home from hospital

Isaac and me before surgery - he kept looking at me and signing "hat" - his cute pyjamas said "Hospital Property" all over them

Isaac just before bed tonight

Today started at 5.45 with changing two dirty nappies. By 7am I was simultaneously trying to make two packed lunch boxes, get four boys dressed, give Isaac his last food and drink before surgery, fill in his surgery information forms, pack an overnight case for A and U, pack a bag for day care for A, pack clothes for Isaac at the hospital and text Beth as she flies to Sydney - got a bit stressed.

I finally managed to get five of us organised to take Noah to school (Lily pushing Isaac in the single pushchair and me pushing A and U in the Double) only to find that Noah still had not managed to put on his socks and shoes!

We made it back from school by 8.50 to find that both the boys taxis that were supposed to come at 9.00 were already waiting. Lots of moving boys around and A and U had gone to be returned tomorrow at 9.00.

I decided I would walk to the hospital to get my daily exercise and have a chance to go shopping for half an hour - so easy with just one boy compared to three.

I sat for a cup of coffee then noticed the pushchair - mountain buggy was quite hard to push. The front wheel was entirely flat and needed a new inner tube before there was any hope of using it.

So we ended up going to hospital by taxi with a lovely driver who listened to my story about Isaac going for surgery then charged me a round ten dollars rather than the $10.40 his meter showed.

As is usual in hospital youngest patient goes first so Isaac was first on the list as he was the youngest patient by about 70 years! We were warned the surgery would be at least one and a half hours and it took about two and a half from leaving him after the anaesthetic until I was called to recovery. Paul was hoping to be with me but ended up being the only haematologist in the hospital and having two new patients with leukaemia.

This may have been Isaac's sixth surgery but the waiting time doesn't get any easier. I walked down to Terrace End to the lovely magazine shop there, spent some time in Paul's office while he reported bone marrows and some time in the hospital canteen. The ophthalmologist said there had been lots of scarring from the previous surgery and he wasn't sure how straight Isaac's eyes would be. He said they'd be very red for a few days.

Isaac also had grommets put in so when I got to the recovery room he was oozing blood from both eyes and one ear. We got back to the day ward at about 4.30 and two hours later he was ready for discharge.

I was so pleased A and U are with other caregivers tonight as we didn't get home until 7.30 after buying groceries and pizza.

We have just put in Isaac's eye drops and ointment, taped socks over his hands to prevent him scratching his eyes and now he is off to bed with me soon to follow I think!

hurtful comments about Isaac

Isaac got invited to a birthday party at the weekend which was a major first for him. It was held at our local playcentre Lollipops.
We sat down for afternoon tea with about 8 little boys and one rather obnoxious child immediately looked at Isaac and said "He's got a funny face". Mostly children's questions are very open and even cute but this little boy seemed to be coming from a nastier side.
I calmly replied "He's got a funny face because he's got Down syndrome. He takes longer to learn new things"
Then he said "Is he a baby?" I explained how he'd had problems eating and was very small - still with a slightly "off" feeling.
Then when it was time for the birthday boy to open his presents, the nasty boy pointed to Isaac and said "I expect he's bought a baby toy"
Usually stuff like this rolls off my back but I found this little boy very hard - he did continue on asking quite inappropriate questions of other people too and I think some of the adults there were a bit embarrassed by him.
Made me realise we still have a way to go until our children with DS are accepted as we'd wish - thank goodness for the school our boys are at where the other kids are fantastic with he kids with disabilities.
I feel a bit over protective of Issac maybe as he's been through so much and tomorrow he has his sixth surgery this time for grommets and squint. The fostering agency has found another caregiver for A and U for the day and overnight.

goodbye Beth

Beth and James were in Palmy for the last weekend to attend a wedding and say goodbye to us before they move to Sydney on Thursday. This is the same day that Isaac has his surgery for grommets and squint so I shouldn't forget it.
It was great to see them and Beth even started the day (at 6am) by sorting out a squabble between A and U then changing a dirty nappy so she was very welcome!
The boys were having a medical assessment today so I wrote a report which helped me realise what emotional problems they have with relaxing to sleep and the like but also what amazing progress they've made i just a few days here. Both boys didn't have a tantrum when they were dressed the morning and then both said "Get down please" at the breakfast table - two firsts.
We are also understanding more and more of their speech and enjoying listening to them - a "brushteeth" for a toothbrush and a very worried look from U when I said the thing in the newspaper was a crossword as he thought I was angry!
I am learning to make the most of every moment of the day, never going upstairs empty handed and so on. And I so SO enjoy the few minutes a day I have when the boys are asleep. Paul is tending to take over in the evenings now sitting in the boys room doing emails on his I-phone so this means I can heave a sigh of relief at about 7.30 and then crawl into bed soon after 9.00!

sad little boys, exhausted carers

Life is very hectic - it is amazing how exhausting it is trying to constantly give out vibes of calm and reassurance to two traumatised little boys.
They must be settling as they are showing us some pretty massive tantrums now over such things as sitting in a pushchair, getting dressed or having to come for a bath.
I dared to take the double pushchair to the shops today as A was at daycare. A tantrum started in the plaza so we walked calmly (at least I hope it appeared calm when I was holding U's hand to stop him tipping out of the pushchair and Isaac's hand to stop him scratching U as he was so scared by the loud crying)to the square 0 the park at the centre of Palmy. We then had 20 minutes (there is a useful clock there so I could time it)of totally out of control screaming, drooling, leaning out of the pushchair upside down while I tried to talk calmly to Isaac about the ducks round about.
Once the tantrum was over U was back to his very charming self. He's had 5 tantrums today so lets hope we've reached the worst!
U is very attached to a pair of shoes his mum gave him which are too big for him to walk in - but today I managed to buy him a pair that fit (this involved another tantrum I've just remembered but a relatively Small one which didn;t involved needing to leave the shopping centre) I still let him wear the big pair to bed he only needs the new ones on occasions when he has to walk!
It is amazing to see these two little boys changing everyday - they love books and although they're very delayed in language they just love singing songs and trying to talk. They so hate bedtime though - it's a bit sad to wonder why
I have taken to watching Jon and Kate plus 8 as it makes my life seem relatively quiet!

toothbrush to bed

An experienced foster carer once told me she had never known a child come into care and bring a toothbrush. A and U didn't come with a toothbrush of course, neither did they have any toys, socks, undies or much clothes that fitted.
They do however want to squeeze themselves into any clothes that remind them of their mum and the little one U insists on wearing his several sizes too big shoes around the house all the time without socks.
I asked Paul to pick up two battery operated toothbrushes on his way home from work yesterday - since then the boys have barely been separated from them and even slept cuddling them.
Suddenly it seems as if my children have so much.

two sick boys

Our two visitors have arrived the story seems to be changing somewhat especially the "spend all week in day care" bit
The boys are very cute and obviously sad - they have no idea why they left mum. They respond to calming so have obviously had some good parenting sometime.
We had to start by taking them to the holiday programme evening that Noah had attended bit loud and overwhelming.
They were very sad going to bed and U (the two year old) then vomited over all his cot bedding then fell asleep. I thought at first this was just stress but as he repeated it twice in the night and then had very dirty nappy this morning and as his 3 year old brother A is now asleep on the couch with a temperature, it seems it is not just stress but a bug and a reason therefore to not go to daycare but give me a day shut in at home with four boys!!
Beth sent a text last night reminding us that she is in Palmy next weekend and asking where she will sleep!

Gisborne holiday

We had a lovely three nights away in Gisborne - even the five and a half hour journey wasn't as bad as expected although it was still quite an adventure in the dark and rain on the windy narrow road leading from Napier.

We stayed in the Captain Cook motel right by the statue

Just along the beach is the statue of Young Nick (the first person to see New Zealand) Hannah and Noah said "Land Ahoy" by his statue and then at the playground.Isaac had a new first when he was served and ate in a restaurant - we were at the Lone Star and hadn't ordered for him but the waitress asked if she could bring him some ice-cream .

On the way back we stopped at some hot springs

it was a lovely walk through the bush to get to them

then we spent the afternoon in Napier.

On the fostering front, we had a lovely time having J back with us for two nights - it was interesting to hear what she remembered of her time with us. Her court case has still not happened after more than two years but there should be a 9 day contested hearing in July.

We have just agreed to take two little boys aged 2 and 3 for two weeks - they arrive tomorrow afternoon.

Isaac's first Easter egg

It's hard to believe that a year ago Isaac had never eaten. We would never have believed if you'd told us last Easter that this year he would see his Easter egg and do this!
I don't buy the children too much chocolate - they have a small egg from us and a small egg from my mum and dad (and this year Beth sent them one too) - that way I don;t have to spend much of the Easter break policing how much chocolate each person has eaten and which left over bits belong to who. In fact this morning we are just left with 3 tiny chocolate eggs - Lily holds the record for making chocolate disappear the fastest!

Happy Easter

pictured is our Easter egg stash before my sister Caroline and family visited yesterday. As I couldn't find any Easter chicks we used our bath ducks on the Easter cake (which had the slight disadvantage of a moister cake when they leaked a bit!)

It was a good time and we had a very late lunch with the five of them arriving from Wellington and Sam and Anika arriving from Auckland. We had just finished lunch at 4.30 pm when Hannah realised it was nearly time to go to the movies with the Zone 21 group (the youth group short for chromosome 21 that she helps lead for young adults with DS) she also kindly took Noah, Bret and Caroline left soon after so within a matter of minutes it went from complete chaos to adult calm (especially when we put Isaac who was the only child left down for a sleep) and Paul and I sat in the upstairs lounge and talked to Sam and Anika for a while without interruptions!

Both are really enjoying their jobs and they are actively looking for new accommodation as their current place grows mould everywhere.

Over the next few days, we have been asked to provide 2 nights respite care for J the little girl we fostered for 15 months who left us last June and we are also going to meet up again with the teenage girl we sometimes have stay with us who has recently been through lots of (mainly negative) experiences.

Paul has a clinic in Gisborne next week and rather than just him fly there as usual, we are going to drive there and have a kind of holiday for a few days - that is the boys and I will have a holiday and Paul will be at the hospital doing a clinic!

Noah in the kitchen

Noah has tried to help over the last three days off school. One day I came down and found the island unit of our kitchen completely clear - unfortunately everything that had been on it was now neatly on the floor (including sharp knives for Isaac to play with).

Yesterday Noah called me to look at his "collection" - everything he could find in the kitchen had been put in a carrier bag on the floor - there was a bag with Isaac's leaking cup, another with a flower pot from the garden, one with the food we were going to have for tea and all the Easter eggs stuffed into another.

He has also invented a new method of restraining himself at meal times - just stretch your t-shirt over the chair!
This morning Noah showed a lovely example of his concrete thinking. He was in our bed and Paul rather affectionately called him "you funny old thing" Noah said "I am a boy not a 'thing' and I am not old. You are wrong two times dad."

Not to be outdone Isaac showed me how his language is progressing. I gave him his breakfast (usually a high calorie mixture of Weetbix, nutella, pediasure powder, cream and a slurp of iron medicine) and said 'Oh dear I forgot the iron' Isaac started growling and I was a bit puzzled until I realised he was signing 'lion'!