Saturday, 27 February 2010 15:43

Beth is feeling a little better!

Good news, Beth is feeling a bit better the last few days.  Although she still has a cough, it does appear to be clearing up, and she is starting to increase her food intake again, which is another good sign.

We have also been able to get the ABR machine onto her a lot more in the last few days, without any complaint, so that is another bonus.

We had physio come out this week, and she has had a look at the information we supplied concerning the HOPSA dress, and she likes the look of it.  She is going to see whether we can get it through any funded means if possible.  She is also going to start the process of with getting a stander for Beth as well.  I passed on to her a link to Leonid's videos on the standing frame, so we are interested to see what comments she has to make. 


Physio also gave us the contact details of the incontinence support people, which we have contacted and they are going to arrange to come out to assess Beth - if it works out they may be able to help support with supply of nappies for Beth.


Latest news on the new arrival also known as baby "Bean" at the moment, is that the ultrasound showed steady growth, slowing a little - now on the 90% centile for weight.   All looks good in terms of brain etc, and the obstetrician is happy with progress.  Apprecaite your continued prayers for a safe arrival for bub and mum and for a healthy little one!

Last Updated on Sunday, 07 March 2010 15:34
Sunday, 21 February 2010 14:38

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!

Saturday, 13 February 2010 11:04

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!

Last Updated on Saturday, 13 February 2010 11:11
Saturday, 13 February 2010 10:55

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.



In case the link doesn't work the text of the article is below

Last Updated on Saturday, 13 February 2010 11:10
Saturday, 06 February 2010 21:37

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.

Last Updated on Saturday, 06 February 2010 21:52
Thursday, 28 January 2010 11:35

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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