Croupy Cough

Beth is starting to pick up a little, she is eating more and has finished the course of antibiotics.  The only thing she still has is a very chesty sort of seal bark type cough, which apparently is a symptom of croup.  The pediatrician things she may have croup but says it is viral so antibiotics won't help and unless she gets another fever or other symptoms, it should clear up in a week or two.  So here's hoping everthing has cleared up and all is well before the arrival of our new little one - only a cople of weeks away now!  Jo is feeling tired, big and pained, which is to be expected.  We go for our next ultrasound to get a peek tomorrow, so we are looking forward to that.

Appreciate your prayers for everything to go well with this new little one, we are trusting the Lord, and looking forward to it!

Beth on Antibiotics

Beth has had a marginally better week, with the pediatrician putting her on antibiotics as she has developed a congested cough, so to prevent any infection setting in we thought it best to nip it in the bud.  Seizure activity has reduced, but is still there, hopefully it is the sign of recovery though.  She is still not eating her normal amount, but no vomiting this week, yay!

The pediatrician still wants to wait and see before making any medication changes hoping things will return to normal after this all clears up.  We also purchased the Safe-n-Sound AHR Maxi-rider which Beth looks really good in.  We only need a few towels at her bottom to giver her a little support, but otherwise she is sitting nicely in it.  Hope to get a photo of her for the next update.

Thanks for all your thoughts and prayers again!

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

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.

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....