Victoria

Ipad

2011-11-07T16:54:00.002Z

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.

annual cardiology appointment update

2011-10-13T11:40:00.002+01:00

The word for the week is 'perhaps' - though it's pronounced 'prehaps' - I love the way Victoria discovers and practices new words!

This morning we saw the cardiologist. This was after an ECG which (although Victoria was decidedly anxious) went very well. Victoria laid down on the bed and said 'I love it, don't I?'!!!!! That information and (wonder of wonders!) a successful pair of blood pressure readings (higher than they ought to be) confirmed what could be seen on the echo - that the kink is causing increasing problems. The cardiologist confirmed that it is the same problem as was revealed by the catheterisation back when she was two. 'Something will have to be done' about it - but not sure when. Just as they said when she was 2, the choices are a) a stent or b) surgery. We're going to have 24-hour blood-pressure monitoring at home - the machine will be sent out by post to us.

I'm praising the Lord that Victoria doesn't find the whole hospital appointments experience cause for massive trauma. She even 'enjoyed' a visit to the dentist last week and asked to go again the next day!!

overdue update

2011-02-20T19:34:00.003Z

I only just realised that it is SUCH a long time since I posted. It was remiss of me not to add pictures of Victoria at the wedding even. so here are some.....

funny girl

2010-03-30T20:51:00.003+01:00

here's a picture of Victoria who decided that she was going to be 'sick' - she equipped herself with a bowl and then decided that since she was using it, the dolly needed to also....

where she's up to with talking is discovery of the present tense of the verb 'to be' - getting her to put 'is' in the right place has been amusing and constructive. Today she began to explore the plural - I guess she must think it all very odd, but she bears with us. A lesson on 'where are the biscuits' ended up with the conversation being moved, by her, towards actually getting her teeth into some! She's endlessly amusing, caring, interested in people, and developing nicely. She's often longing for a cuddle with David who's often not here but she makes do with anyone else who is nearby at the time.

When trying on her wedding dress she was heartbroken at having to take it off again. I have a sneaky feeling she's going to enjoy Saturday immensely and that there will be a very real danger of her stealing the show if Lucy's not careful!

cute picture

2010-03-22T17:42:00.003Z

This afternoon we went shopping. Watching the boys try on their suits got Victoria in dressing-up mode so while they were trying them on, complete with shoes, once home, Victoria slipped into my boots and looked cute. Her speech is coming along nicely - she says 'after' (instead of affer) and bessus instead of fessus (this is the evolution of the word breakfast!). She expressed disappointment this morning when she asked was it Sunday and I told her it wasn't. She's very good at following what is going on. She says 'elephant' very nicely since having watched an ancient national geographic film a couple of days ago. She's just asking Shoanna (Joanna) to do the 'abbit' on the 'lap top' - that's reader-rabbit of course.

It might be that the next pictures you will see of Victoria will be her in her bridesmaid dress (which i have still to sew up - but at least it is cut out!).

various photos

2010-03-21T15:33:00.003Z

This is one of everyone who was home this morning - we had David for the weekend.
this was what Victoria looked like last Sunday evening - after her first ever Cadbury's cream egg! Samuel fed it to her and didn't do too bad a job, considering. We were all thankful that I carry babywipes in the van still, however!
This is dear Julie Barker, without whose help at the start of Victoria's life (she secured, delivered and hired for us a super-dooper breast pump) we wouldn't have such a healthy daughter now.

eyes

2010-02-13T18:17:00.002Z

Writing the title for this just reminds me that I was looking at James' schoolwork file - on one of his maps he had correctly identified the location of Orkney - and wrote the second part of the name 'eyls' !!!

I digress...

Yesterday we had a visit from our dear visual impairment lady. She did a test to show at what point in her peripheral vision she picked up on a tennis ball on a stick being introduced from one side or the other. Her right eye - which is officially the 'stronger eye' was actually not so good in this case - at one point (I was sitting opposite her and could see what was going on with her eyes) - her left eye had wandered in towards her nose and picked up the object approaching from the right side of her face!! Meanwhile she had me (or whatever I was holding) so firmly fixed with her right eye that it wasn't easily distracted. Another thing which became aparent is that whatever the 'refractive error' discoveries are made by the one looking in to the back of her eye, she is functionally short sighted. Last week one particular boy came into the room and she mis-identified him. this is not because, like me, she can't find the right name quickly enough - she ALWAYS gets them right when she looks at the pictures or sees them close enough - but at about 12ft distance she is losing some clarity of vision. All v. interesting stuff!!

I think I understand now that although the experts identify a 'perfect' eye from the outside, there is something of a discrepancy between that and what Victoria does with the information her eyeballs light on.

patching continues, and bi-focals continue because it seems to help make her left eye stronger and less inclined to wander.

so thankful for experts who listen and offer sensible advice. Seems V's functional eyesight will prevent her from driving a car (phew, one less thing to have to worry about!!).

She, of course, is very happy with how things are nontheless.

hustle and bustle

2009-10-28T07:39:00.002Z

With lots of extra folk around (24 for dinner yesterday lunch time....) Victoria is thriving. I didnt' see much of her yesterday but she kept very busy with various other people. We've two families staying to do dancing and Shakespeare - Victoria LOVES the dancing esp. Joseph, from church, who works in a special needs school, was her partner - what Christ-like concern for a little, weak, confused one and what Christ-like UNconcern for his own back (!) !!!
He's gone to do her morning 'schoolwork' session affording me a rare opportunity to blog and deal with emails early in the day.
ON Thursday we have an appointment at St Peter's (it only came through last week and seems rather close to the Brompton one - but since nothing was discovered there, I guess that's immaterial) with the consultant and also the head honcho in the paediatric dept locally. I've been catechising V. each day along the lines of 'what are we going to do on Thursday' "doctor", ' and what is the doctor going to look at' "heart", 'and what noise does your heart make?' "bu-bum", 'and what else is going to happen?' "sticker, tummy". She usually goes on to add some comment about being 'happy' - I HOPE so !!! Thomas or Samuel will come along with me - I think she will feel more secure that way. Ron would have come but there is a house which Lucy and Ben are interested in - which will be auctioned on Thursday - so Ron needs to go there. DAvid would have come but the other apprentice is off sick so he can't have the day off.

Last week Victoria re-joined a hydro group - there's not one this week but back to it next tuesday. It was great to see her confidently walking in the shallow water. So very good for strengthening the leg muscles. It's also a challenge for me since the pool is in a centre for children who are disabled. Walkign down the corridor and seeing all the horrific-looking machinery (you can't help looking at it and sussing out exactly what the child who needs this machine is MISSING on his body....) - all jollied up with stickers etc, of course, and being thankful that the Lord has blessed Victoria (and all my other children) SO much. Though I suspect that the parents of the children whose skeletal muscles don't work or who have missing or deformed limbs still find a lot of happiness by rejoicing in what their own offspring work so very hard to achieve.

We were consider, recently, while staying with friends, that UNthankfulness incurs the wrath of God - that means we ought to be extra specially careful to be giving thanks in all things if we say that we love Him. For some people it is more of an effort than others. It seems to come VERY easily to Victoria who shouts out a loud 'hurray' and raises her left arm enthusiastically, at the LEAST provocation (such as the prospect of a trip to Tesco, for 'schapping'). What a JOY it is to have Victoria entrusted to my care!

working

2009-09-29T15:51:00.003+01:00

Each day part of the plan is that Joanna goes through one book a week with Victoria. here's Joanna modelling how to say a particular word. Victoria observes intently when she has to learn how to say a word - it's fascinating to see her process the new information and attempt to repeat the sound. A game we just started this week is the two-person rhyme which begins 'rat tat tat, who is that, only grandma's pussy cat' . I've always done this with my other children but the effort Victoria makes in order to play this (though her memory is at least equal to theirs which surprises me) is amazing to observe. What a tenacious little person! I wonder what she will do for the KINGDOM with such tenacity!

bi-focals

2009-08-28T17:08:00.003+01:00

Victoria is the first child treated at Cardiff to go straight into Bi-focals having not had glasses previously. She's getting on nicely with them - she uses them for close-work - her schoolwork sessions this week have been very good - one day we even ran over one hour. The patching continues - we visited the local hospital today where a slight improvement in the squint was noticed - Victoria is more readily switching from one eye to the other than she was which means she's more at ease with the left eye.
This morning I got some lovely photos of James doing schoolwork with Victoria - there was one funny occassion when Victoria correctly read the word turned over and James got it wrong!!!
I think that threading the little beads onto a large needle must be easier for her with her glasses on but i think that her left eye gets a bit tired - she stops working to rub it when we've been going for a while. We continue with the experiment hopeful of great things!

recent pictures

2009-08-28T16:56:00.003+01:00

Victoria keeping safe beside the swimming pool in August.
This picture was taken in Cardiff at the optometry department where research into using bi-focals to correct a squint have proved profitable.
This one is, of course, at the wedding of Philip to this charming young lady, Becky on the 25th of July this year.

progress

2009-06-05T09:52:00.002+01:00

Victoria has now learnt how to climb up onto the toilet (no toddler seat!) on her own. She's very pleased with herself and has a sticker chart in the bathroom for such times as she makes her way there on her own and does the needful. Progress indeed. There are more 'bathroom' accidents with V. than with the other children but, on the whole, I think she's doing v. well in the circumstances. she can confidently read all but 3 of the words from the 'babys' first picture book' (ladybird) and with the proviso that she will need to keep practising 'shoe, orange and tap' we will move on to the next set of words (from the second picture book). We had a go at threading beads again today - first time for over a month. She concentrates VERY intently and doesn't willingly use two hands together. The needle is often half-way through and she lets go of the pushing end before grabbing hold of the pulling end so it drops out again! She holds the equipment about three inches from her right eye and pokes her tongue out a little. I just bought a video camera (my old one packed up about 3 years ago - when it was less than a year old!) so hope to set up to record some of the things I do with V. - It might be useful to encourage us in the future and also might be instructive for others with younger children.

Patching continues - though I think she is more mischievous when she has her patch on! We go to the optomotrist again next week and to Cardiff in August.

escape

2009-05-20T19:06:00.002+01:00

This afternoon, when we got back from shopping, the door was open - but that was OK because Victoria was outside with James. His suggestions that she should come in didn't meet with her approval. since neither of them was happy I thought it best to take V. on a walk. I asked James to get the pushchair ready to put her in it. Not only did he not get the pushchair but he also didnt' see that Victoria wandered out of the front gate and down the lane. I don't know how long after James had given up supervising I asked where she was and whether she was ready to go but Richard, James and Joanna tracked her down to the neighbours where she had walked in through the gate (which is normally closed) and was found in the arms of the man there! This is a sobering reminder of the fact that Victoria needs watching constantly. i've toyed with the idea of having her on some kind of picket.... Strangely, my friend Tracie in Birmingham emailed me to say that her daughter had gone missing today. She had called 999 to report her missing. It turned out that she was across the field and one of the bigger children found her. It would be handy if there were dogs trained to tag children who might wander (there is a scheme in the USA - mainly for autistic children) - or failing that a sat-nav tracking device.....
Well, as Laura Ingalls-Wilder's dad used to say 'all's well that ends well'. The moral is that she must be supervised by someone at all times.

under the weather

2009-04-23T20:57:00.002+01:00

Poor old Victoria has been a bit under the weather. A cold comes and stays quite a long time, it seems. Exema (sp?) on her leg accompanied the usual cold symptoms which (thankfully) this time only included ONE night of croup. The second night she was in with the twins - Thomas prayed for her and she didn't get croup (now why didn't *I* ever think of that....) while she was in there - nor did she the next night. Two days of floppiness and not eating (as well as complaining about having to drink) are behind us and today she ate dinner - though that was late. She slept in until 7.30am and her morning nap (at 10am!) carried her through til after 1pm! What a life! I'm hoping she's back to full strength tomorrow as I've lots of things I want her to do in her schoolwork session.
At the eye clinic recently I mentioned the Cardiff research into bi-focals. The Dr. asked me when the research was to be published. I said I didnt' know and she should look on the internet. Maggie, from Cardiff, wrote to me today to say that she had written to the eye clinic regarding V. and bi-focals and she'd got no reply. Further, the research HAS been published already, so the Dr OUGHT to have found about about it....
Hopefully we'll be back to Cardiff in September by which time Victoria will (hopefully) be doing more schoolwork-type stuff and bi-focals will be of use to her.
Today Victoria had a bout of longing for David, without being requieted. Well, she got over it in the end. Plans for an enclosed garden area into which Victoria can wander without escaping are in hand - so that's exciting. Thinking of plants which will be interesting / colourful / scented / fruitful and low-maintainance is occupying 2% (approx.) of my thought capacity right now. SAmuel is drawing up the actual plans. No idea when it might begin. Plans for a climbing frame are occupying a further 5% of my thought capacity - I'm tempted to go for the Costco £1200 model - all wood with lots of fancy extras. prob. will settle for the ELC version (though I'd sooner get a second-hand one...)

advancing

2009-03-31T19:02:00.003+01:00

Following a week of having 4 extra children in the house Victoria (although she has missed a few of her morning sessions) I've noticed that her speech has continued to develop. Today she amused me with requesting a biscuit and then going on to indicate 'wait'!
when she was looking through her words (from the old Ladybird first picture book) she read more of them then I thought she could.
I'm now turning my mind to how I can teach her Bible truths and a book which I bought at a recent Tedd Tripp conference seems ideal as a basis. The only problem is that it is decidedly Baptistic besides missing out essential stuff about communion and the church. Our pastor has, very helpfully, highlighted areas in which I can use the picture-prompts and re-define them as well as other areas in which more information (and more pics) need to be added.
I intend to use the pics as prompts (because visual memory is good for children with D.S.) for catechism questions. Over the Easter break I'm going to make it a priority to sort out these - perhaps photos stuck on card with writing on the back. I had been using some Bible picture flash-cards but the easy ones (which v. knew very well) went astray on that day when she wandered off to our work-place and messed everything up...
This afternoon I asked (a reluctant) Joanna to take V. out on the trampoline. She was plonked onto the little one and folded herself over looking a bit despairing. I called out that it was the big trampoline she wanted to go and the look of joy on her face when she got there confirmed it. When she was in, a bit later, and I was telling someone in the house about it she looked knowingly at me (and said/signed 'big trampoline'). Thomas, whilst pleased with this progress is frustrated that she doesn't SAY more - all we can do is keep the conversations going and look forward to the time when she gets it all together.

reading

2009-03-04T09:16:00.003Z

After months of working with Victoria on the words from the ladybird 'Baby's first picture book' - first with the pictures which had words at the bottom with which which Victoria had to match the laminated copies of the words. Next with a photocopy of the picture/word with the word folded to one side and the picture on the other (so she could see only the word but could flip it and check she was right) then on to words in sets of four on one card. Today I gave her the chance to read what I was showing her first and she read3 or 4 of them, quite readily. One of them she tried something else first and then (having realised it was wrong herself) corrected herself to say 'flower'. I was VERY excited (I seem to be developing my excitableness...) - I even got her to look at a set of 4 word cards and select the one I asked her. I guess the next thing woudl be to ask her to give me two word cards which I ask her for. However, for the time being I think this a major step forward.

Yesterday I cut out circles, large and small, and hearts, also large and small. After laminating them I had Victoria sort all the hearts into one basket and circles into another. On Saturday we were told that words which you train a child to say will soon appear in everyday language - so I hope she will notice circles around her through the day. The shapes were in 5 different colours so we can go on to 'give me the big red circle' - and also proceed to have phrases which she can learn to read, then match (or find the phrase which matches a selected shape). I'll try to restrain my enthusiasm and not push her too fast.

today I hope to make a dress for victoria and a matching one for her little friend who, although younger, is the same size - I WILL take a picture and post it.

cute

2009-03-02T13:01:00.002Z

Yesterday, on the way back from a wonderful day out (in which Victoria spent a lot of time having fun with a little friend of about 2 years old) the current 14-y-old lad wanted to hold Victoria, knowing she would go to sleep (everyone wants to hold her when she's sleeping - oh, provided she has a nappy on of course....) and when we were nearly home I heard in a deep voice and satisfied tone 'you know, Victoria has a very sweet snore'....
Yesterday, too, Victoria went to sunday school for the first time - she loved it and James made sure she didn't cause too-great disruption.
The day before that I had a very exciting time at a day conference done by D.S. OK. Lots of information was dished out and the power-point slides were reproduced (almost small enough to require a magnifying glass!) with space beside for writing on . Now all that remains is to trawl through all the pages and implement what is appropriate now and DO it!
Earlier last week I had a lady from Basingstoke phone me who is thinking of home-ed for her little lad. when we get together that will give me a further opportunity of learning, by teaching, the very important stuff about reading, writing and speech. I think that the most important word of the day was 'stability' - to have the whole body stable (which is no mean achievement for someone whose muscles are like over-stretched elastic bands...) is key to SO MUCH - not just walking. Ideas to improve stability led me to become convinced that a climbing frame would now be very useful for Victoria, so I'll aim at getting one sooner than later.
Also last week, on Friday, Victoria 'vanished'. She was discovered in the room where we do schoolwork - she could have been 'anywhere' since the door was also open. Within half an hour I was at Mothercare selecting stair gates to limit Victoria's roaming either outside or beyond the bathroom. Now all we have to do is remember to keep the doors closed when she's up. I plan to make some 'no entry' signs (like on the roadsides) for on the gates and hope that Victoria will learn not to go beyond such signs. If that becomes habit it will make it easier to keep her safe at church where she wants to wander off through doors and has no sense (like other toddlers in new territory) of keeping near family.
What an action-packed existence Victoria has, Samuel just came in to tell me that she's really getting the hang of putting three words together - signed or verbal - in order to make a request!!
In the early hours, while Victoria was sleeping in my bed, I was listening to a Dan Barker v Doug Wilson debate on the evidence for the existence of the Triune God. The comment which Dan Barker made that 'there can't be a God because there are children who suffer' ... 'anyone who sees children suffering in hospital' must know that. I looked at Victoria and wondered at the mystery of the incalculable JOY which Victoria not only HAS but also IMPARTS - whether this is 'because of' or 'in spite of' could be debated - however, the reality can't be disputed. My experience (from the inside of hospitals treating suffering children) is that there is a greater tenderness on teh part of staff and parents and a greater thankfulness and joy (rather than stubborn resistance to thankfulness such as Dan Barker demonstrates) from everyone than seems reasonable - but there it is!

vocabulary

2009-02-08T07:55:00.002Z

My impression is that 90% of what Victoria has said over the past 3 days has been 'no'. Evidently there have been more negetive things to remark upon than positive. It's getting tedious, I hope she soon moves on to other words. This mng. I asked
q. 'can you say Lucy'
a. 'no'
q. 'can you say Victoria'
a. 'no'
q. 'can you say Daddy'
a. 'no'
q. 'can you say James'
a. 'no'
q. 'can you say no'
(pause)
a 'yes'.

so at least she was following it!

snow

2009-02-04T18:58:00.002Z

Victoria spent Monday enjoying looking at the snow. I didn't let her out because I thought she'd get too cold. Tuesday she made it outside, in the sunshine, briefly. Today she went out and rode on a sledge - then she had a go at walking about until she slipped over and bonked her nose - carried in by Joanna, blood all over her lower face, she looked a bit of a mess. She recovered and sat with her swollen and shiny nose watching her signing DVD and forgot all about it.
Snow is still lying on the ground and with the temperature only slightly above freezing it looks like it won't be clear tomorrow either.
Having looked at the price of the Montessori colour tablets I had a go at making something to do the same job. Today we had a go at them and Victoria didn't do too badly. when I sit down with Victoria and follow the instructions however, I find that Victoria hasn't got things quite as straight as I imagined. She's good at saying 'purple' - maybe it is her favourite colour too!

excuses

2009-01-30T15:39:00.002Z

I have been aware that I needed to update- my excuse for leaving it so long again is that I've not really been well enough.
Victoria is getting along nicely although a recent run through the developmental check-lists was a little discouraging - mostly because she doesn't SAY much. I tell myself that she follows conversations well and communicates (finding a bit of biscuit she left yesterday she just asked me, quite effectively, whether she could have it) so I assume she understands a lot. The report from the recent speech-therapy visit (which went a bit better than the September one, but not much!) was also depressing. The lady who is of most help right now is the visual impairment support lady. She told me she knows of a group which meets about 10 miles away - it's a group speech-therapy thing. I hope to find out more. I am painfully aware that parents with a child who has d.s., if they have NOTHING else ALWAYS have a speech therapist. A group opportunity will be a good sight better than nothing. Meanwhile I continue to follow the guidance from the Down syndrome Education trust and otherwise do just as I have with the others and hope for the best.
While I've not been well Samuel has been doing the morning session with Victoria some times. She seems to enjoy that. Advice from the visual impairment lady (Cathy) has caused me to re-do the names in Arial so I'll need to laminate them. It will be interesting to see if Victoria finds them easier to read. meanwhile I have finally added sentences to the book of pictures of family members - we'll start on reading that tomorrow. An action-packed weekend of visitors will give Victoria lots to entertain and instruct her - she LOVES people.

listening

2009-01-14T18:07:00.001Z

today at dinner we had carrot-and-celeriac salad. Towards the end of the meal there were some allusions to the similarity between the salad and hay. Asked what was in it I listed the ingredients : raw carrot, raw celeriac, mustard and yoghourt. Victoria was paying attention and began making 'roaring' noises at those within reach - it took Ron to re-wind the conversation and discover that it was simple matter of equivocation which was the cause. What a hoot!!

Off to Cardiff tomorrow - with the reading stuff (today she read NO names, I wonder if they are too small.....).

speech therapy

2009-01-13T14:00:00.002Z

Tina seemed to be bending over backwards to convince the youngster who is assessing Victoria in her capacity of speech therapist that Victoria isn't as stupid as her September report indicated. Victoria still didn't either warm to her or easily understand what she expected of her. I confirmed that I didnt' want weekly input from this person (though she did seem to indicate that it could be her 'or someone else') and she is going to ask her supervisor (who, I hope, will be the lady I had a good chat to after her lecture on speech-therapy services which I attended a few months ago) whether it is OK to just assess at 3-month intervals.
I'm glad it's over but we're not really any wiser. she suggests that the sounds we should begin working on are those which Victoria CAN'T do (like 'k' ) and blend them with any vowels. I thought there might be certain consonant/vowel combinations which would LOGICALLY be a good starting point. It's galling when you just are not understood by the person you are trying to communicate with. it makes me very thankful for having had Tina, who always seemed to understand where I was coming from and supported me perfectly.
At least Victoria showed perfectly well (and with astonishing swiftness) which, of three pictures showing vowels, she was asked to point to. she even went back to the book afterwards and named/signed some of the pictures.
Victoria will be expected to learn some new signs for verbs next, once we recieve the promised list from the speech therapist.

precious moments

2009-01-10T13:31:00.002Z

Ron and I went to costco this mng. Victoria came along for the ride. She enjoyed seeing all the things and from time to time would wave her arms about and interpret what she was seeing. On the way back I was holding her hands to make them warm and she started singing . The first two phrases seemed to be about being warm (or maybe her hands being warm) and she developed the theme for the next 10 minutes. The range of notes she used was from Doh to Soh - all fascinating stuff. I was reminded of an 'Ealing Comedy' in which the bad guy was masquerading as the Bishop of Matebeleland and offered a mock quote from Scripture in the local lingo!! I can't say it often enough, Victoria is the greatest blessing this family has ever had!
Still in the habit of pulling out the hair on the right while she sucks the left fingers, it really was looking VERY wild. Today after Joanna bathed her and washed her hair I made a fringe and trimmed all round so that it was less imbalanced. Before she went to bed last night I sewed up her sleeve so she couldn't pull out hair - will have to do that on all her PJ's I fear, if she is to develop proper HAIR any time.
She's having a late sleep now after all the excitement of the morning.

expanding vocabulary

2009-01-01T08:59:00.003Z

After visiting friends with a dog Victoria can now, when she thinks about it, say 'dog' - rather than 'oooh' when she sees one. Today I noticed that she said 'don't' when I threatened to tickle her - I daresay she's been saying that to James for a while since he often does, or threatens to do, things of which she disapproves.
As for all the other things she says, well, I'd better get making a list because next Wednesday we have a visit from the speech therapist who was so very negetive back in September.
Victoria has really enjoyed all the visitors we've had over Christmas - we've got more today and more again (including small people) on Saturday.
Monday sees us all with our noses back to the grindstone and since all the details of what I need to be doing with Victoria over the coming weeks is not yet are not finalised I'll be needing to do some more reading-up today.
Photos are being printed for which I have to type up text to make a 'book' for Victoria which will use some of the words she has been workign on each day (including many of the family names).

Evolution

2008-12-24T18:36:00.002Z

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.

goodbye portage

2008-12-18T19:15:00.003Z

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.

Ice Skating

2008-12-06T08:14:00.002Z

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.

fiasco

2008-12-03T18:03:00.002Z

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.

London

2008-12-03T07:14:00.002Z

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.

patched up but happy

2008-12-02T09:55:00.000Z

patches

2008-11-29T10:20:00.002Z

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!

snow-suits and eyes

2008-11-22T11:09:00.002Z

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.

reading etc

2008-11-15T07:39:00.002Z

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!!

Today

2008-11-06T08:15:00.002Z

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....

2008-11-06T08:11:00.000Z

Victoria with her favourite brother - David.

and another one...

2008-11-05T18:47:00.003Z

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

2008-11-05T18:35:00.002Z

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!

walkies

2008-10-18T09:06:00.002+01:00

Our daily walk has taken an upgrade. Via ebay (and very kind friends in Coventry who collected it from the seller then arranged to drop it of here....) I now have a snazzy emmaljunga pushchair with pnematic tyres and excellent springs. We'd not gone more than 100 yards yesterday afternoon before Victoria was joyfully testing out the springs! The main reason for buying another puschair at this late stage (she's 3 and a quarter now...) is that this one can face me. In the excellent A.T.puschair Victoria and I are facing the same way and can't work on refining speech sounds because she can't see me. Joanna and James also joined us on yesterday's constitutional. Joanna brought along a little dolly-pushchair which Victoria was raring to have a go at but had to wait until a strictly off-road section of the route. She couldnt' drive it straight and at one point even headed off back in the direction we came in. She had a whale of a time but when I decided that enough was enough she was heartbroken. James took it all but the final 200 yard back home - where Victoria got a go again. while we were walking she would stop and hold on with one hand and tell joanna there was a car (when there wasn't!) she waited until such time as the imaginary car passed, meanwhile holding on to the handle with one hand and standing at right angles to the pram (just like I do when waiting for a car to pass!!!) - what a hoot - I could just spend all my day watching and playing with Victoria - she has such a lot to teach me!!
She's working on her efforts at communicating though the signing is very inaccurate and it is a struggle to decode her - bless her, she's persistent and patient. Sometimes she does give up and other times she settles for something other than complete comprehension.

In this last week she has begun to emulate a trend in the house when the phone rings. She tells if it is 'David's phone' or just 'phone' and puts her finger and thumb, clasped, to her earhole. She gets up and attempts to beat whoever else is racing to pick it up - she actually DID pick up the phone (I am told) when she happened to be seated in office when it rang - mercifully she picked up the reciever of the phone which wasn't ringing - she said hello into before being discovered!

A newly discovered ability to reach the door handle and therefore open the door means that I shall have to follow the advice of a dear lady from N.I I met who had a large 'no entry' sign on the front door to prevent her repeated attempts at escape.

Currently we are working on building up her memory with some folded cards which have pictures on the inside of children doing various things. We've signed the referral form for someone to come and assess what might be done for her to compensate for her poorly functioning eyes in connection with education - so that shoudl be interesting.

locks

2008-09-24T11:32:00.002+01:00

This morning Victoria discovered that there was a bolt on the inside of the cloakroom door. Plaintiff cries of 'wee' coming from the inside alerted David to the situation. Samuel discovered that the window wasn't open so a rescue attempt through the window wasn't possible. Victoria, on being encouraged to open the door, did fiddle about with the bolt - but to no effect. Ron came to the rescue with a crow-bar! Victoria seemed quite amused to see ron's face through the crack created by the crow-bar. The door-frame now needs replacing and the lock will be moved higher up. Victoria was told that it was naughty - but whether she will try it again, I couldn't count on. Actually, she's done rather a lot of naughty (or adventurous?!) things today - including (shock, horror) walking right through the kitchen to the utility room!

it was a relief when she went for her morning nap.

At Ikea yesterday I bought Victoria an easel with a blackboard on one side and whiteboard on the other. AT least she can access this without running the risk of ruining her clothes. The other children have, so far, used it more than Victoria has.... I did read somewhere that children who have unlimited access to writing/drawing materials learn to read earlier - something about the processing of the information occurring on the paper in front of them I think.

growing up and results

2008-09-20T08:06:00.002+01:00

This picture of Victoria was taken just after she had chicken pox - I took a series of 6 pics in which she looks very grown-up.
Things which Victoria likes doing right now include plucking on the strings of the balaika (which Richard is attempting to learn to play). She pulls on a string and then listens to the sound as it dies away. Yesterday she signed 'joanna cuddle' though the 'words' confused people so it took some time to figure that that was what she was saying...
A new batch of (secondhand) books arrived in today so she sat checking them out before returning to her balalaika practice this morning.

The speech-therapy assessment report came through earlier this week . It was not very encouraging and when I go to the 'introduction to our services' day on Friday I shall ask whether they have anyone who has informed themselves of the research done by the Downs Syndrome Ed. Trust in Portsmouth. If they haven't I don't see that they can be of much use and and prob. will be somewhat of a frustration if we have someone regularly (as they propose after Christmas).
In spite of my 'free' week before starting up schoolwork, I haven't sat down and worked out a plan for what I am going to do with Victoria - consequently all the ideas are bouncing around in my head and I am trying to remain aware of all the potential learning opportunities (and not just concentrate on speech/communication) which come up throughout the day. I DO need to formalise it a bit so that I don't miss out anything important though. I've got lots of resources (in the way of 'stuff') but without planning I could fail to get the best out of them for Victoria.
I re-introduced some word/picture matching this week - from a cut-up ladybird first words/pictures book and she wasn't, at least, digging her heels in like she was last time we tried.

speech

2008-09-10T09:55:00.002+01:00

while we have been away the biggest improvement has been in Victoria's speech. She enjoyed hours and hours on the beach (though we had to watch her - she has an obsession with shoes and wandered over to anyone who had removed theirs and attempted to make off with them on her feet...) and in the sea. She's still not quite running but is getting sturdier on her feet.

Victoria has learnt to say when she needs to go to the toilet and has been perfected an extended version of 'no' - it sounds like 'no-ah' and mostly is loudly produced!

The last week of our time away was sharing a bungalow with another family whose daughter (18 months older than Victoria) also has d.s. One of the delights was to hear the other little girl talking (yes, you could sometimes pick up the words she was saying) to Victoria and Victoria waiting for her turn to reply - they both stuck at it surprisingly long - it's great to see someone a little bit ahead of Victoria. Another of the delights of that week was the 'special needs' parents coffee-morning. A great deal of encouragement was offered in the face of REAL trial and difficulty. The fact that our 'special needs' children are fundamentally 'special' in their role in the body of Christ and that they can contribute in a way which no 'normal' person of any age could BEGIN to was what we were all left with. I was moved to tears when we were told of a dear lad who is autistic responding to the news of the advance to the Glory of a dearly love Aunty with a thrilled 'wow!!!! - so she's gone to see God!!!'. Oh for a faith like this.....

hols.

2008-08-01T09:03:00.002+01:00

Victoria enjoyed the trip to Rora house - meeting lots of folks and the physical challenges of walking on ground which was mostly hilly and uneven were a couple of the benefits. A week at home and we're off again - for the seaside-stint. Last year she wasn't walking so will need much more careful observation this year, in case she wanders off amongst the crowds.
Victoria's hair is much thicker on the left of her head - and has always been longer there. On the whole she has seriously 'bad hair' (it's congenital!!!) and I've resorted to trimming the long, thick side - and now I think it looks worse..... However, she doesn't mind, so it's not a big concern - just a little 'distinctive'!
The cute little purple crocs which she has are very good for her - they stay on and she can even put them on herself.
On our daily walk Victoria has begun to do a bit of walking when we are on pavement and is enjoying it. I've noticed that her legs are getting stronger and she can stand up from being on the floor in a much more stable way. We're still aiming at getting her to jump but her attempts continue to be 'merely' rising up onto the balls of her feet in repsonse to 'one, two, three, jump'.
When I was working with her this morning I was showing her pictures and trying to get her to say the words - she tries very hard and I think that the speech-therapy assessment in September will show her to be quite a hopeful case. We've got to try and remember to do the makaton signs for her - it's easy to drop them and 'understand' what she's 'saying' but the signs DO help us to distinguish between one word and another where they sound the same!
I was able to spend some time talking to a former occupational therapist (now a h.s. mum) while we were on camp - she gave me some brilliant and usable ideas to incorporate into Victoria's daily routine and while I'm away I'll be working out a (hopefully) balanced plan to implement with Victoria in September.
Meanwhile Victoria will have the sand and water to explore each day, beach-mission songs to learn and the field to explore in the evenings so will be kept learning and growing in an unstructured way over the coming weeks.

hands

2008-07-12T07:12:00.003+01:00

Victoria woke up around 3am, crying. I took her to the lounge where she continued to sleep. I didn't. When she evidently had an unsettling dream and began to cry I laid my hand on her face and she was instantly quiet. Can the Lord, who MADE the hand, be less willing and able to comfort His distressed, precious ones when life is a 'nightmare' for them? My love for Victoria has to be at least a thousandth of His love to me. I was reminded that He who made us never sleeps - so He's always ready to minister to us - wow!

Doctors

2008-07-11T13:45:00.002+01:00

I took Victoria to see the GP this mng. He confirmed that is OK to give Victoria the blood-pressure medicine which has, in the small print, 'do not give to children'. He also said that the cardiologist is a jolly good one, as is the surgeon (who our GP was in general medical training with) and that we need to have no worries about the plans for surgery whether it is sooner or later. Not that, with the Lord on our side, we had or ever will have, cause for worry.

eyes

2008-07-09T07:31:00.002+01:00

I see I didn't give an update after the orthoptist appt. on Friday.
Her left eye behaved much better this time and the difference between the two being not so bad as previously thought, Victoria is spared the trial of a patch for now. Regular 3-monthly checks will continue DV. I think that the daily ride in the pushchair gives her lots of long-range exercise for her eyes (except when she's too tired to keep them open!) so we'll carry on with that as a therapy (!!).

clearing

2008-07-09T07:24:00.002+01:00

There are only small traces of the spots left. Yesterday mng. after a couple of treatments with epsom salts and coconut oil (to draw it out) I removed a nasty looking thorn or splinter from her finger. She hadn't been complaining but it is at least two weeks since I noticed a nasty looking bump on her finger.
New words I noticed she can say include 'blbl' - for apple. If I get her to say 'a' first it becomes 'a bl bl'. It seems she can also say something (at an approriate point in the day) which sounds like 'my tea' - as well as an identifiable form of 'dinner'. She's developing 'terrible-two' tendencies which we are all attempting to nip in the bud. One of the worst things is that she has taken against certain family members and if they are required to take her to the toilet or feed her dinner she objects vociferously.
Victoria likes to play with the compare-bears and yesterday Timothy was helping her to sort them out into their separate colours - she amazed me at her willingness and ability (though I don't think Timothy was aware of the value of the achievement) - though he was congratulatory.

pics

2008-07-02T10:15:00.002+01:00

Here is Victoria this morning - you can still see some of the spots. Samuel was attempting to read 'song of Roland' but in the end he collapsed into uncontrollable laughter because of Victoria's imitation of his story-telling which she felt she needed to do in an eyeball to eyeball style.
This one was taken last month - we re-discovered that cute little hat which Victoria enjoyed wearing.

progress

2008-06-30T06:41:00.002+01:00

Yesterday the spots were worse - mostly on her darling little face. This morning the face is a bit clearer and her eyes less puffy. She's grumpy though. At 4-ish I collected her from Joanna's bed, took her in mine for a bit where her noisiness was disturbing Ron so we ended up in the lounge where, in time, Victoria eventually slept. There was a pleasant relaxed atmosphere at 6.15 when I woke up as the children were just finishing breakfast with the sun shining in a very holiday-like mode. Today is the last of the Leatherhead group sessions which we won't be able to attend on account of the spots.

Oh I do like to be beside the seaside.....

2008-06-27T11:49:00.002+01:00

this is Victoria on the beach at Llanfairfechan - before she got spotty! I made the outfit just before we went away.

pox

2008-06-27T08:06:00.002+01:00

Having kept Victoria away from the few other children at the Brompton she's now broken out in spots. She's in good spirits but I think we won't be able to go to the eye appt. this afternoon and we had to cancel portage yesterday.

Blood pressure

2008-06-26T07:57:00.002+01:00

We had a pleasant encounter with the cardiologist yesterday. The four-limb blood pressures are pretty much the same (and she didnt' have an echo or ecg). The raised blood pressure caused by the narrowing continues to be a concern. The surgeon suggested that meds. until she's 6 and can have a stent, was the way forward. I told the card. that I wasn't too keen on long-term meds. He is of the opinion that nothing other than surgery can solve the prob. but has prescribed some medicine which might lower the blood pressure - though he's not hopeful. The pharmacist advised me to read the small-print (which, of course, I DID) and seeing that it says 'not to be given to children' and then lists a load of side-effects, I made an appointment to see the GP. I've to wait for 2 weeks - either he doesn't work much these days or he's VERY popular! We are to go back to the Brompton in December. I hope that by then the surgeon will be of one mind with the cardiologist, if that is the will of God for Victoria.
tomorrow we get the eye-test
today we have portage and are enjoying the sunshine.

in praise of stacking cups

2008-06-25T07:19:00.002+01:00

Generally speaking I don't like plastic. Stacking cups, however, are hard to imagine made from any other material. They are fantastic. To watch Victoria figure out how to build them up into a tower or how to stack them into one another is truly fascinating. She will try one which is only slightly too big evidently confident that it WILL fit - they she finds it won't . Those which are OBVIOUSLY too large to be attempted are attempted in a more cursory manner. I don't ever remember sitting with any of my other children while they painstakingly stacked all the cups up but I wish I had! The developing mind is truly a wonder and I feel very priveledged to be able to help this particular one.
Off to the hospital today for checks and then to the Natural History museum so that Simon can, at long last, see the rocks and minerals gallery.

Ears clear

2008-06-20T15:59:00.003+01:00

The hearing test went well. When we went in to the room we were the only folks there. When we stepped out there was a collection of people on the seats in the corridor most of whom expressed facial pleasure at seeing Victoria walk out of the room and some of whom said 'what a lovely little girl' and such-like things. I remember reading a while ago that people with D.S. don't pick up subtle nuances of social interchange and can fully imagine that (if this verbal appreciation from total strangers continues) I will hear Victoria responding 'yes, I am aren't I' in the future. Now if I can train her to add 'that's the way the Lord has created me, for His Glory' - that WILL be something!
The visit from the physio yesterday was as of limited value as always - though I have some sheets of paper showing what people are normally doing at 2, 2 1/2, and 3 years respectively. The portage session was of use - it helped me feel good because I have not done any 'work' with Victoria since I got back (and did precious little structured work with her while I was away, come to think of it). The recent walks (using the Bob pushchair - thanks Tonya!!!!) have been testing Victoria's balance and strengthening her tummy muscles - she has to try and stay upright or at least correct herself each time we go over bumps and this should help her coping with steps (shifting her weight from one leg to the other). We choose the off-road routes and as anyone who knows me will realise, we DON'T go slowly. The scents which strike our noses (though we can't always see where they are coming from ) are particularly delightful - then there are always dogs to see. The next appointment isn't until Weds - the cardiology check. No spots, though I heard from a friend that it is not uncommon for people with D.S. don't manifest symptoms of chicken pox and poss. other things. That makes me feel a good deal better about not opting for vaccination....

spots

2008-06-19T08:43:00.002+01:00

No, there are no spots - James' are clearing up and we are on target to see the physio and portage today. Just have to make sure that Victoria gets a sleep this mng or she will be no good for portage.

chickening out

2008-06-17T10:52:00.002+01:00

David took James away for a long-planned short camping expedition for his birthday. On the way James wasn't well and when they arrived it became apparant that there were spots. From the description I diagnosed chicken pox. They came home a day early. James isn't too bad though, it good-ish spirits and seems to be getting over it.
The fact that there are still 5 more appointments for Victoria in the next 10 days means we are watching carefully torn between identifying spots and having to reschedule and hoping she won't get it now - though it would be easier for her to have it now than when she is older.... What a good thing it is to know that we are SAFE in the hands of a Sovereign and loving Father who has everything under His wise control.

appointments

2008-06-14T18:28:00.002+01:00

Back from a trip away to enable the twins to do their O levels and then a holiday by the sea where they could all variously climb, walk, swim, and kayak (beside enjoying the fellowship of valued friends) Victoria is all set for a parcel of appointments coming up over the next two weeks. Hopefully it won't be derailed by whatever-it-is which James has 'gone down' with. James was taken away by David for a birthday outing but he's not been well and it appears that red spots are manifesting themselves. It sounds like chicken pox - in which case it doesn't bode well for Victoria. She's got a cold - in fact is getting over it. The latest bout of croup wasn't as severe as the previous one but it went on most of the night and wasn't shiftable by any of the usual remedies. I did think that I would have to take her to A and E in Bangor but was, mercifully, spared that as it didn't happen a second night. If all goes well, she will have feet, eyes, ears and the usual cardiac checks between now and a week on friday.
Victoria now routinely puts two signs together with understanding as is going on more frequently to put three together. Working on getting her to combine 's' and 'ee' when we were down beside the sea was very entertaining - as was trying to get her to make her mouth into the right shape to blow the balloon off the palm of my hand. She looks so very intently into my face - she has absolute trust and doesnt' think I'm having her on or giving her misleading information - she just has a go at copying me. What a responsibility!!!
David arrived in Wales on Thursday and was keen to take Victoria in the back-carrier up a nearby hill. When they were near the top DAvid gave V. a dandelion telling her she could give it to me when she got back. The look of joy and satisfaction on her face as she walked across the room and handed me this irretrievably flaccid dandelion was very memorable. I almost felt like preserving it, but didn't. David had only said it once and she had remained single-minded about what had to be done with this flower. I think I've a lot to learn from Victoria!

Little animals

2008-04-13T16:07:00.002+01:00

I think I will have to develop more tolerance. Glad that I've not been out and about VERY much since Victoria was born I am disturbed to have noticed in a couple of recent (non homeschooling) adult conversations an attitude towards Victoria akin to how one might speak about a small pet animal. I'm sure they MEAN well (one of them is even a father of a 20+ y-old son with ds - he was put out to state care and has ended up in a 'sheltered' house with others similarly afflicted) but I have to keep a tight rein on my tongue and my attitude. I daresay it is good for me.

As far as I see, any of US could have been blessed with an additional copy of chromosome 21 and the fact that medical science has progressed such that basic re-plumbing on major organs - such as the heart - enables such people to live healthier lives these days - gives us more challenges for longer BUT when I look into Victorias eyes I see a person. Limited by the hypermobility, oversized tongue and poor auditory memory but extended by honest affection and willingness to love, forgive and forget.
I'm convinced that as her understanding increases she will be able to express something of her relationship with her Heavenly Father. Right now she's picked up someone's Bible and sitting on the sofa turning pages. Stopping at one she will make heartfelt singing noises - which I'm sure the Lord appreciates!!! I suppose most Christians don't really know what to do about 'disability' because their version of 'the faith' is heavily dependant on an intellectual apprehension of and accurate verbal expression of certain doctrinal truths. As for Victoria, she'll just get on with blessing others with her smiles and songs as an expression of her joy in the Lord. And after the ressurection she won't be limited by the effects of the fall - and will be totally intelligible and no less joyful.

orders

2008-04-08T18:00:00.002+01:00

Victoria has learnt to get someone's attention and then pat the ground next to her when she wants them to come and sit beside her - very endearing but perhaps the thin end of a wedge which could end up with her ruling the WORLD! She's got almost all the teeth she ought to have - at long last - and uses them very well. Eating has been pretty good recently. I still, largely, keep her off wheat and cow-dairy and too often forget to give her her vitamins.
The work we are doing in the morning has a heavy emphasis on discriminating between big and little and the children are aware of that and help her in this area throughout the day. She can now drink out of a normal beaker without (always!) drowning herself but still doens't get much opportunity to feed herself with a spoon because much of what she eats isn't very compliant at staying on the spoon.
We're resuming the language group a week on Monday and we are waiting to hear from a speech therapist who will evaluate where Victoria is up to. I've arranged an afternoon workshop on the subject of music in the development of children with D.S. which Judy Barker from Milton Keynes is coming to do - I'm looking forward to that because it will help parents to realise the importance of music as an aid in gross motor, fine motor, cognitive, social as well as being valuable fun!

hectic

2008-04-03T06:36:00.002+01:00

Victoria is still sleeping (as are most of the others...) and so I thought I'd better update here. We had a delightful week in Wales where we managed to get out for a walk in the hills a couple of days and saw REAL sheep (rather than only on the pages of books) and lambs. Chicks have hatched at home and have been in the lounge (until yesterday when they got too smelly and were evicted) which provided great entertainment for Victoria though she didn't much like holding them. While we were away Victoria had lots of new people to relate to and her communication skills were developed further. STill not many real words but she was particularly intrigued by the baby also visiting and she enjoyed imitating the sounds the baby made.
Now Lucy is home Victoria is re-establishing a relationship with her and doesn't view her as quite so scarey now. A friend of Lucys who works as a classroom assistant in a special school in Leicester was visiting most recently and taught us a few more Makaton signs as well as being very 'at home' with Victoria. Now the room-tidying and change-round continues and I've discovered lots of old tapes which I'd forgotten about. The books go tomorrow so I've to list the rest of them - so it's all 'go'. Victoria new adventurous streak means that for the time being she is fastened into her pram with some things to do - there's no telling what mischief she might get up to while there is no one to trail her and the seeds on the windowsill are a particular concern!

results

2008-03-13T06:45:00.002Z

Yesterday's visit to London saw us arriving bang on 11am (I DO so like getting there on time!) but we didnt' see anyone until almost 12. The first thing was to have 4-limb blood-pressures for which Victoria sat beautifully and didn't complain (therefore they got a good and reliable result). Then we had to wait again before the echo. That took quite a long time too - the important bits to look at seem to be particularly hard to get into view - and it was confirmed again that the heart repair was holding up to the pressure. It was the lady registrar who did this echo and she said that it was not certain that surgery wasn't in the offing. The information gathered yesterday (including and ECG) will be discussed with Dr Magee - who wasn't there yesterday. We have another appointment in June.
We were the last people out of the place and headed for the Science museum where we looked at how a safe combination lock works - v. interesting. I had Simon and James with me and it was rather nice to have them and be able to pop into museums to see specific bits of interest.

cardiologist

2008-03-12T08:35:00.001Z

Today we see the cardiologist - we're driving to the station and parking there and getting the train. Being on a yellow-box when we drove up last time cost the same as 10 trips by train- we don't want to risk THAT sort of expense again....

eyes

2008-03-11T13:14:00.002Z

On Friday we went to have the eye-test. Victoria had been practicing signing the pictures which are used in the test. With her left eye covered she could see (and signed enthusiastically) almost all of the pictures shown (in various sizes) from across the room. Then with her right eye covered she adjusted her position and evidently struggled to see any but the biggest of the images shown to her. The lady testing thinks it could be because she was losing interest- however, I happen to know that Victoria WANTED to say what the pictures were (she tried one sign after another!!). She has another appointment for June at which the eyes will be tested the other way round.

Victoria's favorite song at the moment is 'head shoulders knees and toes' - though a close second is 'wind the bobbin up'. She likes watching 'get up and go' a DVD with songs and silly things to do (with Dave Benson Phillips). She doesn't get it more than once a week - though she is ever hopeful and has her own sign for asking if she can have a film on (a sort of variation of the 'music' sign).
Just recently she has been a bit difficult in the morning 'education' sessions. This mornign when she got out of bed she just bypassed my room altogether and when she was brought back was keen to escape straight away! I thought, in the circumstances, I ought to concentrate on fun and speech-sounds rather than the reading and matching of names.
On Saturday Victoria enjoyed a visit to Wisley Garden and especially the flowers in the glasshouse.

clever

2008-02-22T14:03:00.002Z

Our little morning sessions are not as fun-filled as they were. I'm not sure whether Victoria is bored or just can't do what I'm asking her. This morning all we did was run through the sound cards and then count bears of various colours into different sized pieces of a fererro rocher plastic mold!
I was heartened to hear that when David put her in bed last night (I was shopping again..), he observed her 'singing along' to the CD. She seems to be quite familiar with this particular one which has 'we're all going to the zoo tomorrow' on it. she makes a noise a bit like zoo (more like jjjooo) and makes the noises (and signs) for the various animals anticipating them and making the sign before they are mentioned. I still insist on some high-brow stuff like Beethoven, Dvorak and Haydn whenever I can - but she can't be expected to sing along to them...
The potty training is at last looking promising - nothing unwanted on the carpet for a while.
Victoria is developing a relationship with Lucy who was in charge of feeding her at dinner time. Lucy thinks it is cute how Victoria hands her hands out to the side of her, palms uppermost, and says 'no no' (an adaptation of 'don't know') when baffled about life.

amusing features

2008-02-14T18:43:00.002Z

Victoria has David's old mobile phone. She has learnt mmobile phone protocol from watching David. Normally he is sitting at the dinner table with his fork half way to his mouth and the phone rings and he scrambles out whilst opening it, saying 'David speaking...' before he gets out of the room. The other feature of phone conversations Victoria has learnt is that sometimes you have to use your other hand to waft about to re-inforce what you are saying (honest, she doesn't get it from me, I hardly ever use the phone.....!) AND one has to stroll about for as long as one is talking. Victoria imitates all this very well and if one interupts her with an 'OK, then..!' she closes with a 'bye'. She's been doing a fair bit of 'talking' on the phone in the past few days. She's practicing all the sounds which are new to her. I still can't get her to say 'oh' - she's funny when she does her best to imitate the sounds I'm modelling for her and is extending her repertoire to include a fair attempt at 'e' (as in elephant) as well as 'ou' (for out) and 'u' (for up).

I'm considering whether I ought to get an occupational therapy evaluation.
She's learning to 'jump' and was very co-operative when the physio showed her, today, how she can shift the weight from one leg to the other - I think with suitable music Victoria could believe herself to be dancing like that. That would appeal to her.

homeopathy

2008-02-13T13:14:00.003Z

Throughout Victoria's life homeopathic remedies have brought about great relieve - most startlingly Aconite used to treat croup (the first time it happened I took her to A and E and they gave her some steroids which settled the condition down) . Over the years I have used many homeopathic remedies some with success and some without evident success. Many mothers have been glad of the advice to use bryonia to clear up blocked milk-ducts and carbo-veg to sort out wind in little babies (as well as settling down tummies after tummy-bugs) and therefore, assuming that some of those who have benefitted, might read this I offer the following link:
http://www.homeopathyworkedforme.org/
please follow the link and sign the petition to stop the pharmaceutical industry effectively monopolising the market for 'health' by marginalising into extinction homeopathic remedies.

verdict

2008-02-04T14:47:00.000Z

Ron drove us in to the Brompton - it only took an hour - we found a suitable parking space and were in good time for our appointment.
Mr Sethia's opinion is that Victoria ought not to have surgery right now. If the problem were repaired now it might re-develop. the suggested alternative might be medicine long-term (which neither I nor Ron are very chuffed about but I'll have to do some research....).
We get to see our 'new' cardiologist (the one we've had from the start has now retired) in about 5 weeks when Victoria will be checked over again. The main concern for the surgeon is that the heart repair work is not under undue stress because of the narrowing - which he thinks it isn't .

so, the good news is that there is going to be no disruption to schoolwork plans this year so we'll be able to keep on track with Omnibus.

We've got a week off, this week. Thomas is working with Philip and Lucy is going with them later today to paint at Sidcup.

big day

2008-02-03T18:50:00.000Z

Tomorrow we go to see the surgeon in London. I'm so glad to have had a busy weekend - lots of lovely visitors and Lucy leaving Leicester once and for all today. I even got to talk to Timothy on the phone today, a real treat.
Will report back tomorrow what the surgeon has to say.

update

2008-01-26T07:44:00.000Z

This week has seen struggles and steps forward. Struggles included Victoria's growing habit of saying 'no' - or something approximating to that - about food and sometimes even the work we do in the morning. Trying to decide whether or not she understands in some areas is tricky. Consequently it's not been a very good week for eating and drinking. Another negetive this week has been filling out the form for disability living allowance. I'm aware of the arguments against Christians taking benefits ('he who pays the piper....' and Chilton's insistance that we need a benefits rebellion - Christians NOT claiming) however, (dont' we always have a scary propensity to justify ourselves???), I'm probably producing more than the average number of tax-payers (3 contributing to the coffers along with my hard-working husband) and it is a consolation to get some of it back for Victoria. Everything Victoria has to learn needs more equipment than any of the the other children have needed, and gets better used, and the money gives me the freedom to take Victoria out to zoos etc. That said, I almost thought it wasn't worth the trouble. The form causes one to evaluate how long it takes to bath, dress, train, feed and generally watch one's child. One has to evaluate how incompetent this child is compared with a 'normal' child of this age. The rest of the time we are focussed on seeing the progress she is making and what she can do NOW which she couldnt' last week or last year. One gets the feeling that the government is suggesting that if one spends more than a 'normal' amount of time and effort on ones child it is THEIR duty to pay up. Of course I don't agree with that. I had bad dreams after spending 3 hours filling out this form. Maybe, some would say, it serves me right... Another negative this week has been that Victoria has been more than usually 'naughty' picking up things which don't belong to her and messing things up as well as (shock, horror) walking into the KITCHEN!!!! Sunday was exceptionally trying - suffice it to say that involved a nappy-removal and the desperate need for a bath 10 minutes before we were to leave for church. What I would do if I didnt' have Samuel and Joanna to help me in a crisis, I'm not sure, but I'm praising God for them both.

There have been lots of positives including that Victoria will now say 'mama' and tap me to get me to look at her face so that she can tell me something - normally asking for music, juice, milk, biscuit, book, paper and various other incomprehensible things.... One of the joys of children is when they start to TALK and you find out more about what is going on on the inside. It has been fun watching Victoria learn new signs and communicate and immensely pleasurable watching her 'dance' and generally be silly when music of various sorts is played. I often think we could just scrap schoolwork and spend all day watching Victoria and her funny antics. We've had no puddles on the floor - mostly because she has an incredible ability to hold on and we take her to the bathroom to shower her feet while she's on the potty before it's too late....

The appointment to see the cardiac surgeon is a week on Monday. I get butterflies when I think about that (there I go WORRYING again...) but am heartily thankful that we are so close to the hospital and that we have a top surgeon - and all this without causing us financial distress (thanks again to all my in-house tax payers and the rest of you!!).
I've been thinking about how music helps in the develping brain and ways in which it has been and could be used in play and work with Victoria. I've looked at one sort of music therapy - and I didn't like the ethos at all - it was not at all Godly. If anyone reading this can put me in touch with anyone with any expertise in this area I'd be glad.

daily routine

2008-01-02T20:24:00.001Z

Having been asked recently 'what DO you do with Victoria in the morning' I thought it might be useful to set down what it is which occupies our half-an-hour closetted together. We don't always do the activities in the same order, nor everything every day.
'compare bears' in red and yellow (all of one size, the little ones, they're cute!) are counted into either a red or a yellow pot. We use five of each. An extension of this is to hold out one of each colour and ask Victoria to select one of them and put it into the right coloured pot.
Lauri pegs - plastic pegs which can be lined up and pushed together and pulled apart.
Threading. Recently we have progressed from large-holed wooden beads onto a stick glued into another bead, to threading onto a stiffened bit of shoe-lace.
Using photos of 5 family members which are named Victoria has to choose (from two) the name card which I hold up and ask her for one of. Then she matches them. The goal is to have her pick up a name at my request when the pictures have been put away. I'm sure she knows 'Victoria' and less sure about the others....
A tin with a hinged lid is used to hide 3 or 4 small items. I shake it about and ask for her to pick out a particular item increasing the time lapse before I open it and she can see into the tin and make her selection.
The activity which, even on a bad day, is always pleasurable to Victoria is the jolly phonics worksheets coloured in and laminated which, when held up, prompt Victoria to rehearse some of the sounds she knows and learn new ones.
Wooden puzzles with the pieces which have little knobs on offer practice in using the thumb and finger together and putting the pieces back in give opportunity to learn words like 'too big', 'too small' , 'rotate', 'turn round' and sometimes 'behind you'!!!!

It has been helpfully said that in any activity one must keep clear in my mind what is the aim (are we counting or are we trying to improve her signing, for example) but sometimes we take a little diversion and sing a song!

2008-01-02T20:08:00.001Z

This photo session started out with the aim of getting a good one of the girls but more and more faces kept appearing! This happened to be the best of of Victoria overall.

A rare cuddle with Philip during the time he was home-based working for a family in the church.

recent pictures

2008-01-02T20:03:00.001Z

Here she is on Christmas day.

Blogging question

2007-12-15T05:48:00.000Z

DOES ANYONE KNOW HOW ONE CAN DOWNLOAD AN ENTIRE BLOG? I SHOULD HATE TO LOSE ALL THESE REMINDERS OF THE FAITHFUL SUSTAINING POWER OF GOD...

pictures

2007-12-11T13:34:00.001Z

This was when Victoria had eventually settled down last Monday - Thomas had thoughtfully put his MP3 player headphones near her ears so she could hear some restful music.

Here she is - ready to demolish the tower which everyone had 'counted up'. It was commented by another mother that she very delicately pushed it over!

potty tng. etc

2007-12-11T13:24:00.000Z

Potty training, though spread over a longer period of time than with the others, is not going too badly, all things considered.
The physio, whom we haven't seen for about 5 weeks, was VERY impressed that Victoria didn't have a nappy on.
The reason the physio came was because I was a bit concerned about Victoria's wobbliness in walking since the catherisation. At least she WILL walk now, but she falls over very easily. The physio showed me that there is a muscle in her right thigh which is quite tensed up - this is because of where the needle had to go in.
David and I (independantly of one another) have been online to see the options for the surgery which Victoria needs so as I started to tell him what I had found out, we compared notes!
I got a cute picture of Victoria with her little class in Leatherhead on Monday. It was suggested that since it was the last one of the year we might like to dress up in a Christmassy manner. it was planned that Victoria would wear her red dress but the lack of a nappy when she went for her morning sleep put paid to that! Instead she wore her 'Christmas tree fairy' dress (which Thomas bought for her when she was one and which she has been striving to grow into ever since!) - the tinsel in the hair completed the picture.
Will try and upload next....

progressing

2007-12-08T14:54:00.000Z

This morning Victoria actually ate breakfast. She ate a few chips for dinner and now she has ALMOST finished a hob-nob (at 3pm). this is the nearest we have got to a good day of eating for over a week. Still not to enthusiastic about drinking but when I respond to her 'no, no, no' with a 'never mind that it's YES' she meekly drinks a little! It's a good thing that she know's who is boss - it is safer that way!

recovering

2007-12-06T08:02:00.000Z

Victoria is a bit slow at getting back to eating and drinking. I'm having to be firm and counter her 'no, no, no' response to drinking. She's also quite reluctant to stand up and walk - I guess her groin feels a bit bruised - it certainly looks it! AT least she is a bit more alert today - not lying on the sofa but sitting on the floor. Her self-imposed imobility might make the portage session this afternoon a bit more focussed than it was last week! We had a successful 'lesson' time at 6.30am where she is learning to discriminate, select and sort red and yellow plastic bears.

Home again

2007-12-04T13:27:00.000Z

I phoned the hospital at 8 on Sunday to check whether I ought to take Victoria in even though she wasn't very well. They said yes. Various tests - starting with an x-ray - were done. The most traumatic was, as always, getting blood. The good thing was that they took blood for the thyroid at the same time so that will save the necessity of having that done as a special event.
the anaesthetist came and checked her over and said she was OK for the catheter. A VERY long echo during which Victoria was very patient, still didnt' successfully get a picture of what was going on with the aorta - though the heart valve doesn't ahve a leak apparantly.
Sunday night was excessively noisy with a selection of intermittently squalling babies (sometimes as many as three simultaneously) and overly jovial nursing staff. I slept for about 1 and a half hours. The rest of the time I had cause, once again, to be thankful for my MP3 player. Victoria slept fitfully.
Monday morning came and a pre-med made victoria light-headed and amusing! It was two hours before she was back on the ward. The Doctor came to see me before I got Victoria back and said that it was a difficult case, ballooning was not possible because there is a long-ish length of the aorta which is uniformly 4mm in diameter rather than the ideal 10mm. This is causing her left ventricle have thicker muscle than it ought to have. Pressure to her head is more than 30% higher pressure than to her legs. The catheterisation allowed a picture to be made of the vessels around the heart to be made - radioactive dye was release at the end of the tube and pictures were (I suppose) taken. The surgeon (prob. the same one who worked on her 2 years ago) will have a look at all the information and figure out how to sort out the problem. It could have involved a 'cut and paste' job but one of the Drs. thinks that it is too long a stretch to do that on.
So we hope that sooner than later we will hear from the hospital again and go to get it repaired.
The second night in the hospital was necessary because Victoria had a slight allergic reaction to something AND was refusing to drink....
It led to the happy circumstance that I met another delightful (Christian) family with a daughter who has d.s. She was going for heart surgery this morning.
The next job is to bath Victoria and remove the plaster strips which were placed over the holes made in her groin yesterday. she's a bit reluctant to stand up and walk around right now - I think it must be sore on her legs.

catheterisation plans

2007-11-30T06:40:00.000Z

The first provisional date having been cancelled was a good thing in the light of the fact that Victoria then went on to be knocked out by a cold. Most people in the house have now had, or are cultivating, a cold.
We have a bed for Sunday and we have to be there at 10.30am. On that day Victoria is to have x-rays and other tests in preparation for Monday when it is hoped that she will have the camera threaded up through her artery to identify the nature of the narrowing.
This morning Victoria is unusually inactive and has a fast pulse. I hope it is just a way of her finishing off with her cold and not the start of something which will mean we have to put off the appointment on Sunday....

delay

2007-11-19T16:39:00.001Z

there was no bed for Victoria today - the next provisional date is the 3rd of December. Victoria didn't mind anyway!

Dates

2007-11-14T09:09:00.000Z

Last week we had an appointment to get Victoria's eyes checked - they're fine. next time, with the help of some pictures which she ought to be able to make the signs for, they can test how far she can see.
We have the date for the cardiac catheterisation but have to wait to hear from the people in charge of booking beds - we expect to go on Monday mng, early.
Before that, on Friday, Victoria has an appointment to ahve her ears tested. I think they are fine but there's not much use thinking about speech therapy if she's not had her hearing tested.
Yesterday I had the pleasure of meeting a delightful young lady, 20 years old, who has down syndrome and has been homeschooled. What an inspiration she is. I wish I'd taken my camera, but I'll not forget her anyway. She plays her part in a busy household. She still needs to learn things and so she continues, with her younger siblings, to learn at her own rate. Along with that she is an invaluable help in the kitchen and the household generally. She likes poetry and she writes. She knows what it is to be insulted and ridiculed, and she deals with it in a very gracious manner, not feeling bitter (as I would) against those who despise her. Of such is the kingdom of heaven....

October update

2007-10-22T13:08:00.000+01:00

Victoria now walks nicely and enjoys climbing on to and off a sofa. Last weekend we were invited to friends (at the end of a week in which I had read that the only thing missing in the first section of development was climbing up/down stairs) on the Sunday. They have a very handy, carpetted, flight of 5-stairs in their house, which enabled Victoria to master the skills. It's wonderful to see how the Lord takes care of all this sort of detail!
We now have the date for the investigation into the co-arctation of the aorta. We should go in on the 19th of November, DV. A general anasthetic will be necessary. First the camera will be sent along the aorta with a view to finding out where the narrowing is. If it looks suitable, at the same time a balloon dilatation will be performed, or a stent could be put in place. If it doesn't look suitable for either of these proceedures we will come home and wait for a further appointment for surgery.
Victoria's not bothered about it of course(!!) and I ought not to be, because it is so much less major than what she had 2 years ago (the anniversary is the 25th of October) but I'm afraid that going back to the same place will restore all those half-remembered nightmarish experiences of that time. I guess I need to concentrate on the many, many causes for thankfulness associated with that time instead.
Victoria is enjoying the group at Leatherhead though I'm on my guard against the possibility of her picking up some of the bad habits of some of the other children there. She's pretty astute and figuring out what is required of her, and, so far, quite willing to comply (unlike some of the other children....). Victoria is, also, the most polite, always adding the makaton for 'please' and 'thank-you' after taking or handing back anything.
the most recent amusing 'trick' which Victoria has learned is a 'grrrrr' sound in the back of her throat at the sight of pictures showing bears/lions or the mention of the word 'scary'.
Lucy's home for a few days which is always enjoyable for everyone.

update

2007-09-24T19:58:00.000+01:00

on the annual visit to the cardiologist (last Weds) it was discovered that Victoria's aorta is getting a bit narrower. She is waiting for an appointment to have a cardiac catheterisation so that a camera can be fed along the artery to see where the narrow spot is. After that a balloon dilatation (or something else, unspecified) can be performed in order to widen out the narrowing. This will mean from one to three days in hospital at some time in the near-ish future.
Meanwhile life continues crazy - and victoria loves it. There's always comings and goings. If I have to go out and leave her here she copes very well being looked after by Samuel. She likes her new little shoes I bought from TK Maxx on Saturday and was very entertaining at the church Harvest Supper on Saturday evening.
Her speech is coming on - she can say bye bye and book quite clearly. She had a go at saying 'dirty' today (I was trying to prevent her from picking up something she shouldn't). She performed a series of signs saying 'more biscuit please' when her first pair of oatcakes with goat-cheese between was finished.
She has her favourite place to sit in the dining room and has sometimes been found sitting outside (or, today, inside) the bathroom - we suppose she was waiting for a bath, but we're not sure. She's a poppet.
We all love her ever so much.
This afternoon she picked up a paper-back copy of a Henty book which one of the boys had carelessly left on the floor. Grabbing it (and it isn't light or thin) she hauled herself and it onto the sofa. Then she flopped backwards (I suspect she has seen one of the boys adopting this posture to enjoy a book) and opening the book on her chest began flicking through it (it wasn't always the right way up either...) with an ocassional chuckle to herself! I didn't manage to catch it on photo.

Downs Ed

2007-09-01T20:32:00.000+01:00

This week Victoria and I went south to Portsmouth - for an open day at the Down Syndrome Education Trust. the chat I had with the lady there was very helpful and she gave me some useful pointers to help me in developing Victoria' speech and language.
We'll miss the group at Leatherhead on Monday (not a good start!) because we will be going to Cefn Lea. The Lord so arranged it that it is possible to spend the 4 days of the Cefn Lea homeschool holiday sharing the bungalow with a family from Birmingham who have not only got delightful children but their children include a 3-y old girl with d.s. The family came this week and stayed overnight before the mums and girls went to Portsmouth for the day on Thursday. I'm hoping the VDB's will make the most of the opportunity to learn and practice Makaton signs and that therefore Victoria will learn more.
Victoria can now walk about 10 steps quite confidently and is evidently pleased with her efforts.
Yesterday we had a delightful day at Birdworld with Victoria taking a keen interest in all she saw - especially the pony.
While Richard was showing the neighbour round the chickens which need feeding round here, while we are gone, this afternoon, she mentioned that if Victoria wanted to ride her little pony anytime she would be very welcome - so that's exciting.

walking

2007-08-22T13:14:00.000+01:00

Over the time in the SW Victoria developed the ability to walk. She is now up to about 5 steps. She enjoys practicing and gets better, and steadier as the days go by.
the signs she can make now include : garden, more, biscuit, flower, music, dog, please, thankyou and amen (which are all the same sign for Victoria). She uses her arms and hands to communicate some other (currently unidentified!) information too.
Next week we are going to the Downs Ed . centre at Portsmouth - where Victoria will be assessed. We're going to miss the first of the classes at Leatherhead but are looking forward to joining that group when we can.

signs

2007-07-23T08:57:00.000+01:00

Yesterday Victoria learnt, and practiced the sign for biscuit - it is very sweet to watch her tap her left elbow twice with her right hand - she 'talks' at the same time.
I wonder what she will learn next.
She is enjoying meeting new folks down here in Cornwall and has been on the beach. yesterday at church once she had dropped off to sleep I laid her on a blanket on the floor - many people were blessed by seeing her asleep and awake! What a precious gift she is!
I wouldnt' be at all surprised if Victoria were walking by September - she's getting much better control of her balance as the weeks go by and can stand for some seconds before going down. We're still working on getting her walking around holding only one hand - she prefers two of course.
Today it is raining so we won't be going to the beach but tomorrow we hope to go to the beach.
David will be there so Victoria will be very happy!

general update.

2007-07-06T21:01:00.000+01:00

James came in from the garden while I was ordering a train ticket for David at the computer. He held out a stalk with a petal on the end saying 'I brought you a flower, it was going to be a poppy but most of the pebbles fell off......'.
Today we had physio and portage. Victoria is standing for much longer and when she DOES go down it is much more controlled. Speaking of control, we kind of lost control of one her shoes since we got back - the knowledge that Jane was coming at 10.30am galvanised us, however, and Samuel discovered it in a bag. That meant that when Jane arrived Victoria was impressively trundling her ancient 'walker' up and down the concrete road - with a pair of 'Yellow Pages' in the front for stability.
Victoria has a cold and didn't sleep very well last night (guess who else didn't?). She can, however, blow her nose (I can hardly believe it!!). It sort of makes up for the lack of cooperation she showed when Tina (portage) came this afternoon. She shows a distinct preference for books above everything else though she made the car go 'broom broom' and chatted impressively on the 'telephone'. He telephone technique was improved while we were away and one or two brothers 'talked to her' - as expected she was stunned into silence while there WAS someone on the other end, however, she seems now to know what phone if for, which is fun!
On Wednesday this week we went to the hospital for an eye appointmetn. It was confirmed that Victoria still has a squint in her left eye and that she isn't moving her eye round (preferring to move her head) to the side as much as she could or ought. On monday we went along to an early ed. group which follows the ideas of the Downs Ed. group from Portsmouth. I think Victoria will find it fun.
Also this week when I was telling one of the children that Victoria has been sitting in the garden, she flattened out her left palm and drew a circle on it (as in 'round and round the garden') were we EXCITED? IMPRESSED? you bet! Whenever we do that rhyme is it not in connection with any real or pictured garden - she just connected the words she heard. She seem much more willing to have a go at makaton signs so we'll be majoring on that over th ecoming weeks. Portage doesn't happen again until September in any case. Perhaps when Tina comes back Victoria will be walking and signing - that would be fun!
I had read that if you show children makaton signs - even if before they are ready to use them, at the time they would begin to speak, they are inclined to use signs - so maybe were in for a lot of excitement while we are on our summer hols.
Still haven't quite finished unpacking from the Scotland trip but at least all the sleeping bags are washed and dried. The food needs sorting out - it's all dried or in tins - and some of it will be hauled down to Cornwall and Devon from where we hope to return around the 11th of August.
Six days after I returned, Ron left for Taunton where he and some of the boys have been erecting a barn. WE see them on tuesday as we go towards Truro via Newton Abbot.
This afternoon I drove over to Costco at REading with the disk containing 500 (ish) pics for printing. VEry much hoping (though not expecting) that they might be able to print them today, though supposing that I would have to return on Monday or Tuesday, I was delighted to find that they COULD do them. It took about an hour. I also bought some photo albums which are now full of the pictures. I 'll have to write where they all are in the next few week s- before I forget - but at least they are in order, and viewable.
Last night was a late one, tomorrow morning will be an early one, tomorrow night will be late too as I will be collecting David from Virginia Water station, so I'd better stop now.
I'll just say that Philip and Timothy arrived safely in Switzerland - by plane rather than by car since Philip's car blew up at Illminster on the way back from Taunton on WEdnesday evening... They are due back on Monday - I'm collecting them late from the station too....

anyone still checking here?

2007-06-09T15:22:00.000+01:00

In case anyone is still checking this blog let me report on how Victoria is enjoying travelling and how she is progressing.
Victoria is in a determined habit of waking at 4.30am and NOT having two sleeps during the day. No matter how late she gets to bed she is pretty fixed on an early start. She has days when she doesnt' want to drink much at all but on the worst days she gets 8 fl oz of milk (by hook or by crook!!). She is as lovely and uncomplaining as ever and turns heads here in Orkney as whereever else she goes.
Her latest faces are QUITE a hoot and one of her new skills is to hold onto only ONE hand while walking.
she gets to do some things out her special box (like picture matching) some times - though not as often as if she were at home - and she doesn't really spend very much time on the floor -mostly she is in a pushchair, car-seat or (preferably!) in someone's arms. She's getting REALLY good at doing 'kisses' - but when she makes contact with someone's face it is still the open-mouth sort of kiss, with sound effects. She has learnt to make a 'j' sound - for Joanna or James.
She particularly enjoyed her ride in the trailer behind thomas's bike yesterday.
this morning on the boat trip she saw some seals - got very excited about the spray from the motor of the boat - and after looking at only a very few of the nesting birds, fell asleep on Samuel's lap. She's happy about the sun having come out this afternoon - for the first time since we came here (8 days ago) because she doesn't have to have her coat on.
Samuel is looking after her and the other little ones while Thomas and I are at the library.

birdworld trip

2007-04-21T05:38:00.000+01:00

This is of our trip to Birdworld last thursday - this object of the children's attention is NOT a bird...

new blog

2007-04-18T09:48:00.000+01:00

for those who wish to enter into the adventure, in spirit, go to http://scotlandtaba.blogspot.com (the 'taba' stands for 'there and back again'). I don't imagine I shall get LOTS of opportunity to update while we are on the go , but I'll put info into the computer and update when I find a 'hot-spot' - or maybe I'll even use an internet cafe or library.

for a change...

2007-04-18T08:21:00.000+01:00

Thought I'd offer an update on Victoria. She's currently trying to open out the Daily Telegraph. She says 'ba ba' quite a lot - it has a multitude of meanings including 'can I have that other Daily Telegraphy too?'. This morning she stood herself up in the middle of the floor. The proceedure involves (obviously) planting her feet on the floor and straightening her legs. The she unfolds herself into the upright position and has a look of anticipation ("what's going to happen now?") about her. Then she stays there for up to 2 seconds flopping down (straight-legged, bottom first) back to sitting. She gets a great thrill out of it, and therefore so do we all.
A recent attack of migraine preciptated the end of expressing milk - which is just as well - it had to be finished by next monday when we leave for Scotland. Consequently Victoria has, along with her vitamin supplement, daily 'dha' oils. She only drinks from a bottle (a bit of a defeat for me, I was rather keen that she would drink from a cup....) but will swallow water squirted into her mouth from a 'sport' water bottle - which is going to be handy while we're gone from home. She has 2 or 3 bottles of goat milk a day. She now eats bread (made with spelt) and prefers the sort which has raisins in it. she's also rather partial to chocolate-chip cookies.
Her eyes are sometimes better than others but generally it is the left eye which is dodgy. I'm hopeful that being out-doors so much will help give plenty of exercise for the eyes.
Today she will be able to exercise her eyes while enjoying the fresh breezes at Lymington because this is the day that Wednesday Junior Sailing begins.

fun

2007-04-12T07:34:00.000+01:00

I kind of regret having brought Ice Age into the house - but only 'kind of' - Richard has discovered, in Sid the Sloth, his alter-ego. The more I think about it, the more I think we would all have been impoverished, and limited in our understanding and appreciation of our dear Richard!
Not sure if Sid the sloth could be half so good at making flapjacks as Richard is though...

Not Victoria

2007-04-04T15:13:00.000+01:00

at about 8am this morning, Philip phoned from Wokingham - on his way to work a van pulled out in front of him and as a consequence he has written off his van. I specifically prayed this morning that Philip would be kept safely on his way to work (not a thing I normally do!). My initial feeling was that God didn't hear - however, Philip is unscathed - it is only the van which is trashed.

After a VERY trying journey in heavy traffic, we found Philip waiting by the roadside. Timothy took the trailer and I followed on with Philip. After several phone calls trying to arrange for a hire-van and to get the broken one towed home, we left Wokingham - about 12 noon I suppose. Now Philip has (again!) to search for a vehicle....

aah haa!!!!!

2007-04-03T20:25:00.000+01:00

I found that the computer was waiting for me to give it the necessary information but the window was hiding, so here are the pictures....

happy chicks

2007-04-03T20:01:00.000+01:00

Well, Victoria has a 'thing' about soft-toys so it was interesting to watch her response to the newly hatched chicks. She was curious to get close and look at them but when one was set on the floor near her she nearly did-it-in in her anxiety - first waving her leg at it and then trying to bash the poor little thing. It was rescued instantly of course. David couldn't resist taking one into the office to 'work' with him! It's ok, Timothy, it didn't last long - not even half an hour - then it was returned to its siblings.
can't seem to upload the pics right now - will come back later in the hope it will work - they really are cute!

2007-04-03T19:55:00.000+01:00

here it is - the evidence - she CAN stand up! She's getting more and more adventurous, showing off here by holding on with only one hand!!

The Eyes....

2007-03-20T17:50:00.000Z

this afternoon we went to Ashford Hospital, as planned, but half an hour late (because I didn't look at the paper upon which the receptionist wrote the time when I went last time and found the appointment was cancelled....) I thought it was 2.30 - so we got there at 2.30 (ish..).
We got seen straight away - and I apologised for being late. The lady who checked Victoria over was very pleasant. She had an astonishing collection of pencils with jolly tops on - the best one she showed us was the koosh-ball ostrich - in bright green - can you imagine that? She found that Victoria still has a slight squint (though I don't notice it) and on the positive side she said that Victoria is very good and using both eyes. That is to say that when an object is moved across her field of vision she follows it with one as far as she can and then takes over with the other one. That means that one won't get a chance to be underused and consequently useless. We have another appointment in July, this time at St Peter's. I supposed we went to Ashford because there was not a department at ST. Peters but I find that is not the case. Apart from parking being VERY difficult at St Peter's it is really preferable on account of being closer to home. So, Victoria missed her afternoon nap and went to bed early - and now I can turn my mind to tidying into boxes some of the books which I collected at the airport at 6.30am......

On behalf of Victoria

2007-03-20T07:33:00.000Z

Victoria is very sweet, and so is her mummy. It seems appropriate - if late - that Victoria (or I on her behalf) wishes her mummy a very happy Mothers Day. If Victoria were old enough herself she certainly would have done so herself.

mistakes

2007-03-19T08:12:00.000Z

Last week we went to Ashford hospital for an eye clinic appointment which wasn't - I dimly remembered having received a letter changing this appointment but the letter I HAD was the original, not the replacement. hey ho - it was a pleasant trip out anyway and I was back sooner than I thought I would be. The REAL appointment is tommorow afternoon - which means we miss hydro.
The real prompt for this blog was, however, that Simon has created a 7.5volt electric eraser - with a switch. All his brothers think he's amazing - I dont' know that he makes SO many mistakes that he would need such an invention but it is fun to see what things he thinks of. He also got his typewriter out again to compose the next installment of the story of Lukee. I asked him what it was going to be about and he said 'it's about Lukee has a heart attack'!!! The opening sentence is pretty good - but he's not got much beyond that. The writing program we are using (Institute for Excellence in Writing - structure and style) is quite inspiring, I suspect this is behind Simon's desire to continue the writing he started when he had his leg in plaster.

the centre of attention

2007-03-02T08:06:00.000Z

yesterday we had they Physio. arrive (as planned) at 1pm, then the Portage lady a half hour later and then the health visitor dropped in - as she was here checking out her camper van which seems to have a new resident in the form of a mouse!
tina (portage) hadn't been for 4 weeks and the progress which Victoria has made was noticable. We have a rather nice wooden galt shape-sorter (thanks ever-so-much Naomi!) which has the 'easy' holes at one end and the tricky ones at the other. Victoria has been learning not only to get the circle in but also the square and the triangle. The tireder she becomes the more reluctant she is to go beyond the circle and instead she picks up the holder and shakes it while looking at me.
I always AM amazed at how well children can communicate when they have no words and it is great fun watching Victoria learning the subtelties of communication. On Saturday we had another family whose little girl can sit but not go anywhere. She and Victoria were looking at one another, and communicating with little noises. When Victoria picked up a book which Keziah had been looking at Keziah made a little 'disappointed' noise whereupon Victoria looked at her face and carefully returned the book. Mind you, when Victoria got it again later she was less willing to hand it back! When Tina arrived yesterday Victoria didn't see her come in but having studied her face she obviously recognised her. The next thing Victoria did was to look in the most likely place for that exciting basket of things which are brought for her to do and explore. Then she looked earnestly at Tina, then at the basket, extending her hand in the direction of it, communicating very effectively that she would like to play with something from in there!
We're all off to Oxford today with our two Swiss visitors. We are going to the Ashmolean museum and looking at the martyrs memorial - it looks like it will be a perfect day for it.

popping up

2007-02-27T09:46:00.000Z

This morning I went into my room and saw that Victoria had, again, fallen asleep sitting up - she looked so sweet that I went to get my camera. While I was looking through the view-finder and had pressed the button she popped up like a jack-in-a-box and grinned one of her cheeky grins at me! So she wasn't asleep after all!
Since the big pump went back the playtex pump has facilitated the production of 9-10 oz of milk a day. Victoria is still not very keen on drinking ANYTHING other than milk. I tried her with goat milk, and a spot of tea (!), in a bottle yesterday and Thomas, showing tenacity, managed to get her to drink most of it - she's not impressed though.
Her new shoes are on her feet each morning - it does make it difficult for her to move around on the floor and get to standing (which is why I leave them off in the afternoon!) but once she is up she is decidedly more stable and has been seen (though not by me) to walk along the front of the sofa.
I've been using the time with her early in the morning to work on matching items -she's getting really good at it. I aim next to work on getting her to match pictures and objects - then picture and pictures. She's always very interesting in everything and investigates with great diligence. Yesterday she got herself to standing (in her shoes) at the dinner table - on the bench. Everyone was looking at her (and she KNEW it!!) and she did all the funny things she could to make people laugh - she loves to make people happy!
This morning I had Simon knocking on the door, he came in, followed, one at a time, by lots of others. Samuel went off holding Victoria and her clothes, ready to dress her for the day, followed by the whole crowd - Timothy at the rear talking to Victoria as she was being conveyed down the hall to the lounge! She's still quite the celebrity in this household and a constant and continuing cause for joy and rejoicing.
The dry skin on the back of her hands has cleared up. I have been deliberately NOT giving her yoghourt - now I shall give her yoghourt again this week and see if it comes back.
Simon was back in hospital last night having his leg x-rayed after, all of a sudden, not being able to bear weight on it because of the pain. Nothing untoward appeared on the x-ray and he says it is a bit less painful today. I have to take him back to the fracture clinic on Thursday (about an hour before the physio and then the portage lady are due to be here for Victoria !!!_.
Off to Mercedes Benz world next with our Swiss visitors.