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 admin@capedu.com.au.

What Really Matters?

Something made me stop and wonder over easter - what is it that really matters to our precious little Bethany?  What is it that really matters to you - when the chips are down - when all else is stripped away what really makes a difference?  What is it that we remember about someone - what do we value after they are gone?  What makes something really lasting and really "great" that we remember it?

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!

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.

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.