Friday, December 26, 2008

Luke's First Christmas

This is Luke having Christmas lunch in his new seat Nana gave him. I love it as the tray is just the right height for him- in his high chair he can hardly see the tray because it is so high. It is also helping him with his sitting- not Luke's forte because he likes to be on the move. He loves it!

The parts for Emily's bike were delivered to Nana in Christchurch, and arrived here at 10.30pm on Christmas Eve, just in the nick of time! A terrible photo of Em, but you get the drift :)

So all in all a very Merry Christmas!

Tuesday, December 23, 2008

Christmas Madness!

I have just been trying to sort out a near disaster. We have got Emily a trike for Xmas, and being organised, Neil got it out to assemble it last night. Bit hard with no nuts and bolts in the box, and it had no bell. Have been madly trying to get Toy Planet to send us the pieces, but a bit hard this late, and being so rural. Plus the lady on the phone has to get the boss to OK sending us the bolts from another one, and he is out! Useless.

She assured me that I am the only person who has had this problem. Do I feel any better? No I do not. There is not much solace to be found in the fact that my daughter is the only two year old who is going to be getting trike components for Xmas. She is good at puzzles but not that good! Imagine: "Here you are Emily. This makes a lovely tricycle. See if you can put it together now. There's a clever girl. There's a trick to it!" Ridiculous.

Worst comes to worst I will send Neil to the bike and hardware stores for new bits, and bill them. Who needs the stress?!

Friday, December 19, 2008

Last Day at Omakere School

Well, the last official day for Neil as principal of Omakere School, and Ben's last day as a pupil there has been and gone. It is quite bittersweet for us, because Omakere has been a great place to be, especially for Ben and Neil, and we have met lots of amazing people. I will miss my friends, especially Anna, and Ben really doesn't want to go. He has already told me that he will be shy at the new school and hide behind my leg, and when the kids ask what he is doing, I am to say "He's just feeling a little bit shy right now'! So I have learned my script and we will see how long this shyness lasts. Ben is a pretty outgoing character, and he has lived at a school for the past 18 months, so I don't see him being shy for too long!

For those of you who don't know, Luke is the reason for our move. The Early Intervention available in this region is fairly basic- he saw the VNT twice in his first 5 months, and although he has now been seeing her monthly, this is not optimal. She has been great, with lots of good suggestions, but it is something I worry about a lot, especially as all the research points to Early Intervention having amazing outcomes for kids with DS.

So we looked at a couple of options- one being returning to Palmerston North. That would have been relatively easy, with our house there and all our friends for support. But the services there are very similar to what is available here, and seem quite fragmented. There is a great group started by parents, ABCD, which provides some extra intervention, and I have driven the kids there once a month for that too.

The best option was the Champion Centre in Christchurch. We have got a place there for Luke next year. We (Luke, Emily and I) will go in every Friday for therapy, and it is done in a fairly holistic manner, with the VNT, Early Intervention teacher and speech language therapist all in the same room. Plus with Mum in Christchurch it is the best option by far. She has been wanting to get her ands on the kids for years!

We leave on the 8th of January. Only 3 weeks to go. Hopefully they will be 3 lovely hot Central Hawkes Bay weeks, because I couldn't appreciate last summer as I was so pregnant and uncomfortable.

I am looking forward to our lovely new house in Ashburton- won't miss this one too much. But I will definitely miss Omakere, being up at the school and the Playcentre, and all our new friends.

I hope 2009 will be an easier year than this has been.

Thursday, December 18, 2008

Luke's latest test results

We have had a letter from the paediatrician this week, referring Luke to the Champion Centre down south, and it includes the results of his latest blood tests. So here goes:

  • Luke's hearing is clinically normal, but needs retesting as it was inconclusive last time.

  • Luke's eyesight is good.

  • The droopy eyelid he had at birth has gone.

  • Luke is feeding well and eating lots of solids and finger foods (just not squishy ones that feel yuck!)

  • His heart is not enlarged, and his heart sounds are okay. They still cannot hear a murmur, but the 8mm atrial septal defect he was born with is unlikely to close completely spontaneously, and he will need a scan early next year to check this.

  • His physical and speech development is excellent- essentially 'normal"!

  • His thyroid function is normal- last time he had sub-clinical hypothyroidism

  • His full blood count and blood film are normal

So all in all, things are good. Yay Luke!

Friday, December 5, 2008

Breast is Best!

I have been attempting to give Luke a bottle a couple of times a week for the past several weeks, just to have the option of leaving him with someone else from time to time. He had been very reluctant, and the most I have been able to do is to get him to chew on the teat. He gets a tiny bit of milk in his mouth, and lets most of it dribble down his chin. Hopeless!

Yesterday I had an appointment, and so left Em and Luke with Gail. I left his food, a water cup, and the bottle, thinking he would be more likely to try from someone else.

While I was away, Luke had decided to guzzle not one but two bottles- and looked as though he had been on the bottle his whole life! Little monkey!

Monday, December 1, 2008

Ben's First Day at School

Ben started school last Monday- 3 1/2 weeks early. You can do things like that when your father's the principal!

He has been counting down the days for months now, and was so excited he was ready to go at about 7am. After the manditory photo call, he picked Em up, looked her in the eye and said "See you later Em. I'm gonna miss ya." Then blowing kisses over his shoulder, he walked across the driveway to school. So very cute and suddenly so very grown up.

The only near hitch was when his deeply uncool mother attempted to put both bags straps over his shoulders. "I just have one strap mum, like the big kids. I'm a big school boy now."

Boy how time flies.

Tuesday, November 25, 2008

Last visit with Dr Phil

Yesterday Luke saw the paediatrician he has had since he was born for the last time before we move. He had the usual weight and measure, and he had put on over 400g since the last visit 2 months ago and grown 3cm in height, which is good. He had been slipping down the percentiles, but now that he is eating more solids, he has leveled off and is now following the curve, which is great. Dr Phil was pleased with how he is progressing, and still cannot hear any sign of a heart murmur, which is a good sign, but as his ASD was so large at birth it is unlikely that it has closed completely, so he has recommended that Luke have another scan once we are in Christchurch. He also had all his blood tests done, so we will have the results in a few days. Hopefully there is nothing to find there.

Antenatal testing

The next person who asks me "But didn't you have the test?" when they find out that Luke has Down Syndrome, and that we didn't know until after he was born might just end up with an injury!

Is is totally unfathomable that we had chosen to not have the scan because we had decided that if we had a child with a disability (and we had no idea of course that we would) that we would still want that child as much as any of our others? That Luke is a sibling to Ben and Emily and that we don't want any other baby, just this one? That sometimes life doesn't turn out just how you expected and hoped, but however it does turn out is still ok?

A nurse who was pregnant recently said to me "Did you have the testing done?" and I explained our choice to her. (We had had a scan at 8 weeks and all was well, and we were shifting to a new area 2 hours away, with a 45 min drive to the hospital for the next scan, so decided to flag it, as we would be having the baby anyway and were not at high 'risk'.) She informed me that she had had the scan and all was fine- I didn't tell her that I know multiple people who had a very low risk from the scan, and their child was born with DS. Then she said "But why would you think you would need to get tested anyway- after all, your other two are perfect"

The answer to her question is that all my children are perfect- Luke included. That certainly shut her up!
Several other people have expressed surprise that i was only 32 when Luke was born. When I inform them that 80% of children with Down Syndrome are born to younger mums, their response has been that that must be because younger mums are not tested. The implication of that is that we would all choose not to have our babies if we knew, which is certainly not the case, and is extremely offensive to me. The reason 80% are born to younger mums is that 80% of babies or more are born to younger mums. Nothing to do with testing. Simple numbers game.

So if you are ever tempted to ask anyone such a personal question, maybe ask if they knew before the baby was born, or maybe just keep your mouth shut. Because I don't want any other baby, I only want Luke, and I love him as he is.

And to the woman who asked a friend "Who wants a baby with Down Syndrome anyway?" the answer is ME.

Wednesday, November 12, 2008

Audiology Check Up

I had to take Luke to the Audiologist yesterday to have his hearing tested before we move. He was a bit too young to be tested by the method they use for older kids, as he was more interested in the assistant's face than the noises coming from the speakers. Then they tried using the plugs that go into the kids' ears, but they could only test one ear drum properly because they couldn't get a seal in to his ear because his ears are still so small.

We had to be really quiet, but try telling Emily and Luke that, so there was a little bit of background noise with them wriggling and whispering and a bit of chatting from Luke. Then the Audiologist informed me that Luke has some mild hearing loss in both ears, but they couldn't be certain because of the background noise in the test, and it was most likely caused by a blockage and could well come right, or it could be nerve damage. I was a bit blown away, because he seems to be hearing fine.

I asked what that meant, as he was tested at birth, and the nerves were all perfect then. They looked at each other, and asked where he had been tested, as the results could not be found!!! He was tested at the hospital in the ward the day after he was born. I was then informed that it was almost certainly not nerve damage, and was either nothing (inappropriate testing for a little boy) or some mild conductive hearing loss, and he needs retesting at about 1year. Talk about frustrating and stressful for nothing. Got to love the health system!

Pet Day

Emily with Ella in the Playcentre section.
Neil and Ella

Ben, his friend Sam, and their lambs Chargy and Tinkle.

We had a great time on Friday, and Luke and I were the only ones from our family without a pet!

Ben and Chargy in the parade.

Sunday, November 9, 2008

Ben and his brother

Luke's Commando Crawling!

Luke began commando crawling today- after the cat! She was quite wet by the time he had finished, and Luke had fur in his mouth, but she is very tolerant. She must know he is only little, because she is not always so nice to the rest of us!

Friday, November 7, 2008

18 months or so ago, my then 3 and a half year old son Ben turned to me one night, and said "You've got a baby in your tummy Mummy." I was quite surprised by this and denied it, but he was quite insistent. "Yes you have, you're tricking me!"

Although we wanted a third child, we had only recently made the decision to start trying, and thought it unlikely we would have conceived so quickly.

After I had put Ben to bed that night, I mentioned it to Neil, and we decided it was nothing. Over the next 10 days or so, Ben kept bringing it up. "When you have the new baby Mummy, can he sleep in my room?" and "When you have the new baby Mummy, I'm going to buy you some wedding shoes". He even showed me the shoes in a shop one day, and I must say that they were hideous and I am very grateful that he forgot about that particular promise!

Two weeks later, Neil was offered a new job in a very rural area, and the next morning I found out I was pregnant!

All along Ben was adamant that the baby was going to be a boy, so much so that we decided that at the 20 week scan it would be a good idea to find out the baby's gender, so that we had 20 more weeks to talk him around if it turned out to be a girl.

At the scan, we were all really excited, especially when we found out we were indeed having a little boy- except for Ben, who simply said "I know. I TOLD you."

So after all that it seemed fitting that he should name his little brother, so Luke it is! We drew the line with Skywalker as a middle name though, and decided on Neil instead, after his dad.

When he was 36 hours old Luke was diagnosed with Down Syndrome, but that's a whole other story.