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Saturday, 13 February 2010 10:55 |
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Functional MRI Provides Communication
An interesting article of news in Australia over the last couple of weeks has shown how functional MRI, a newer higher resolution MRI, is able to determine with accuracy a yes or no answer from a comatose patient. I've come across functional MRI before in relation to it being able to accurately track the oxygen levels in the brain in relation to possibly being used to prove whether hyperbaric therapy is having a effect or not, however this new capability also has exciting possibility for people that are "trapped" in their body due to brain injury. I am unsure whether this has application for our lissencephaly kids, but I will be bringing it up with our neurologist at next appointment. Translating it into something workable at home is also another story, as the machine costs a heck of a lot and obviously is as large and complicated as a normal MRI! But it does go some way to show that potentially the brain can be "read" for at least yes/no answers.
http://www.news.com.au/breaking-news/world/vegetative-man-communicates-via-scan/story-e6frfkui-1225826619059?from=news+newsletter_rss
In case the link doesn't work the text of the article is below
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Last Updated on Saturday, 13 February 2010 11:10 |
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Saturday, 06 February 2010 21:37 |
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Beth Still Not Well
We have had a dfficult week - Beth is still not feeling very well - has been very sleepy and has also developed a cough. A few vomits also, and she is down on her food. The fevers have stopped, which is great and we have seen the pediatrician twice, and Beth is now on an antibiotic as a preventative of any infection due to increased mucas/congestion on her chest.
Leonid (ABR) has posted a new blog message which is interesting around the use of standers, which made a lot of sense - as our physio is looking into a stander for Beth, this will come in useful and we wil be discussing it with her - http://blyum.typepad.com/on_abr_and_beyond/2010/02/cerebral-palsy-peacenick-practicalities-taming-the-standing-frame.ht
We also looked at car seats with out occupational therapist this week - we had look at the Columbia special needs seat, but it is very utilitarian and Beth just doesn't look comfortable in it - it is a bit bigger. We also looked at the Safe N Sound Maxirider AHR, which is not special needs but we have heard from a number of families that have adapted with them well, and the therapist says its a common choice. Beth actually looked quite good in it, so we plan to get that so that the new bub can have Beth's current seat.
Thanks for all your prayers for Beth, they are valued, we hope she gets better soon and the seizures reduce. |
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Last Updated on Saturday, 06 February 2010 21:52 |
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Tuesday, 26 January 2010 17:07 |
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Ultrasound of new Bub all clear
Jo had the 32 week ultrasound this week for our new bub, and the good news is that everything so far is looking good. Well even more than good - this bub is a big one! It's already at approx 2.3Kg which is just 200g less than Beth was at birth! If it keeps growing according to average, it will be 4.5Kg at birth but of course depends on whether it slows down etc.
Anyhow great news to hear that all looks ok, and the bub is growing well!!! The thing that came up on Beth's ultrasound was that she had larger than average ventricles (we didn't know it was lissencephaly at the time), but this little one has average, normal ones for now. Thank the Lord! |
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Last Updated on Tuesday, 26 January 2010 17:12 |
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Thursday, 28 January 2010 11:35 |
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Screaming and Seizures Return
After almost three months of minimal to no seizures, Beth started screaming for about 1-2 hours in the evening, around 6pm. She has done this once before and we believe it is related to constipation/wind pains. While she is generally not constipated, it appears every so often things get blocked up for some reason.
Anyhow, during this time she has also had an increased incidence of seizures returning, which has been getting worse. We gave her a couple of enemas to get things moving again, which seem to have worked, but everything came to a head last night, when first of all she vomited he dinner and night bottle up all over our bed and floor, and then had seizures every time she tried to go to sleep over a 3 hour period (1-4am). We ended up giving her an extra dose of Mogadon (Nitrazepam) which did help her to sleep after about half an hour.
Please pray her seizures will come back down and under control again, she is very tired and lethargic due to lack of sleep - as we all are - we reverted back to sleeping in shifts but still didn't get much. She is a little off her food as well, and to top it all off, somehow the nappy leaked this morning and wet our bed again, so we have a huge backlog of soaking and washing.... |
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Thursday, 26 November 2009 16:22 |
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Beth's Second Birthday!
Beth had her second birthday this month, yay! And, Praise the Lord, things are going quote well. She hasn't had seizures for almost two months now. This year, we had a low key celebration with family instead of a hullabaloo. It was just as good, and Beth really enjoyed the day. We thank the Lord for every day we have with her and the joy she brings us.
Check out the photos in the photo section for more!
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Last Updated on Tuesday, 26 January 2010 17:19 |
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