lots of appointments

Lily's ENT appointment was less frustrating than I expected. Not a great start when I realised the appointment was just with a registrar and when we had to wait 40 minutes with Isaac getting more and more restless, but when we met the doctor he explained a few things and listened to us. He said that Lily's main complaint -the pain in her ears with certain noises - was impossible to treat at least here (a few places try playing sounds through earphones gradually getting louder over a few weeks). He said that avoiding loud noise will make the ears gradually more sensitive to even quiet sounds.

He also said the ABR test (the objective test showing what sounds get through to the brain) probably won't be very helpful as it is how much speech Lily hears subjectively that matters. So he said yes to her hearing aid appointment at the hospital on Monday and thinks the aids will cost less than $4,600 and she can try before paying. The reason the hearing aids we were quoted were so expensive is that they have a computer in them which can try to reduce the sound frequencies that Lily finds uncomfortable.

Isaac has two hospital appointments today and not back-to-back either. So we've just returned from the orthoptist who said his squint is worse and he'll probably need his right eye patched soon to force him to use the left one. His glasses are on order though so she wants him to try them for a month or two as they will straighten up his eyes a bit too.

We'll have lunch at home, pick Noah up a bit early from school and then return to see the dietitian. Isaac still has not regained all the weight he lost when he started walking so he's still just under 11kg. It's hard to get much more than 900ml of food a day into him so I'm wondering if he should start on a more concentrated feed.

Luckily (well not for them) my friend's son is on children's ward at the moment so we were able to pop and see them this morning and she has kindly offered to look after Noah during the dietitian's appointment.

Next week I just have hospital appointments of hearing aid appointment for Lily on Monday and ENT clinic for Noah on Weds. After that we have two weeks hospital free!! until Isaac's paediatric appointment.

Sunrise

It was a beautiful sunrise this morning (and now it doesn't happen till nearly 7am I'm awake to see it!)

This was the view from our bedroom balcony. it has been so unseasonably hot that I was able to go out on the balcony at 7am. I was very surprised though to look down and see Paul running past - I thought he'd gone downstairs to make me a cup of coffee but he'd gone for a jog!

This may be because our son Sam has taken up jogging in a big way and is in the Palmerston half marathon and then a full marathon later this year. Hope Paul is not going to compete with him!

Hope this memory will keep me calm durign the ENT appointment for Lily I'm about to go to!

Isaac's first day at Kindy

My little boy who seems nothing but a baby (and weighs less than 11kg) has started at Kindergarten today! Another mum was starting her 3 year old daughter who looked enormous beside Isaac.
He went charging into kindy and didn't look around for me at all while I was in the office sorting out papers. He has a helper for 2 of the 2 1/2 hours and as he settled so beautifully I was free to come home.
I had a cup of coffee out on the patio with the door open wide in case kindy should phone. Except for his time in hospital and our weekend in Auckland and week in San Francisco I've not had time away from Isaac. I kept thinking he was just upstairs asleep.

I picked Noah up from school and walked with just him back to the kindy to Isaac who received us with mild interest. He is sitting watching TV now slightly tired but seeming to say "What's all the fuss about?" My last child leaving his mum - he could at least make a fuss!!!

Wath I whod lick

The subject of J finding an always family came up very naturally the other morning when Lily was talking about going to Disneyland for her 21st birthday. J asked if she would be able to come and I said that she would be living with her always family by then not with us. The court may be moving extremely slowly but a decision will definitely be made by then (August) even if it is not the returning to mum that J would like.

We briefly talked about what kind of family she'd like and when I came down to breakfast I found this rather poignant writing by J.

Someone pointed out to me that it sounds a bit like our family (no swimming pool here though) so maybe J is bonding a bit to us after all even if it doesn't feel like it.

Since my last post we've had (and enjoyed) our housewarming party for the local Down syndrome association. More than 50 people (18 with DS and their families) fitted easily into our open plan downstairs.

Luckily the concrete wasn't poured that day but it was poured yesterday and I had to lock us all into the house to prevent any little footprints!

Whilst contaiend in the house and surfing the net, I managed to find and book some very cheap Qantas tickets to LA for Lily's birthday - she chose to travel on her birthday as she will then be able to celebrate her 21st in NZ and then again in Disneyland. This may not work as perfectly as she thinks as we leave Auckland at 2.30pm and then arrive in LA at 7.30 am which will feel like 2.30am to us!

Hannah has kindly offered to look after Isaac for the week - the thought of travelling with all his tube feeding equipment and doing Disneyland was just too much and TOO expensive. We almost decided the whole trip was too expensive but it is also our 30th wedding anniversary this year so we're taking it as a celebration of that too. (Paul has said "I'm not sure my dream honeymoon is taking two kids with DS to Disneyland" but Lily, Noah and I were able to persuade him otherwise!)

Feel Good day

Yesterday we went to the local production of The Sound of Music. It was wonderful, so old and corny but moving as always. Then Hannah showed me how to use "I tunes" she wants to buy a new I Pod and hopes to persuade me to buy her old one, well I tunes is kind of like to songs as amazon is to books - you can find loads of copies of your favourite out of date songs. I spent hours (and quite a lot of money on the credit card) downloading some favourite oldies like "The way you look tonight" and "The Old Rugged cross"
Also through many of the American blogs I read I was linked to the you tube of Susan Boyle appearing in Britain's Got Talent - a real fairytale clip.
NZ's only real national paper, the Sunday Star Times also had a great interview with Michael Fox - I think I'd like to read his book "Always Looking Up"- I thought this quote of his about having Parkinson's was applicable to having kids with DS too.
"The one choice I don't have is whether or not I have it. But beyond that my choices are infinite. How I approach it is up to me. It has a lot to do with - and this is hard - accepting it. And that doesn't mean being resigned or not looking for a cure. But if you're trying to get away from it or change it, you're going to wear yourself out."
So all in all a day full of thought provoking and feel good experiences - and we didn't even make it to church!

My new sign

We're gradually (actually that should read Paul is gradually) getting on with finishing touches to the house like curtains. Tonight for the first time we will not have to scuttle into bed to avoid being seen by passing motorists, instead we'll just draw our bedroom curtains.

Paul has also put up my new sign. It's a copy of an old war time poster that was found at the bottom of a box of second hand books at Barter books second hand bookshop - they now make quite a lot of their money by selling facsimiles of the poster

It suits our house well don't you think?

Hannah has arrived back from her two days with Beth in Auckland and was here last night (just for long enough for Paul and I to go to the supermarket without any children) this morning she went as a helper to a teenage camp and we have to do a real rush tomorrow to pick her up from the camp after church, drop Isaac off with some friends and then the rest of us will watch the production of The Sound of Music, starring Lily's school drama teacher as Maria and the girl who runs their High School Musical dance group as Liesl.

I have just realised too that we have invited all families who have a child with DS to a house warming party here on Monday. It will also be a party to wish one of the boys well as he goes for his FOURTH and very risky open heart surgery the week after.

Unfortunately the driveway is no where near finished - I wonder if we could end up with wet concrete when everyone comes? That would be very interesting! So we're in for a busy time preparing for that now!

Noah's sandwich

Noah is learning some independence so we should be grateful shouldn't we? Or maybe not when he uses at least four ounces of butter with a few hunks of cheese in it trying to make himself a cheese sandwich!