Victoria

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

Monday, June 30, 2008

progress

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.

Friday, June 27, 2008

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

pox

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.

Thursday, June 26, 2008

Blood pressure

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.

Wednesday, June 25, 2008

in praise of stacking cups

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.

Friday, June 20, 2008

Ears clear

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....

Thursday, June 19, 2008

spots

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.

Tuesday, June 17, 2008

chickening out

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.

Saturday, June 14, 2008

appointments

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!
 
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