Thursday, May 21, 2009

Isaac and the phone

This is our lovely Isaac wearing some orange dungarees that were Noah's. These are the first of Noah's cast offs that I've kept for him - we got rid of all Noah's baby clothes never thinking we'd have another child as I was 42 and we hadn't then even dreamt we'd adopt again.

Yesterday morning I couldn't find our upstairs phone and remembered I'd seen Isaac playing with it earlier (he often points it at the TV hoping to change channels)
I pressed the button on it's stand and traced the noise to the bath in the children's bathroom.

Later on in the day, I didn't even notice the phone was missing, but as I went to use the toilet realised there was something in it (luckily before not after using the toilet) and recovered a very wet phone with a tide mark on the screen.

Now our aga is supposed to be good at everything - you can even revive half-dead newborn lambs in the warming oven, but unfortunately it does not seem able to revive wet phones!!

More news of Isaac from today's paediatric appointment; he's being booked in for an EEG as the funny eye movements he does could well be absence seizures. He's also starting on Losec again to see if that will help his tummy pain and maybe the skin round his button. We've been given some free samples of creams to try around his button to try to help the redness too.
Also the best news of all, he has put on one whole kilogram and weighs 12kg - maybe the new high calorie formula of nutrini is helping!

Monday, May 18, 2009

Monsters vs aliens cast by Noah

We had a lovely lazy weekend. As Paul was going to a conference in Australia for the w/e and we are having so many issues with J, we asked if she could go for respite and it was granted! So from leaving for school on Friday morning until Sunday evening I didn't see J and instead could concentrate on Noah.
On Friday night we watched Pinocchio (saying it will help him understand the Pinocchio ride when we go to Disneyland in August)and ate popcorn and take-away pizza.

On Saturday we caught the bus into town, had breakfast at McDonalds and then went to see Monsters vs Aliens. There were only 3 families in the cinema so I didn't have to worry about any noise Isaac made. Noah has seen the movie before and has cast all our family as different characters.
He is the monster BOB, who is basically a blob of blue jelly. Unfortunately BOB says "I haven't got a brain" and Noah has taken to saying this too, which I don't think sits well with having Down syndrome.
The beautiful heroine (which both I and Hannah wanted to be) role has gone to Lily.
Hannah is the "Missing Link" Isaac is the rocket ship J is doctor cockroach, and Paul is the giant robot.

I am insectasourus, a monster that saves the day by becoming a butterfly and rescuing the monsters on its back - I was thinking I might be quite a beautiful character, but no, insectasourous is a big fat hairy thing!
I don't know how Noah worked out which character was which family member but he will not swerve from them!
After the movie we went to the new cafe Chocolato which serves hot chocolate (made with real melted chocolate) and gelatos. It is like a tiny bit of San Francisco in Palmerston North.
We walked all the way home from town which meant Noah was nicely tired for the rest of the day.
Sunday it poured we rain all day so we barely left the house (I went out to buy the Sunday papers and in the short time I was away Isaac managed to pull on his button and get it bleeding again). Our trisomy tribe were so much more peaceful with J away, and it was lovely not to be asked all the time "What are we doing next?"
Usually I really miss Paul when he's away but luckily Boston Legal season 5 dvds arrived from amazon on Friday and even with watching every hour the kids were in bed, I haven't managed to watch all the episodes yet!

Thursday, May 14, 2009

Something or nothing

They called me from Isaac's Kindy to say he just wouldn't settle, kept pulling at his gastrostomy button and now it was leaking a brown fluid. His helper said she'd bring him home as we just live along the road and his pushchair was at Kindy.
I was in the middle of preparing a spaghetti bolagnase but decided to leave it and walk along to meet them.
I could hear Isaac from quite a way off as he was screaming so loudly, quite distraught. I picked him up and had a quick look at his button which was obviously leaking old blood which had stained his jumper and jeans.
A quick medical lesson now for those interested in gastrostomy buttons - Isaac has a button that looks like this (well actually not nice clean skin around it like in the photo, more red and inflamed) on his tummy,

If you were to look at it in cross section, you'd see it's held in place by an inflatable balloon and goes directly to the stomach through a tube that was created at an operation when he was 10 months old. The middle hole on the button is where the food goes in and the white port at the side is where you put in the water to inflate the balloon.

Isaac kept screaming and my medical training got me thinking about heamatemesis and peritonitis and likely stays on children's ward or helicopter transfers to Wellington.

Once we got him home I thought I'd take out his button to see where the bleeding was coming from and whether the balloon was in the right place or had popped or something. His helper asked if she could help so I said "Are you squeamish?" Luckily she was a nurse and was happy to hold Isaac's hands while I took the button out.
Once I got the button out I could see a small nick in the skin right by the edge of the hole. This was causing the bleeding - no heamatemis (vomiting blood) and no interference with the track itself so no peritonitis.
I put the button back in, gave Isaac some panadol and put on his favourite Praise Baby video.
Within half an hour he was a happy boy again, but it made me remember that even when we think Isaac's doing really well, the line between nothing wrong and something major wrong is very fine. Isaac is quite a medically fragile boy really.
In the evening Paul and I went out to hear Nigel Latta talk about bringing up teenagers (Hannah pointed out that she is now our only teenager and as she was babysitting for us it proved she was very nice so we didn't need to go to hear the speaker at all!) He was great and Paul has decided to ask him if he'll talk at a conference Paul is organising in Queenstown in August where they're discussing Palmerston North's newly established adolescent cancer service (Paul is the medical bit of the team of social workers psychologists etc).

Monday, May 11, 2009

Washing line

Today is Mother's Day in NZ. Because of this we went out to lunch to an Indian restaurant, then my treat was to spend time without the kids going shopping (not sure if this is quite what Mother's Day is intended for but it worked for me!).
While I was out Paul decided to put up a washing line as the concrete in the garden is now finished. He decided it would be best to have Noah with him, helping him. Noah "helped" by turning off the outside gas tap and the two switches for our heat pumps, he then came inside and turned off every switch in the fuse box, then went back outside to the play house and threw stuff over the fence into the college behind us. Paul decided to give him a specific job of holding the new clothes line and keeping it safe while Paul fitted hooks to the posts to hold the line up. Once Paul had done this he asked Noah for the clothes line but it had disappeared. Noah kindly suggested multiple places it could be none of which were correct. Paul then called in the big guns ie J! One of the benefits (and there are not many) of fostering a child who is hypervigilant due to her past, is that she is incredibly observant and usually very good at finding things that are lost (she's even better if in fact it's something she has hidden as is often the case, but that's another story).
Paul gave up then and calmed himself down by walking with the children by the river side to meet me walking home from the shops.
I love hearing stories like this when I haven't been involved and I thought it was made even better when J said "I don't see why we don't just steal a washing line from someone else's garden, at least we'd have one then."

Wednesday, May 6, 2009

Our wonderful aga

I haven't blogged for so long as life has been on a very even keel for us.
Lily had her hearing aid appointment at 9am on Monday and over the weekend I began to realise how difficult it would be for me to get her there in time while getting the others off to school. After explaining this to Paul, it was his idea (well almost) that she come into the hospital with him at 8am and he would then take her to the appointment and phone me if it was taking too long. Anyway it all went well, I got to have a lovely walk by the river while Paul sat through hearing tests with Lily. The hospital has quoted $1,600 for computer type aids (a lot better than the $4,600 we were quoted by the private service) and think they may be a big help for Lily's mild to moderate (not severe as originally thought) hearing loss.
I had a good ENT appointment today with Noah too. We've been putting in ear drops regularly since the last appointment and the wax was soft enough to be sucked out today. They were a bit silly telling Noah it wouldn't hurt when it obviously did - but he lay there so bravely saying "It is sore. Stop please doctor" The doctor obviously had no idea that children with Down syndrome could hold conversations and never talked to Noah directly. He just said to me things like "Please tell him to lie still"
Noah got the 'proud of you' plate at tea time (this is a specially decorated plate that just come out when the kids have been brave or got certificates at school) - this led to a bit of silliness from J who didn't want to be the only one at the table eating off a children's plate but once she realised her food would only be served onto a children's plate she soon gave way.

But my post was going to be about our aga. We are falling in love with it more each day, as it turns me into a great cook and does the ironing for me. I am learning how to start things off in one place (eg. bring rice to the boil on the boiling plate) then move them to somewhere cooler (eg put whole saucepan of rice into simmering oven and leave for 20 minutes while you bath the kids). Each evening we put one cup of whole oats and four of water into the simmering oven and have lovely creamy aga porridge for breakfast.
Our home group met at our house for the first time last night and one man came in and immediately recognised the aga (not common in NZ) and said how he longed for one. Another woman asked if she could take a photo to send to her friend. They both then sat and read my aga cookbooks during coffee time. I felt quite proud and maternal towards the aga!!