Victoria

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

Thursday, August 25, 2005

reprieve

The cons. really wanted Victoria in earlier in the week, it seems. Therefore, it being bank holiday ahead, she is to be admitted on Tuesday next instead. The issue is weight gain. The policy locally is that ng tubes are put in and used only in hospital unless it looks like someone is going to need to have it long term in which case parents are trained (but it seems to take longer than three days....) to site and use it. I hope, by means of olive oil and maple syrup to boost V.s calorific intake since the duocal tastes disgusting (if the smell is anything to go by) and hardly qualifies as real food. I also plan to drive over to Epsom tommorow after seeing the cranial osteopath and buy some Nutrivene which is a product researched and developed, in the US, for people with Downs syndrome. Basically it is vitamins, minerals and enzymes which help the brain development. It is jolly expensive stuff but Victoria needs all the help she can get.
The last two mornings David has got up at 4am and taken Victoria and the pre-prepared bottle I leave for him so that he can try and get as much of the milk into her as possible - then I finish it off after her returns her at 5am (with the syringe and tube). Last night I woke up at 3.30 thinking it was 5.30 and that David had missed the feed. I hadn't got back to sleep when he came in to collect her and I dozed a bit while she was gone. When she was returned I thought I would leave her until the 7am feed but then I realised that she had only had about 40mls from the bottle so at 5.30 I got out of bed .... before I went back to bed I had to express milk and then it ws nearly time for the other to be up and the next feed was at 7am anyway. In the circumstances I feel remarkably well. In fact, while we were waiting to see the Dr. this afternoon I thought that Ron looked like HE had had a sleepless night - but he hadn't!
This morngin we had an assessment from the speech therapist regarding Victoria's suck and swallow reflexes - that took a long time. Tommorow we have a second visit to the cranial osteopath. With the Lord's blessing this could make a difference to Victoria's suck (it was a bit better after the first visit) and therefore to the amount of milk she takes in. Thanks for your continued prayers.
The pressure I feel under is a result of the care of the NHS. Where one has to pay for care one can stay home and accept the fact that one's child is not able to grow very fast because of the struggles her body is having to exist - and no-one will lean on you because they don't give their services unless you are going to PAY them. What a pity it is that the NHS don't care enough to provide Nutrivene at £65 a go and haberman feeders at £40 for three.....!!

2 Comments:

  • At 8:11 PM, Blogger HadlowHouse said…

    HI T,

    Just to point out that there is quite a controversy about nutrivene and "nutrients, supplements, etc" in general for children with an extra copy of chromosome 21.

    I did a bit of research into it when my seventh child was "diagnosed" as "probably having DS" in utero.

    (He doesn't, but at that point, the internet just having been invented, I did a huge lot of reading about it)

    Hope you find something that helps you,
    Love
    H

     
  • At 9:15 PM, Blogger Noel said…

    ah yes, you get what you pay for. Sadly we experienced some of that while in England and our daughter had to have surgery for a broken bone. The doctor did not come to me afterwards to talk to me. How odd! Being the sister, daughter, granddaughter, and daughter-in-law of doctors, customer service and talking to parents after surgery are of high importance. So sad if that's being lost due to socialized medicine. I continue to pray for V's progress.

    Blessings,
    Noel

     

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