Last blog from the USA

This is my last blog from this side of the Equator. Update on our fundraising for Benjamin Revell; We raised $520 for Benjamin and Malia’s daughter.  And, it is with great joy I can say that “Luisa Rose Revell” was born this week 🙂  Congratulations to the new parents.  Exciting times! Sophia has...

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Counting down to home

Fundraising for Benjamin Revell I’ve put an auction up on my Face Book page for a service to each of my miniature stallions.  Another 3 friends have also offered the same.  Isn’t it wonderful how people come together at a time of need?  We hear so many negatives in the news and various other...

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15 days till I’m NZ bound…

Well that week went by rather fast!  Only 15 more days before I depart for home.   This week I did my part in an exercise video.  Yes I can hear you sniggering!  Believe me no one is laughing more than me! This video is for those of us with Pompe disease, showing exercises which will benefit...

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Happy New Year

Happy New Year to you all My avid reader put in a complaint that I needed to update my blog.  So here it is.  There are only a few more blogs to go.  I leave the US on the 20th of February, arriving back in New Zealand on the 22nd. Such a lot has happened since my last blog before Christmas!...

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Twas The Blog Before Christmas

As Sandra pointed out, I forgot to mention what happens after the last of those 4 treatments.  Thank you Sandra 🙂  Nice to know I have another reader lol.  xo After my last infusion here in Florida, I will move onto the extension part of the study and have my infusions in Brisbane, Australia every...

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Another one bites the dust!

It’s blog day again! 11 December, the time is speeding by until my family arrives.  I have one more infusion scheduled between now and then, so I should be in good form to keep up with them all!  My breathing is feeling pretty good, I’m excited about that!  I’m so lucky to be here, I...

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And another week whips by!

It’s blog day again.  I’m sure I just did one yesterday! I had my 8th infusion on Friday.  All went well as per usual and I slept through it as I normally do.  I could do with some of that IV Benadryl for sleeping at night time, it puts you out like a light!  A couple of people have mentioned my...

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Sunday Blog Update

Ok so last week I didn’t do a blog and thought no one would notice.  But someone said “hey you didn’t do a blog this week”!!!  I was worried people might have been getting bored with them and no one would notice if I missed one!  Sorry to my avid reader lol. Last week was...

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Sunday blog update

And another week gone! This week I want to include some information from the conference in Texas.  It won’t be too scientific…I hope! There were about a dozen topics covered, but I will just go into a few here.  The following contains some extracts from the conference program and also some...

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