Victoria

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

Thursday, January 23, 2014

Cake

Currently aged 8 and a half.

The most exciting development in Victoria's life in recent months is that she has learnt to say 'cake'.  She even goes about practicing the 'c' sound so that she can try it in other words (such as 'kitchen' - which still gets a bit muddled).

Since September we have been having weekly French lessons.  Victoria enjoys them and loves to try and make the strange sounds involved in the French language.   She has some french children's songs on her ipad which she listens to over and over.

She also continues to enjoy RDA - last time she rode like she was pretending to be a cowboy, seemingly she had little understanding of what the reins were attatched to - so I explained that.  She doesn't get to ride again until the end of February - hopefully she'll still remember.

she loves the usborne sticker dolly dressing books - especially the pink ones with fairies or princesses.  If we are out shopping all things pink and sparkly exude some kind of magnetic attraction to her - funny, none of the others were affected this way!

dollies are still a valuable part of Victoria's life - and she has recently learnt to put clothes on to the dolly - rather than just take them off.  She's even learnt to do buttons up.

Wednesday, December 12, 2012

recent excitement


A visit from Timothy, Anna and Lynette (especially the latter) has been a great joy for Victoria.  To have everyone here for a family gathering (though we were only ALL here for about 2 hours!) was a joy for me too.   I got some photos!  If we managed to get everyone looking it once, there wasn't a picture being taken - this one's not too bad.  The little ones were, by this time, a little weary.  The top picture is Victoria ready for bed giving Ronny a hug.

Next we are bracing up for Christmas - with another chance to have Ronny visit - twice.  In between the visits of the Taunton folk, we will be visiting the Thornhill folks - hopefully by then Josiah will be fully recovered from his cold.


Tuesday, November 13, 2012

Home

So what happened was that we arrived at the hospital just about bang on time (2pm) and the lady responsible for play came to see Victoria with (most helpfully) a 'doctor's box' with things she could try out on 'quiet baby'.   We explored all the things in between trips here and there for tests.   I hadn't said anything about the possibility of blood tests - last time it was very traumatic!  When it came to that we distracted her with looking at the pictures in a book and counting things - and she was very well behaved.     All of that was done in the day-ward and before bedtime we were moved into another ward.
Just before bed there was another echo and an xray.  she didn't sleep very well (and I hardly at all!).   She wasn't allowed anything to eat or drink and went down for the catheter about 9.15am.   It's always hard to watch a child being put to sleep - there they are, wide awake and apprehensive one minute and then gone.   I'm sure there's something to be learned from that but don't have the leisure to consider it right now...
I went off for some breakfast - which was a disappointing - the bacon, mushroom and potato had obviously been waiting to be eaten  for some hours already.
then I went back and sat waiting for news whilst reading an informative book by  John Humphreys (of radio four fame!).  After a while I began to feel worried that I wasn't worried...   When almost two hours had gone by the Dr came and said that it was all OK and Victoria was in recovery.   He said it was a long narrowing but the stent was securely in place.   It can somehow be enlarged at some point in the future when the rest of her has grown and needs a wider artery at that point.  About an hour after that she was back and feeling drowsy and uncomfortable .     The rest of the day was a bit glum - nausea and vomitting being the worst things.   Victoria didn't say anything about the fact that we'd had our 'one night' and were heading for another!   She was very glad to see Joanna, James and Daddy - who probably spent much more time driving than they spent actually visiting.   A bit of home-made rock-cake was the first thing to stay down and Victoria had a lovely sleep - being monitored from time to time.
This morning's bp readings showed that there is a much better balance between upper and lower limbs than there used to be - which was the aim of the stent implantation.  The Doctor came to see Victoria again this morning and after I pointed out that the bp readings were a) more balanced and b) low-ish, he agreed that she could do without the atenolol (hooray!!!).   I will be interested to see now what the bp settles up to.  After three months of asprin we will see the cardiologist again DV.

I'm sure that the prayers of so many smoothed the way for the effective implantation of the stent and am thankful that all those 'risks' which were listed by the registrar ahead of time were not part of the Lord's plan.   The world would be a poorer place without Victoria, so I'm glad she's spared to us.



Sunday, November 11, 2012

Hosptial

Victoria goes this afternoon into the Brompton for a cardiac catheterisation - hopefully they will install a stent to sort out that troublesome co-arctation.   I'm glad to know that the Lord is in control even of that tiny and unseen aspect of His marvellous creation - but when they looked at it 5 years ago it wasn't feasible to just 'put in a stent'....    If everything is straightforward, we will be back home on Monday evening.

Odd, having lived with it for so long, to have the prospect of having a solution to this, other little 'fault' in her cardiovascular system, sorted out.  We are aware of our priveledge and thankful again for all the very many people who are knowingly and unknowingly contributors to the proposed correction.

Tuesday, November 06, 2012

aorta

At the appointment last month Dr Magee suggested 'after Christmas' for the stent-or-whatever.   Last Friday (while I was trundling back from Thornhill to see Samuel) Ron got a phone call from the Brompton to suggest last Sunday for treatment on Monday.   He declined the invitation, in the circumstances!.  Today they phoned again and we've arranged that we will go on Sunday for treatment on Monday.
Victoria is used to the idea so not worried at all.
Meanwhile we're having fun watching the new batch of kittens which, due to the cold, are indoors in a crate.

Sunday, October 21, 2012

aorta

The annual cardiology review was on Friday.   The ecg showed that it is now a good time to 'do something' about it.   Options (as before) stent or surgery.   A referral will be made and the 'something' should occur early next year, DV.

When the appt. was over Victoria looked at the Doctor and said 'thanks for coming, bye!' !!!

Now we start, slowly and steadily, to prepare her for the concept of going to hospital for a short stay.

Monday, November 07, 2011

Ipad

A couple of weeks ago we got an ipad for Victoria. This was after a friend had showed us his - I could see that it would meet all I was looking for in a small lap-top for Victoria (except CD drive...). For those of you who have children with D.S. for whom you'd like to get the most useful apps, here's a list of the ones which Victoria likes best (though the first one is now 'hidden' because V. would spend all her time on it otherwise....):

Ansels Africa - two aliens (would you believe it!!) are touring africa, 'photos' can be taken and a sort of scrap-book is formed. Information about the various animals (which I think is passing her by altogether) is printed and read. Jolly music (which hasn't been so awful I feel compelled to switch it off!) happens. One of the things I've seen her do is move 'blank' animals under a machine which drops spheres of various skin-patterns - if you get them the matched up you're commended for dressing them appropriately! Well, she enjoys it......
Special Words (this has the words which Victoria has been learning - obviously developed in cohoots with the Down Syndrome Education Trust - with the option to change the word and record the sound yourself - as well as adding more words / pictures / audio files) Essentially it is a matching game - words to pictures, pictures to pictures (turning the sound off with words to words gives the highest level of challenge!) with 4 'cards' per 'page'. This cost £10 and is well worth it.
Injini childhood development package. This is brilliant. I can't praise it highly enough. The free trial version was so good that I took the plunge and paid the £35 (ish) for the full version. This is a collection of 9 (so far - though they say more will be added) games including matching, puzzle, farm (where you can 'make' the sunflowers grow, shear the sheep, wash the pigs, feed the chicks, hatch the eggs, feed the cats and toss carrots to the rabbits). Frog gives the child practice in tracking and drawing a line from the reptiles mouth to an insect - whereupon he sticks out his tongue and eats it. One of her favourites is 'find it' - a polite little angelic-type being stands patiently to the left of a drawer which opens to reveal various objects - a request is made to 'find' an object and pass it to the duly thankful angel. Another favourite and helpful game involves tracing a line - various directions and angles as well as curves - whcih then morph into aspects of jolly pictures - then the word describing the main object appears - along with a voice saying it. I'm aware we've only had it two weeks - if it's still this popular in three months (and has had a positive influence on her development) it will be super-brilliant.
Sound Touch Here's a game with lots of categories - each has illustrations which, when touched, take you to a photo with sound. The muscial instruments have been of particular interest to Victoria sending her off round the house to get her ukelele or recorder to join in with the sounds and images.
Drawing Pad - the stickers - which one can make bigger or smaller - have been more fun than the drawing . Once Victoria got over her astonishment that scribbling a purple line on a screen hadn't made the end of her finger purple (though she scrutinised it very carefully!!) she's not been tempted back.
Bobble writer - Slightly aggravating when you don't get it EXACTLY right - but the demo is good and you can see where you went wrong because the line goes from black to red.
Pairs deluxe - This pairs game gives you the option of using only a few cards - in which case, the rapturous applause offered when you've finished is more frequent (guess who figured that one out!!)
Memory Fun - all the memory opportunities of 'pairs' without the possibility of losing the cards!!
Silverline Arts Zoo and Farm - This looks interesting to me - though V stays on it for less than 5 minutes!
Tab Tales' Animal Zoo Each drawing of an animal has the name at the top - when you press it it is read, the animals do funny things (tip, move around etc) as well as making a noise (sometimes purely fictitious).
Bob Books She's spent quite a bit of time spelling three-letter words - you can set it so it only accepts the letters in the correct order (as I have!) - or not.
Interactive Alphabet (Piikea) Raw fun - but I have to get her on to it - she'd not go looking for it.
Dexteria A couple of times it has closed down on us but it gives the child a chance to put their hand on the screen and then, after calibration to fit her hand, offers 'buttons' for you to press with each of your fingers. V's not good at it - but I can see it's something she OUGHT to practice! Pinching the crabs is another aspect of this program which is very good - though I detect that with the screensaver and a few days of grotty fingers on the screen increases the reluctance of the crabs to be sent packing....
Splingo (following instructions - flexible regarding number of words and what type of words are used in the instructions given by a child with a good 'northern' accent!!)
Intro to Maths and Intro to Letters - Montessori Good solid education!
Bubbles slide your fingers over the screen to make pretty blue bubbles - then pop them with your finger.
Draw Stars take a picture of mummy and smother it in stars - or wipe them all away
Clean up taxonomy for preschoolers


We have other things which are less useful - but I could keep this blog updated with what is. From what I can see, there are THOUSANDS of apps available. Some we downloaded were useless, so have gone already.

 
+ Raising Down Syndrome Awareness -