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Monday, 05 April 2010 09:22

Beth well, but lack of sleep!


All has been going as well as can be expected, even better in some ways.  Beth has had another run now of NO seizures since about a week before Timothy was born, which is just the Lord's goodness to us - one less thing to have to worry about and it makes it easier on mum looking after Beth for us while we were in the hospital.


Timothy is putting on weight - fast! - which means eating all the time - which means waking up every 3-4 hours during the night, which is leading to a lack of sleep for us all!  The good news is that although Timothy does cry when hungry, he's pretty calm otherwise - we prayed for a calm baby that would be able to get alng with Beth and not ause us too much trouble, hopefully he will continue to be like this.  When he does cry he does have a good set of lungs, but the good news is that Beth seems to be able to sleep through it, so far - the real test will come when they are sleeping in the same room together in a few months.


Beth has also gained a good amount of weight - upto 14.3Kg now.  We will have to start discussing lifts and things with DADHC as she is getting rather a heavy one to lift.  Thanks to the lack of seizures Beth has improved again somewhat and is back to her 'old' self rolling and this time talking a lot more.  We've even had some laughs lately which has been great.  She loves her new little brother, although I think she's stil coming to grips with this noisy little addition!


We have already noticed some differences between Tim and Beth in terms of the way he is gripping our finger and just other little things that we didn't really pick up on with Beth being our first.  It has caused us to revisit some of those thoughts "what would Beth have been like if..." which we had managed to keep away for a while.  It is going to be a whole different experience now with Tim for us to learn and get used to.  Hopefully we will get settled into a more stable routine soon and get some more sleep.


Thanks to all those that gave us gifts for Tim - the little man now has more clothes than he can handle!  At the rate he's growing he might not get to wear them all!  We appreciate your continued prayers.


We have been able to organise some respite to assist Jo over the coming period just while she fully recovers and settles in - looking after two is a challenge - some of our friends agree that going from one to two is a big step - even bigger than 2-3 or 3-4!  Though Commonwealth Respite and Carelink Centres we have been able to access three weeks of assistance for 3 hours per day (mon-fri).  A volunteer from Interchange will come to assist in looking after Beth just to give Jo some time here and there.  We are also applying for some in home child care services, which may provide some additional assistance for a few more weeks, through http://www.nswchildcare.com.au/bwWebsite/.


Hope to get back to regular weekly updates from now!  Thanks for your patience!

Tuesday, 16 March 2010 10:46

Timothy Arrives!

I'm happy to report that Bethany now has a little brother, Timothy, and all has gone well!  Coming in at 8 pounds 10 ounces he is a big boy!  Mum and Bub are going good, and we thank the Lord for this new little life and all His goodness to us throughout this time.  We apprecaite everyone's thoughts and prayers.







Last Updated on Tuesday, 16 March 2010 11:23
Sunday, 07 March 2010 15:34

Little Brother Nearly Here

This week has been better for Beth - less coughing and a decrease in seizures - one day we had only one seizure, which was great.  Looks like she is getting back to "normal".  Hopefully this means we can increase her ABR and looks at reducing back her meds a little bit to the pre-virus levels.  We have already reduced the mogodon a little.

But the real focus this week has been getting ready for he new little brother who should be arriving any day now!  Most things are now in place, so just some final shopping to stock up and a few other odds and ends and we are as ready as one can be for a new bub!  Stay tuned!  We continue to appreciate your prayers for a safe delivery and a healthy little one.  Praise the Lord!


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

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