Updates on Victoria Lily Joy van den Broek, born 120705.

Saturday, November 29, 2008


Victoria did well at the eye appointment but it was evident that she is seeing less well in both eyes plus the fact that she is not using her left eye much at all. Consequently we came away with 3 boxes of patches and she will see the consultant in February.
I had a night full of dreams about eye-patches and trauma!. The lady we saw said that we should be aiming for 2 hours per day and that if we only got 5 minutes with her useful eye covered in order to make her other one work, that was good. Well, I put the patch on at 8am and David put her in the bouncer - for the first 10 minutes she was none-too-pleased but after that she made very little fuss. It was funny talking to her face and having the eye which is normally looking in at her nose LOOKING at me!! Richard took her out to see the goats and she wasn't even too bad walking round in the house. The signing film used up the rest of the two hours and now she has gone for her morning nap. So I'm praising the Lord that Victoria is not traumatised by patching (at least today!!) and that it seems to have had a positive effect even this once.
Having one extra thing to think about is a little tiresome but at least there are other people around happy to offer entertainment and distraction when necessary.

I must get a picture of her with her patch on - she looks very funny!

Saturday, November 22, 2008

snow-suits and eyes

The physio missed the appointment (she wrote it down and I checked it a few times during the day) - I guess that almost makes us even, I have forgotten about her intended visits on more than one ocassion in the past....
The portage lady has 2 more trips before she is finished.
We have an appointment (here) with the 'visually impaired' teacher lady coming up in a couple of weeks - she sounded helpful and I will have my questions lined up to fire at her.
As well as that we have the cardiolgy appointment coming up on the 10th of Dec.
I made contact with Cardiff and we have an appointment for their specialist clinic (for d.s. and their peculiar visual challenges) in Jan.
I've been trying to buy a new snow-suit for Victoria. Back in the old days one could buy them for up to 4 years old. I'm only sorry that I didn't keep some of the old ones. The biggest I can find now is 12-18 months and the body is too short (though the arms and legs are not). Consequently I currently have a mess of assorted things hauled out of my fabric-store and since I have a pattern whcih I think will do the job, will start to make a snow-suit - not sure about the hood though... I also found a pattern for a sleeping bag (one of those things with arm-holes) and intend to make one and put the fastening at the back. Victoria climbs and the only way to restrict her is by using one of these ingenious things. Teh two which she has are worn-out and they have the disadvantage of having the zip on the front - if it is reversed the neck is high at the front and low at the back! Well, I like a challenge so I shall aim to crack that problem over the next few days, especially with the prospect of the lowering of the temperature.

Saturday, November 15, 2008

reading etc

I've got an appointment for Victoria at the specialist (down syndrome) eye clinic at Cardiff - in January. Research has been done there into the use of bi-focals to address typical vision problems in people with trisomy 21.
Meanwhile we continue our daily 'schoolwork' sessions and sometimes, like yesterday, get VERY excited. At the start of yesteday's session Victoria knew that 'apple' was in there somewhere and had a go twice and then correctly identified 'flower, teddy' and one other word. She can flip the paper to see a picture so that she can check whether she was right. They we go on to match words - which she is pretty good at too. Some days even the word-matching is a disaster but, on the whole, I believe that the daily repetition and structure are laying a foundation upon which she will build. The only one of the names she consistently recognises is 'joanna' which she signs back to me.

Yesterday our walk was cut short by the distraction of the fish-shop (that was because I had taken Simon along!) where we had a lovely time looking at all the pretty flashing fish. There were also snakes and lizards in the shop. We bought a couple which Simon carried. We left him a the end of the lane so he could walk home while we continued to the post office. Victoria signed (and said, but not so as YOU would understand...) Simon, gone, home. What she says for 'home' is everythign except the first letter. On the way back 'ome' Victoria told me that she wanted to watch a 'film' about the 'bear' - we've been watching a bit of 'realms of the russian bear' each afternoon this week.
Earlier in the week Richard was determined to teach her to say 'zip'. He went through each of the three sounds but when he asked her to say the whole word she reversed the sounds and made it 'piz'. Everyone was highly amused! Entertainment AND education!
Having Victoria around is making us all sensitive to the way we pronounce words, which is no bad thing. this week, too, we watched 'My Fair Lady' (in 18 separate downloadable bits from utube!!!!) which caused great hilarity and futher focused our attention on our speech.
Victoria is ALMOST running - I don't think she has got to the point where she has two feet off the ground at once though - not quite!
Today mischief is likely to ensue as I am taking Lucy out for the day, for her birthday. I hope that Samuel will be able to keep on top of it and I'm sure that he will relish the hour when Victoria has her morning nap!!

Thursday, November 06, 2008


Here's Victoria hard at work - this morning she actually read teddy - and signed it and matched it (no picture clue) when Ron came in to bring me a cup of rooibosch. At the start of the session the first word she looked at was apple - and she signed apple - so maybe she can read that one too. One can't help pitying her when tipping out all the family-names - there are SUCH a lot to learn. Today I'm not sure that she read any of them but she has got a cold and is suffering from the effects of disturbed sleep over the past couple of days. It IS encouraging though - must get some pics printed so that I can make her a book with short sentences - that will prob. help. That she knows that a collection of letters in a group is a distinct word is an achievement - that she can match them up is another achievement. It's really exciting and encourages me to be a bit more diligent than I have been recently in our daily learning sessions.

back in the days when the sun shone....

Victoria with her favourite brother - David.

Wednesday, November 05, 2008

and another one...

this one isn't with the camera-face - she was just coming out of it at this point!
another thing I meant to say was that a couple of weeks ago, while we were at the table one of the lads said 'when I get married I want a little girl with down syndrome just like Victoria' - then another of the lads seconded that. A discussion about the inimitable character of Victoria was followed up with thoughts on adoption.... A friend having told me recently that she was shown a scan picture of a baby who was aborted because a positive test for down syndrome sends shivers down my spine - if only they KNEW what JOY Victoria (and so many other children with d.s.) brings - enough to make caring for such a person desirable to teenage boys - they wouldn't believe the discriminatory lie which suggests that this is a life which is of no value to be disposed of.

sunshine in the gloom

Victoria is a little ray of sunshine in the grey autumn weather. When the children have a laugh at the table Victoria can be guaranteed to extended by her joining in with the fun - she's so funny when she chuckles that we can't help ourselves.
A picture taken today of Victoria with one of our recent visitors is the best one of her I've got for a while so I thought I'd post it. When she sees the camera normally Victoria she makes a very odd face her 'camera face' - I'll include one of those some time but it's not very flattering!
+ Raising Down Syndrome Awareness -