Victoria

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

Thursday, September 29, 2005

Weighting...

Yesterday Victoria weighed in at 4.64kgs - an increase of 120gr over the week. We are very thankful the Lord for this continued growth. I just wish Victoria would learn to drink it a little more efficiently but I am trying to learn the lessons in patience which I obviously am in need of!

Kind offers of help during the hospital stay have been made and I shall compile them ready to discuss with Ron what he would like to have happen.

Tuesday, September 27, 2005

busses

The erratic way in which this posts occur puts me in mind of busses in Manchester - you keep looking expectantly at the horizon and see none - then you get three or four arrive 'at once'.
I spoke to the accommodation office at the Brompton this mng - they have booked a double room for me - I hope that this will be converted to a family room, nearer the time, but at least I could still take Joanna and James with me (and poss. a twin to help out with them).

Lucy has just phoned the university at Guildford again and is now assured that although there is no limit to spaces on the academic side of things, there is a limit on the 'placement' side of things (there needs to be a mentor available for her) and Lucy is (along with others...) on the waiting list. It still must remain that if some drop off after 2 or 3 months on the course it will be difficult for a complete beginner to be able to jump in and cover the missed part of the course. Not wishing to seem guilty of 'twisting' the Lord's 'arm', I would like to ask that you pray about this. It is SO very helpful to have Lucy around (as well as delightful to have her company of course).

Lucy returns from her short break tommorow mng.

Victoria is due to be weighed tommorow at 12.30pm.

Monday, September 26, 2005

Date

I had a phone call from the Brompton this afternoon. The surgery is planned for the 25th of October - we will go in on the 24th for some preliminary stuff. It will be a 10-day stay and when Victoria is released from there it will be to go home. Now we have to think about what we should do with the rest of the children. It is unlikely that Ron will stay up in London and it is possible to get a 'family room' so I could take Joanna, James and one of the bigger boys - maybe even changeover at the weekend when I suppose it will be easier for Ron to drive in to London. I think we will go there on the train. Well, this gives me a whole load more to think about...
Victoria started the day very well with feeding but it all fell apart this afternoon - she is a whole feed behind now - Lucy is at this moment trying to persuade Victoria to take her 5pm feed (at 7.30!).
As for me, I am looking forward to going to bed...

cold

I just read the post for the 17th of Sept. Thankfully the Vitamin C and garlic seem to have kept Victoria free of the nasty cough (so far) and she is better than she was on the 17th. I also gave her a couple of doses of aconite because her eyes were very watery - so that prob. helped too.
Have been reading today some techincal information about collagen and the 21st chromosome. It looks like vitamin C helps the laxity of joints a great deal in such cases.

weight and wait

My internet link has been intermittent and therefore I wasn't able to post on Weds after Victoria was weighed and had gained (a mere) 60gr (but as Thomas said, "it's better than losing 60gr").
since then I have been adding a scoop of Nutramigen twice a day to the EBM because (Praise the Lord) I am able to produce all that Victoria needs to take in a day and haven't had to make her a bottle of formula for over a week.
We had a letter this morning from the Brompton hospital. It confirmed that Victoria is on Dr Sethia's waiting list. It told us that an appt for surgery will be sent as soon as they have it and that it might not give us much notice. We have to tell them of any holiday plans we have. They also said that we should let them know if we could take a cancellation and go there at even shorter notice. We will talk about it with the cons. on the 4th of October.
I had a delightfully encouraging weekend talking (almost non-stop!) with Deborah from Northern Ireland. It is always good to have someone to talk to about the practical aspects of any new challenge one has but so much MORE beneficial to have such a preson share how the Lord sustained and encouraged them. Life is not just about 'getting through' this sort of experiecne but much more about learning what we can about our caring heavenly Father in it.

Saturday, September 17, 2005

cold

Victoria is not looking very perky today. She has a messy eye and the beginnings of a cold. I am taking vitamin C and garlic - in the hope it will get through the milk and be of benefit to Victoria. I hope this doesn't mean she will lose weight...

Wednesday, September 14, 2005

Weight

today Victoria weighed in at 4.46kgs - that is an increase of 80gr each of the last two weeks. Not impressive but going in the right direction. I think it would have been more if she had been continuing with the much-frowned-upon syringe-and-tube method of feeding - there was no waste and I could make sure she would get 650mls in most days. Some of the recent days (becasue the bottle is less efficient and more time-consuming) she has been having only 550mls - so I am pleased (though I daresay there will be those who are not....).
Off to start the next feed now...

new photo


Here's a picture of Victoria with Joanna and Richard. Victoria is sitting in the soft vinyl chair which the physio brought yesterday. It means that she can sit up and be supported and not end up in a crumpled heap breathing in a laboured manner. Being vinyl, however, it does mean she ends up soggy on her back. Still, you can't have everything. It is a good position for her to be amused by the children and plans are afoot to create a kind of bridge thing from which toys can be suspended for her to look at, bat and perhaps hold.
Yesterday we had Viv and her husband over for dinner which was great fun - he knows everything about airoplanes - model and life-size.
Victoria will be weighed later today so I will post the results when I have them. she is looking very well at the moment and we are very thankful to the Lord for her continued health and development.
Someone recently emailed me that 'if you have to have a disability, down syndrome is the best one to have'. A fun post on a d.s. website considered what the world would be like if d.s. people were in charge. One of the points was that hugging would become much more common. it was suggested that d.s. people esp. like dressing up and food also. This means that weddings are a favoured occurance because the 'rules about hugging are temporarily suspended'!!!

Monday, September 12, 2005

home again

Praise the Lord we were able to go on the camp in Suffolk after all. Victoria benefitted from the fresh air and exercise (!!). There were plenty of people to take over finishing the feeds while I organised the children (80 to 100 of them I think) with country dancing. It was a great joy to see the improvement over the week and also to witness the sheer joy on the faces of many of the children. One morning they were all there early, eager to start. Victoria seems to have grown but she won't be weighed until Wednesday. This weeks appointments include a hastily-organised cranial osteopath appt. and one with the GP on Friday at which I hope to prompt the Dr. to find out when we can go and see the Brompton surgeon and find out for sure when the op. can be done to fix Victoria's heart.
when we went away I had milk and the haberman feeder ready for Samuel to adminster while we travelled. Then I had to go back to the syringe and tube becaseu she wouldnt' feed very well from the bottle. Next couple of days V. did very well with the neonatal orthodontic teat and then she went off that so I tried the haberman feeder again. She has been using that all the time for the past 2 or 3 days and normally does OK. the handy thing about it is that I can squeeze the reservoir to get some into her and that often starts her off sucking and swallowing again.
Plans are that David will start schoolwork this week and the rest of us next week - that means I have to find a slot to do planning before Sunday.

Friday, September 02, 2005

busy-ness

Yesterday Victoria was weighed by the Health Visitor - it looks very much like she has lost 30gr over the last week : - ( In the afternoon I took Bill and Diana to Hampton Court and Victoria drank 90mls of nutramigen (formula) straight down. What a pity the speech therapist wasn't there to see it! She didnt' do so well for the rest of the day though - seems she never feeds too well in the evening.
In the early hours my alarm clock went off (as it ought to have!) at 2am, but I must have switched it off because the next time I opened my eyes I was horror-stricken to see that it was now 4.30am!!! (the previous feed was 10pm). Victoria was not crying but her eyes were open when I picked her up and she certainly drank her 95mls with eagerness! Now I shall spend the rest of the day trying to catch up on the deficiency.
Ron, the Warings and some of the children are about ready to leave for Mildenhall (then on to the camp). It looks like we will be having a much-needed quiet day.

Thursday, September 01, 2005

Wierd people

Aparantly there have been some irrelevant comments posted by some poor folk evidently in need of the Gospel. They were deleted (thanks Timothy and Lucy!) and I have changed the settings so that you have to be a 'blogger' in order to post comments. The next step will be to switch on 'word verification' which means before you can post a comment you have to read the letters in a box - which automated advertising systems can't do. I have also switched on a setting which will inform me of when I have new comments (I really find them very encouraging and helpful!) so I can instantly cut out any which are not genuine. Sorry for the inconvenience this may cause some - you could always email me privately if the comments thing doesn't work.
Philip should have left the building site today to head for home. The Warings arrived safe and well yesterday and the Lord so arranged things that I was able to go with Ron to the airport - having been released from hospital only an hour earlier. So the fellowship began - it was as though Diana had never been away! ron will be heading off tommorow, with the landrover and caravan, to drop the Warings in Mildenhall - then on to the camp site. I shall be leaving on Saturday DV.
Victoria has been more sweaty since being in hospital - maybe because I haven't been on top of administering the homeopathic stuff - maybe because it was just so hot and lacking in fresh-air in the hospital - maybe also because she was fiddled about with so much. This morning she wouldn't drink from the bottle - even though she was awake - so I resorted to the tried and tested method of syringe and tube. After feeding she was a bit sick (but I hadn't eaten cheese yesterday, honest!) but I don't think she lost more than 10mls. The health visitor is coming this morning at 11.30am to weigh Victoria again.
I am hearing, from my contacts on an email discussion group and elsewhere, that Victoria's weight gain (however small) is not normal - so I am encouraged and (of course) continue make every effort to stay on track in the aim of getting 600 - 650mls into her each day. The first thing she did when she woke up this morning (I picked her up still sleeping) was look at me and smile - it was a very precious moment!
 
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