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Beth Gets Stander and HOPSA dress

 

Recently our Physio has trialled Beth in a number of standers and we have obtained funding from KidsFund to get one.  It is being delivered now.  This will provide Beth with a vertial "weight bearing" position, which will be a good change.  The only thing I don't like about the stander is the fact that she is strapped in so tight, she has very little movement.  To me it doesn't look like a "fun" thing for her.  That is why we looked into and got Beth a HOPSA dress.

 

The HOPSA dress also puts Beth into a new vertical position for her, and is more like a swing/sling.  This means that Beth is able to have her hands and legs free to move around far more than in a stander.  We like this as it allows more interaction in this positon.  See the photos below to see how good Beth looks.  We only added a couple of supporting wraps one at the back of her head and one across her chest, although she didn't really need them, they were just to provide extra stabilisation.

 

We purchased the HOPSA dress from CAP Educational - who were great and so flexible with us - we highly recommend them - they have a range of educational products and accessories.  They can be contacted at 07 3713 7120 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Last Updated on Thursday, 09 September 2010 10:15
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Wednesday, 19 May 2010 07:12

Beth Has a Cold

This week Beth has developed cold like symptoms - gurgly in her throat, gunk in her nose.  It doesn't appear to be too bad, but as it is coming into winter over here, we hope it doesn't develop into anything more.  We are dosing her up on vitamins, applying the vicks, and seeing how things go.  This has also not helped her seizures which are still occurring.  We appreciate your prayers for her.  We've also managed to get an extension to the help we have had - for the last three weeks we had assistance from a volunteer who came in to look after Beth for 3 hours a day, just so we can get things back on an even keel.  We have been able to get an additional 3 weeks of assistance for 3 hours a day for only three days a week, but it all helps!

Tim so far has avoided catching anything, and we hope he remains that way.  He is now actively tracking us, more intently staring at us and we have been able to get some good smiles out of him as well!  He seems to be settling a little which is good, and once or twice he has skipped his early morning feed, and we have had a chance to sleep through...  it's great to get a taste of a full nights sleep again!

Last Updated on Thursday, 20 May 2010 09:56
 
Wednesday, 12 May 2010 08:37

Seizures Starting to Come Back

Well we have had a good week, and things are settling in, but unfortunately Beth has been getting some seizures coming back through.  At first only one spasm a day but of late we have been having upto 20sec length clusters of spasms.  We have increased her Vigabatrin dose by an additional 250mg at night, seeings we have not increased it for quite a while, and it will have lost some of it's effectiveness due to her increase in weight over that time as well (put on 3Kgs or so).

Please pray that these seizures will come under control again - she really is a different girl when she doesn't have them at all - they do knock her around and she sleeps a lot more trying to cope with them.

Little Tim is going great - still screaming, still getting fatter!  So far so good.

Last Updated on Thursday, 20 May 2010 09:57
 
Wednesday, 05 May 2010 17:27

Our little screamer...

 

We have had a good week, however, little Timothy is a very demanding little man.  Beth is finding out how loud a little brother can be now they are sleeping together in the same room, but she is tolerating it very well.  All is good however, we are trying out some gripe water to see how he goes.

Check out the new photos of Beth and Tim in the photo gallery.

Beth has started to have the odd seizure here and there - just a single "spasm" every other day.  We have had a great run without any seizures and she has put on a lot of weight so we expected that they might return. We will see how it progresses but the neurologist says we have a little room to move in increasing the vigabatrin if needed.

Last Updated on Wednesday, 05 May 2010 17:52
 
Tuesday, 27 April 2010 12:32

Doctors Appointments!

 

It has been a busy week this week with appointments for Jo, Beth and Tim!  But good news all round - Jo is all clear now, Tim has had his first checkup with the pediatrician and everything was all ok - Tim seems to be going great guns, putting on enough weight and no issues as yet.  Beth had two appointments - with her neurologist and with the pediatrician, and both are happy at the fact that Beth isn't really having any major seizure activity, so we are going to remove the mogadon (nitrazepam) from the mix.

 

 
Tuesday, 20 April 2010 15:37

Beth Much Better and Timothy Growing Fast

Beth and Tim have had a good week - Beth has recovered from the cold, only a few coughs and splutters left, and Tim didn't catch it at all, and is eating us out of house and home - well out of formula anyhow! - so he is growing well too!  Thanks to everyone that prayed concerning the cold situation, it was greatly appreciated.  Hopefully as we head into winter we won't get anything else - everying is dosing up on their vitamins!

We are all getting into a bit of a routine which is good, and things are starting to settle down.  We are now looking for the day when Tim skips a feed at night so we can get some unbroken sleep for a change!  Hopefully next week I will upload some new photos of Beth and Tim.

 
Tuesday, 13 April 2010 09:20

Beth getting over a cold or flu

 

Unfortunately Beth came down with a runny nose and a sneeze last week, and has been getting over it every since.  Couple of really annoying days where she was having more difficultly eating because of the blocked nose and whatever else blocking her sinuses and getting into her throat - she vomited twice as she was eating due to the nose being blocked, then food blocking he mouth/throat, so the only way for her to clear it was to vomit up - at least it also cleared out the yuck in the back of her throat as well.

 

But all that said, otherwise she has been going well.  We have seen the signs of some "stucky" seizures here and there, but that could simply be due to the cold/flu - she did have a few periods with a temperature.  And of course she had to pass it onto daddy who has been battling with it this last weekend.  But we are both feeling much better now!

 

Timothy is going and growing well - he has avoided the cold thus far, we are praying it stays that way.  Jo has also narrowly avoided the cold, she ha a couple of days with a sore throat, but we all started full on wit the garlic, vitamin C and Barley Life and she managed to avoid it.  So Jo has been mainly looking after the little man so he didn't catch anything and I have been looking after Beth as we were in it together anyhow!!!

 

Tim has put on heaps of weight and is still quite demanding for his bottle - so all is well thus far and we are still noticing little things he does that Bethy didn't.  We go back to see our pediatrician for both Tim and Beth next week.  We even had a night up in Sydney with Jo's mum and dad which was Tim's first long car trip and adventure - all good - he's like Beth and sleeps in the car which is GREAT!

 

Thanks to all the parents for their help the last few weeks, it has been greatly appreciated.  We have also been able to arrange some respite assistance for the next three weeks - 3 hours a day someone will come and help out and look after Beth.  We have also applied for some additional in home childcare assistance, but are not sure whether that will be granted - will have to wait and see.

 
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