Victoria

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

Thursday, March 30, 2006

fun but tiring

It was a good thing, in the event, that Victoria had a sound sleep this morning. She woke up 10 mins before Tina arrived, drank her milk and then she was straight to work. Well, truth to tell, she just was sitting but that is tiring. She had a go at banging a tambourine (actually, she preferred to use her fingers to rattle the silver jangly bits), rattling maracas (she did pretty well at letting go of one in order to take another one and also at figuring how to take hold, in her left hand, of one from off the floor while her right hand was already grasping the other one). Then there were small things to be lifted out of a container which was too heavy for her to pick up and invert - that was a novel experience.
the things we will be practicing before the end of April, when she comes again, will be 1) letting go of things or handing them over to someone
2) taking things out of different sizes of container
3) exploring things of different textures (other than plastic!!).

anyway, by the end of the visit, poor old Victoria was all done in (actually, so was I!) and went to bed early (maybe I should try that too.....).

Wednesday, March 29, 2006

advancing

Victoria is highly motivated to make forward progress - she exerts all her effort but goes no further than an inch or two. She has taken on board the training in sitting up and is very good and using her tummy muscles to haul herself to sitting, while I am holding one or other hand. This morning she was having a good chuckle when I wiggled my fingers above her as she was lying down on her back and bringing them down towards her whilst making a suitable noise and then landing them on her tummy. She had an audience, actually, they (and I!) were making so much noise (laughing heartily) that we could hardly hear her delicate chuckling, but we could SEE it!
Hydro yesterday was the best yet - she only swallowed one mouthful of pool water (Thomas is getting better at keeping her mouth OUT of the pool!) - she splashed heartily with both arms, quite a lot.
Tommorow we expect our first 'lessons' and assignments from the 'portage lady' - otherwise known as Tina - we're looking forward to that.
Other things we are looking forward to include Lucy's visit from the 7th for just short of 3 weeks. She hope to go on a Chrisitan Answers weekend and possibly for a couple of nights camping in the IOW with Philip and one of the little ones (there is a plant delivery to be done over that way). She could probably use a 'holiday' - not sure she has had one for a while.

Saturday, March 25, 2006

baby in a basket


The physio took back the special chair which we had been borrowing for Victoria and since she can't reliably sit without falling over I put her in a laundry basket - then it turned out that a black crate from the nursery which had been used for plastic cars, was a little longer (so her legs are less squashed) - I even thought it might be an idea to put strap-like handles on so she can be moved about it in more easily. Of course for indoors this crate could be put on the board-with-castors which we use for moving heavy bits of furniture around the house. The possibilities are endless!
This morning when I went to get her up for her milk I said hello and then noticed that she was waving her right hand (as best you can when you are propped up on your elbows!) - this is very exciting!

Wednesday, March 22, 2006

trials

Today we left at 9.30am for the bank (which was closed until 10am - no, we didn't wait) then Community (health food wholesale) for bargain hipp baby food (not that she is eating it yet, but it is discounted for March and April) and then (the goal) Hendon RAF museum. The trials lay in the fact that there was not a 13amp socket in the baby-changing room so I had to resort to the little Medela pump - which took about 10 minutes to get 30mls. Victoria was thankful, however it wasn't quite a meal. It left me rather uncomfortable. I tried again when we got to Costco - at 4pm - by which time my very patient little girl was expressing some discomfort. (Thomas said her tummy was rumbling!). She got about another 20mls! Mercifully the Lord took care of us and gave us an exceptionally swift journey home - in spite of many signs stating 'congestion after next junction' - the slowest we got down to was about 30mph. I am sure that there must have been a lot of busy angels getting those cars out of the way. Having hit the M25 at Watford at about 4.45 we were home by 5.20pm! I told Victoria (while she was working her way through a massive 7oz of milk) that the Lord cared a great deal for her. She is amazingly patient and I am sure I have a great deal to learn from her.
The day at Hendon was very good and we would all like to go again (well, all those who expressed an opinion) but I'm not going until I have a battery pack so I can work the Playtex pump while away from home.
Now I am looking forward to bed.

Tuesday, March 21, 2006

is or has

It sounds somehow worse to say Victoria is a downs' child rather than that she is a child with downs syndrome. In heaven Victoria will be Victoria, without chromosomal restrictions. I suppose it doesn't make any difference to some people, but to those who care for a person with down syndrome, I have a feeling it does.
The 'portage' lady came today (and told me why the name..... it is because this idea originated in a place in America called Portage!). It was a good visit. She is a Christian too and very sensitive to our partic. unique learning environment - particularly keen to set goals which can be achieved given our current educational framework. Most excitingly Victoria is looking like she is ready to start copying (she already waves sometimes when we do) and therefore some of our earliest objectives will be signing. We dont' do any yet because all I know is what is on the video of nursery-rhymes (much of which doesnt' have much practial application!!).

Thursday, March 16, 2006

bye bye

victoria has added to her repertoire - she can now wave 'bye bye'. This is as well as blowing raspberries and making fish-faces.
At the clinic on Tuesday she was referred to have further investigations on her eyes - which seem to not work together and I would hate for anything to be missed which, with exercise, could be straightened out.
She weighed in at 6.72kg and continues to have only breastmilk (praise the Lord). The Health Visitor explained to her assistant that she had known me for a long time and that none of the babies had anything other than breastmilk until they were a year old.'one of these days the rest of the world will probably catch on to the idea' she said! She had the normal 8-month check-list marked up - she was doing fine - on the low end of normal. I was a bit bothered that she seems to open and close her hand indiscriminately in the general direction of toys she wants to grab but it was noticed (because she was given some small cubes to play with) that she is actually beginning to develop the 'pincer movement' of the finger and thumb.
Tuesday was an action-packed day altogether with hydro in the afternoon. This time Samuel took Victoria in the water and she had her most exciting time yet. Apart from the physio (Jane), Samuel and Victoria there was no-one else in the pool this time. At the end of all that Victoria has some special supportive boots. I just tried them this afternoon and they make a tremendous difference to her ability to stand - though she seemed rather interested in sitting down and exploring the boots rather than standing for a long tim.
I have been reading one of the books I have for down syndrome - the 'gross motor skills' one. This is giving me direction in helping Victoria to learn to sit from lying on her back without developing common bad habits (like doing the splits to get to sitting!) and working on the right movements with a view to strengthening her arms and tummy muscles. Her grip is very weak - she has to hold my thumb in the exercise but I need to keep one finger on the back of her hand otherwise her hand slips off my thumb altogether.
next Tuesday we are expecting a visit from the 'portage' lady. If she likes us and we like her then Victoria will get regular visits and we will be given suggestions as to how to help her to progress from one skill to another. She comes from the same office as our LEA advisor (from whom the rest are getting a visit on the 24th of April DV. I hope very much that we will begin to learn Makaton - it will be fun to discover how much Victoria can communicate. I heard from a lady whose 4-y-old d.s. son at 8 months could sign 'more' 'mummy' and 'daddy' - his speech is very retarded but he communicates very well with makaton. She said that her baby (now less than 8 months) is learning signing from her big brother - so I suppose Victoria could already have been doing some but we have to learn it and use it consistently for her to learn it.

Wednesday, March 08, 2006

one from Sunday

Baby shows

Do they still DO such things - prob. not very polically correct....
Modesty nearly forbad me from declaring that I came second in such an event once (if I had come first I would have kept quiet!). I have the photo to prove it - black-and-white of course. It was on a Butlins holiday.
Anyway, David, who is 16 today, declared, this morning, that Victoria would be very good in a baby show. Thomas agreed and David was all set to go and find out if there was one we could enter her into! There were 4 children sprawled across the bed gazing admiringly at Victoria at the time and I couldn't help wondering how very DULL life might be right now if we hadn't been entrusted with this little darling.

Tuesday, March 07, 2006

Physio

the physio said that Victoria is doing brilliantly. What we have to do now is when she drops her toys when she is sitting, let her try and pick them up - especially when they are off to one side so that she will use her hands to keep herself from falling flat and will have a half-way base from which to correct her position again.
She demonstrated her ability to use rolling over as a technique for reaching things which are just out of reach. I think she's quite bright really. I even nearly got her to laugh this afternoon in one of those throwing-in-the-air-and-saying-boo-on-the-way-down sessions which we mothers like to indulge in!
It could be that next time we see the physio (next Tuesday, at hydro) we will recieve some special boots which have insoles - these will make sure that when Victoria is in a standing position she will have the necessary support for her feet and ankles.

Monday, March 06, 2006

rolling around

Victoria is doing very well with rolling from her back to her front - she gains momentum and carries on rolling over - shame one can't take a picture of it. She has managed to get her hips off the floor briefly and launch herself forward a couple of inches and she also makes herself pivot round when there is something beside her that she wants to reach. She is keeping very well - I don't take her out in the cold and we're looking forward, very much, to the advance of Spring and walks out with the pram.
She continues to be the object of admiration and joy for all her brothers (and sister) who daily declare her to be the most beautiful / cute / funny baby in the world.
She continues to have only breastmilk and has had a sample of potato and banana (at which times everyone is in fits of laughter at the faces she pulls) and has had a taste of water (from a cup) and rooibosch (from her bottle).
The physio comes tommorow and we expect her to be VERY impressed at the fact that Victoria can sit up for about 2 minutes before falling over (unless she sneezes, laughs or looks up at someone...).

Wednesday, March 01, 2006

sitting

Victoria can sit for about a minute now without falling over. I re-did her curls today after yesterday's hydrotherapy. She was in the hands of David and once he inadvertently allowed her head to slip half-way underwater. She was none-too pleased about it but she forgave him. Most of the rest of the time she had her feet up to her face and was stuffing them vigorously into her mouth. There were a couple of times when she was stretched out in the water doing the sort of thing she was supposed to be doing though. She goes next in 2 weeks DV. The average weight gain seems to be about 100gr per week - she looks positively chubby in her swim-suit!
 
+ Raising Down Syndrome Awareness -