) paediatric autoimmune neuropsychiatric disorder related to group A streptococcus, this should hopefully up my medical knowledge of immunology and microbiology too. Its an interestign disorder (if it really exists) where after a throat infection children develop sudden onset OCD and tics. I am pulling out news reports from New York where multiple teenagers in one school developed tics and some parents insisted it was PANDAS not mass hysteria and got Erin Brokovitch in to look for toxins (presumably not related to sore throat).

Happy Easter

Although I hardly dare say it life has been fairly peaceful and uneventful (and long may it continue). The Massey uni break coincides with the boys Easter break from school and Paul has been off all four days of the Easter holiday, we went to see the Dr Seuss art exhibition on Saturday and today we went for a long walk - Isaac walked a lot of it and is now absolutely exhausted.

Easter itself seemed very quiet as we had no extra family members here - Sam and Anika have now moved to Sydney where they will be flatting with Beth and James. They have just found a lovely house to share. Hannah and I are going to visit at the beginning of June and are already quite excited.

Isaac is suddenly making progress with his speech which is amazing after so many years of plateauing - he tries to copy everything we say (especially whatever Noah does or says). In the esplanade today he repeated the same word four times until I eventually understood he could hear the little train and was saying 'train'.

Noah is trying to write a bit which is also good as he used to hate even holding a pencil. He came to ask Paul how to spell a word as he was writing down the names of some of Lily's songs. I heard Paul first spell 'birthday' then when Noah said that was wrong 'version' finally Noah told us it was a song by Madonna - I think I'd prefer him to sing"like a birthday' than"Like a virgin"!

Salami warning

Being in New Zealand , the kids learn at school what to do in event of a volcano eruption, earthquake or tsunami. It tickled us though when Noah came home from school yesterday and told us he had been taught what to do if there is a 'salami'!

World Down Syndrome Day party

March 21st is World DS day - the 21st day of the third moth standing for the 3 copies of chromosome 21. It is also the anniversary of Paul and I getting engaged, Paul very romantically chose the first day of spring (as it is in the northern hemisphere) as he liked the song "If I ruled the world every day would be the first day of spring." We got engaged 34 years ago.
Yesterday the zone 21 youth group here put on a party for all the families who have a child with DS in Palmerston. People had to wear orange and purple which are the colours of the NZDSA. It started at 6pm and Noah and Isaac lasted over an hour before Isaac nearly fell asleep and Noah's behaviour deteriorated and he punched Hannah.
We can tell things are returning to normal by the way Noah is no longer so well behaved - I think when he was sick he was really quite afraid and felt the need to behave so we would look after him (and perhaps didn't have the energy for many exploits).
He is back to saying (or shouting) "NO" to those demands which mean a quick change of activity or leaving his Ipad, and got into trouble at school for being uncooperative like this to his drama teacher - he had just returned from an out-patient visit and abdominal X-Ray so his was pretty disrupted with presumably a few bad memories.
Obviously the whole time of being sick has had a major impact on him and the other day when Lily said she had nightmares about were-wolves Noah said "I had a nightmare that my stoma had come out and wouldn't go back in". He often asks where 'Oswald and Epic' (his pet names for his stomas) are now. I told him they are back inside where they belong and he said "Does that mean I am pregnant with Epic and Oswald?"
He was also obviously a bit upset about his rectal prolapse and tells us to be careful when we do his washouts, he is scared to push very hard when on the toilet now in case 'the phantom blot' reappears - you need to know the wii game 'Epic Mickey' to understand his naming of his prolapses!

suitable birthday gift for Lily's friend

When we were in Wellington hospital and soon afterwards we were not monitoring Lily's money and were shocked to discover that in one weekend she had taken out $240 on Friday, Saturday and Monday and could only account for about $200 of the $720. She may have left money in the machine, given it to a beggar or her friends or dropped it but she just has no idea. Anyway since then we have been tightly monitoring her money so I was involved in getting a birthday present for her friend - a guy with DS turning 23. I asked her what she thought he'd like - when it became apparent that she had no idea of his favourite foods or music (even though she spends each Monday afternoon with him) In the end I asked her what she thought he liked doing as we could get him something related to that. After some thought she said we could maybe buy him a magazine of naked ladies as he keeps one in his bedroom and loves to look at it!
I did consider this but got a T-shirt instead!

a week with Rachel

Rachel is trying to sort out her newly independent life following her break-up with Adam her partner of 6 years. She has been living in Auckland with Adam's mum while Adam lives in Queenstown but this is obviously not sustainable. This week she managed to get a lift to Palmy to spend the week with us. It was not a good start when the hidden key I'd told her about was not there and she had to sit in the garden for 2 hours before anyone came home!!
Anyway we had a nice week and especially enjoyed this natural technique she has of keeping a tidy house around her and all her help with the boys. She let Noah use her lap top a bit until he tried to trace the route all the way from Palmerston to Auckland on Google street view!
Rachel did train as a nanny so she is vaguely wondering about a live-in nanny job in Auckland or UK, but she also has some interviews for receptionist jobs.
Paul had a busy week with Wednesday in Hawera, Thursday in Christchurch and Friday in Sydney. He managed to do Sydney and back in a day - leave Christchurch airport at 7am and get back to Auckland at midnight - and his meeting there was just at an airport hotel so he did not get to see Beth.
However Beth will be in Auckland next weekend as she is being the sponsor (not sure if that's the right word) when her friend Gracie is admitted to the bar. Hopefully Joe, Sam< Beth and Rachel will all meet up and celebrate Joe's 30th birthday which was on Friday. We can;t go as Hannah is bridesmaid at another wedding which we've all been invited to.
Noah is doing pretty well, although we should possible take out shares in 'pull-ups' and 'brolly-sheets' - one of my least pleasant experiences of the week was sniffing a brolly sheet to see is it belonged on the clean or dirty washing pile! He has an outpatient surgery appointment and X-Ray booked in Palmy this week and I thought we'd go if only so that news of his Wellington surgery gets documented in his Palmy notes.
Paul wants me to write that he has launched a medical app which made it to the top ten charts for apple medical apps in certain countries (for example having two downloads in Ecuador puts you in the top ten there). It is free and about dosing dabigitran so I have no idea why any readers of my blog would be interested!! but the link is here. He had a letter published in the New England Journal of Medicine and some of the follow up to that mentioned his app so he has now had over a thousand downloads.
Joe is not that impressed as his games just click red and goo up are bringing him in some money as opposed to fame.

relaxing but a hiccup

Noah has finally got back to school and I have had two lectures at Massey and can feel my stress levels dropping (and the eczema on my legs slowly healing).
I had to give the school quite a lot of instructions about Noah's toileting including the fact that he gets a severe 'nappy rash like' skin condition if not carefully wiped with wet wipes and having thick cream applied (thanks Beth for sending all the calmoseptine cream you found in Sydney as it's not available in NZ) I wonder what the regulations are about having teacher aides go this close to a child's butt - I'm sure it wouldn't be allowed in UK and I am pleased we no longer have to discuss behaviour like this with social workers as we have allowed our foster care approval to lapse.
I felt relaxed enough that I decided to finalise arrangements for the holiday we had booked even before any of this happened in December - Paul is going to a conference in Liverpool and as this coincides with Noah's 13th birthday and the end of exams for me we decided to accompany him and then go on to see relatives in North Wales. Hannah will look after Isaac for us in NZ.
We have now booked the Rasa Sentosa resort for 3 days on the way out, Staybridge suites in Liverpool for the conference and the beach house in Prestatyn from 30th June to July 6th when we fly back to NZ.

Should have known this was a little overoptimistic for no sooner had cheques been written and credit card details posted then Noah had a prolapsed rectum.
Paul was giving him a bowel washout (330ml saline as an enema) and as Noah then sat on the toilet he said "Oswald is back" _Oswald was the naughty prolapsing ileostomy stoma.
About 6cm of rectum had prolapsed which Paul was luckily able to easily reduce, but we will now have to email the surgeon again and presumably avoid enemas. At least we know the botox will wear off with time and not allow his rectum to just drop out!

I am not looking forward to having to tell his teacher aides about this issue they may have!

Recovery and moan about hospital experience

Noah seems to be almost back to normal - just a little more pale and tired than usual. I am shattered though and have just one weekend to recover before Massey term starts.
I can only describe the hospital experience as being on a never ending long international flight - that whole feeling of inadequate sleep, not knowing what time of day it is and eating snack food at odd intervals.
The first three nights we were on the six bedded ward so shared the germs of at least 20 people (patients and carers with a very quick turnover) by the second day we were the longest stayers on that ward - I think that is where I picked up a cold that I didn't have any time to nurse - still the dry air in the hospital stopped my nose running.
In this bit of the ward had to change Noah's ileostomy bags on his bed (as the treatment room was usually busy) without easy access to water - only one sink on the unit and not by our bed- and without the help of any nurses who I think knew nothing about ileostomies (because the more experienced nurses were with the monitored children). We then had to walk him quiet a long way to the children's toilets each time we wanted to empty the bags and this included three times over night once he was on bowel prep
They were so pressed for beds as two wards were combined into one that they were suggesting pre-op kids and those with broken arms go home overnight then return at 8am. Those without drips or monitors slept in the outpatient day ward and returned to the ward during the day.
One advantage of Noah having fentanyl post-op was that he needed a monitor so we got a single room opposite the nurses station. We had a few nurses pop in the first night as they turned his monitor outwards so all the nurses going past could see it and his respiratory rate dropped to 9 and pulse to 59 his oxygen sats stayed in the 90s though - I think they were grateful when he was weaned from the fentanyl. The anaesthetist had also put in a spinal block which lasted about 24hours and stopped the pain from his extremely bruised anus - it was painful just to look at!
While we welcomed the nurses interventions over the first few night it became an intrusion on the final night when Noah was woken at 1am to be given panadol and then I was woken from my pretend sleep "Noah's mum" (you don't have a name in hospital) "How do we get him to take his panadol?"
He was woken again at 6am as this is the time they take the daily temperature.
The nurses were so so busy, it was really only on one quiet day that they had any time to spend just chatting and then it was obvious they hated the two wards in one as much as the parents did.
I have to say we have not usually had such a bad experience in Wellington and that it wasn't helped by the horrible half-way house type hostel that we had to sleep in while Ronald McDonald house was being rebuilt.
It was much better when we decided to pay for a motel (on the days it had spare rooms) as we hadn't been away on holiday this year anyway. Then whoever had slept on the ward could come back there for a shower and breakfast while the other more awake one went over to the ward for the early morning ward round.
Staying on Palmerston North children's ward now seems positively luxurious in comparison to Wellington.
In spite of my moans - getting Noah well was what we wanted and we seem to be there for now.

We are home!

Absolutely exhausted - Paul and I even more so than Noah, but so grateful to be home.
No ileostomy, just a blue dressing with no idea whats underneath - the nurses have no idea either but just said don't take the dressing off yet - will it be staples, stitches or dissolvable stiches?
We did however take off the cling-film like wrap that has been on Noah's scrotum and the three stickers for the heart monitor that the nurses said they like to leave on until the patient goes home as the patinet may complain when they're removed.
They were right about the complaining - Noah is doing plenty of screaming at us and everythign which is one way of telling he's gettign better.
This morning he lay in his hospital bed shouting "I hate the world" he threw his shoes, the pillows and shouted at me to get out then to come back.
He made a very fast recovery yesterday, from lunchtime still having nasogastric aspirates and needing fentanyl (an opiate) for pain to the evening drinking 4 boxes of flavoured milk and walking upstairs to the Ronald McDonald family room then back down the fire escape. He had had no exercise or food for a week yet just bounced back.
We have him wearign pull-ups all the time but he has mostly got to the toilet on time. Although running back from X-ray this afternoon was perhaps not a good idea and then realising the X-Ray technician had tied up the waistband of his board shorts which he coudln't undo made the mess even worse.
Still we are now the proud possesors of many varied ways of washing out a child's rectum (and will have a legitamate use of the drip stand we still have around from Isaac's tube feedign days to hold teh enema mix) so hopefully can get bowel issues sorted in time.
I think the next few days will show us just what levels of exhaustion adn stress we hav ebeen under, but at least Paul still has 2 days of holiday to go.

Noah getting better

Today Noah managed to walk to the toilet and walk down the ward to see his old room. He also had an ice-block. I can tell he is getting better, he got very frustrated with the iPad and had a bit of a tantrum about his NG tube up his nose.
"I hate this tube, take it out today. Aahgaah etc etc. ".
Hopefully it will be taken out tomorrow.

On the positive side. I had a great sleep last night!!

Day 2 post op

Noah is doing well. He had a bit of pain overnight and needed more Fentanyl, but he is quite lively this morning. No pain and no nausea. He has still got a few tubes and wires. Hopefully some can be removed today.
His parents on the other hand are a bit exhausted. Probably had enough of hospital. From tonight we have a motel room with a kingside bed and hot shower. My turn (Paul ) to sleep there tonight. Can't wait

Noah after surgery

Out of surgery

Noah has come back from surgery. All went well. His stoma had been repaired. He is still very sleepy and has several tubes. The fentanyl seems to be a good pain killer. Noah tried to sing to us. As he has to be monitored a bit more we now have a single room!