Michelle, thank you for your wonderful words,and Kieren I am so very
proud that you are doing your own injections, keep it up.Michelle
the reasons that we would be looking at external fixation has more
to do with Alex clotting off his big vessels, as you know his IVC
and SVC are held open with many stents and that has happened whilst
he has been on a blood thinner. He managed to clot off his Right
femoral vein from repeated cardiac caths, so to keep him up and
mobile is the only choice we have. can you imagine what 6 weeks
could do to his veins, there is also the how to keep a very active
boy in bed for that long!

As Michelle points out to all the new members, please,please get on
that phone Monday morning and set up your testing date. I think that
some of the members have already stated that your first visit is out
of your own pocket, but I know that they are very helpful there
after with travel and medication. and you will know that your child
will be followed very carefully from begining to end.This may be the
best thing you have done in a long time.We need all of this groups
help in getting this trial running at full production. By using this
drug at an earlier stage they are looking for better and faster
results with the least damage to your child.

Any body out there with any good Ideas on raising about $80,000 for
a conference which would involve not only our families but also get
our team of Doctors together, John and I had most of the medical
and social agender written down, along with location,dates and
accomodation set up before the companies we had asked dropped there
donation to about $10,000.I know that we can do this and I hope with
the success of a first that it will continue every year after, so if
you know anybody or know how we can find this kind of money, please
let us know.

love again Kate.

p.s. which of our children have had shunts placed and if so do they
have any clotting problems. If so please could you let me know how
the proceedure went, as Alex will be going through this at the
begining of August and as a former nurse can only think of what will
go wrong and not what will go right.