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

Wednesday, December 24, 2008


Now as if it were not challenging enough (what with all the busy-ness going on, especially at this time of the year) to keep on good communication terms with Victoria I noticed a new thing happening today. She was sitting in her chair in the kitchen - enjoying watching the hustle and bustle of Christmas food prep. She started to say something which, because she was pointing, was understood to be 'cup' - next she was saying something I never heard before. Thankfully, when I turned round from the washing up, I could see she was pointing at the raisins 'by-bites' is what they were until today, can't quite remember what that has evolved into today - it was enough that I understood she wanted raisins in a cup - which she got!
She's easy to please and VERY patient with those of us who are slow of understanding, thankfully.

she's also been very good about the Christmas tree (she signs 'christmas tree lights' - very impressive!) since we followed Lucy's recommendation of hanging a wooden spoon on a low branch at the front of the tree.

Thursday, December 18, 2008

goodbye portage

One of my readers has suggested that the postings here are a bit like busses in town - you wait for ages then you get 3 or 4 at once. I shall try and be less erratic!
Today we had the final visit from our portage lady. She didn't do much - just filled in forms and asked me if I knew what I was doing next. I could hardly say 'no, I think you ought to have continued coming until Victoria is compulsary school age' - now, COULD I?!!
Now it has come, I am not as bothered about it as I was when it was in prospect. I think we'll just carry on referring to the Developmental Journal and the eye-lady will keep us moving forward in some ways. If we get speech therapy (and I'm dubious about it) that woudl also help keep us a little on track.
I was re-reading some stuff I bought at Downs Ed. It offered suggestions for cultivating, maintaining and developing speech sounds (something the speech therapist was fairly adamantly against back in september.....) and therefore we are concentrating on 5 words which, with prompting, Victoria can say - she just needs to get better at them - and we all need to make her work on them. I think she uses fewer sounds now than when we used to run through the Jolly Phonics cards each morning - so we'll be back onto that. It often feels like it is 2 steps forward and 3 steps back - but at least Victoria is jolly about it.
She has recently been practicing looking after babies. She makes 'crying baby' noises whilst looking at her baby, then she takes it up and kisses and cuddles it. Then she lies it down and says it's sleeping - all very cute. On the walk yesterday she added the noise she makes for 'cold' to indicate that the baby was crying because she was cold. Well, who'd blame her, she hadn't any clothes on at all - I told Victoria to tuck her in under the blanket and she followed that instruction perfectly then looked very satisfied with the arrangement.
I don't think she knows it but I am sure that she is looking forward to seeing Timothy on Saturday.

Saturday, December 06, 2008

Ice Skating

Yesterday I took the children ice-skating. This was James' first time - he started by being pulled along by the arms (care of two others) and progressed to clinging to the edge and working his way round. By the end of the session he was quite confidently skating about in the middle and corrected himself even when an older child accidentally steadied herself on him. Meanwhile Victoria stood in her pushchair with her face at the window watching everyone and trying to pick out people she recognised. With 6 family members passing at regular intervals - many of whom stopped to 'kiss' her through the glass, there was lots of entertainment for her.

Wednesday, December 03, 2008


We arrived at the hospital at 11am - had to wait for 10 minutes to say I was there. Had to wait for a futher half hour before being called in for weighing (though not blood pressure, bafflingly). The echo was another 40 minutes later and 10 minutes after that the Dr was ready but really wanted the blood pressures.... Having missed out her morning sleep (and she was awake in the night again...) Victoria was on the worst form EVER. She completely 'lost it' when there was a suggestion of blood pressures (she had already been pretty distressed during the echo...). One arm was done and that inspired even more crying. the result was, predictably, worthless. By this time Victoria felt strongly against even the thought of a stethescope...
Consequently no useful information was gathered and on the strength of the percieved gain in weight (over the last 18 months since that was the last time she was weighed) the Dr recommends an increase in the dose of blood-pressure-lowering medicine (in spite of the fact that we don't know what it is doing.....).
Well, I knew that the outcome would be good because God manages everything - but it was a baffling day!. The children loved the ride up and down the river - we saw loads of interesting things and kept warm while doing it.
When we got home Samuel had the dinner ready for us to sit down to and Victoria was soon bundled off to bed.


I was going to take just one child - but now it will be 3 extras, and Victoria of course. We have an appointment with the cardiologist today. I'm not anxious - neither is Victoria!! We hope to get a decision about surgery on the aorta. Measurements will be taken to assess whether the blood-pressure lowering medicine has had effect - if it has it will be interesting to see if the lowered pressure in her lower limbs will now be still lower!

Well we're going to make a day of it and take a trip on the river.

Tuesday, December 02, 2008

patched up but happy

+ Raising Down Syndrome Awareness -