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.