<br />Hi Karen,<br /><br />I'm so sorry that you had such a bad week.
My thoughts and prayers are with you &amp; your message made me
cry!<br /><br />I have had computer trouble this year and a few of my
replies seem to have been lost in cyberspace.<br /><br />Tom is going
well.We had our 6 month follow up in June and have had great progress.
Tom has grown 4 cms after not growing for a couple of years and many
of his results have improved. His CSF is still abnormal, but as he has
a shunt, we can live with that.<br /><br />Hi doctor was so pleased 
with his results that the hospital organised some &quot;good
news&quot; publicity. As a result, Tom was front page on our regional
(Wollongong)paper, and in the prime- time news as &quot;Sydney's
Miracle Boy&quot; on one of the commercial TV stations in Sydney. <br
/><br />We were sandwiched in between Nicole Kidman's hen's night
celebrations and a major Socceroos story, and promoted during
Desperate Housewives and Grey's Anaomy.lol.<br /><br />I was sorry
that I didn't make better use of the opportunity to promote ther
condition, but it all happened in a rush with no notice and you all
know what it's like having hospital brain.<br /><br />I will try to
send a link to the stories. Both were very sympathetic and mentioned
Nomid Syndrome &amp; Anakinra specifically. Both reporters commented
on the Nomid Alliance site.<br /><br />Sorry for the epic.Tom is off
for a 2 night camp and I am paranoid about a problem with the meds but
I'm trusting it will all go smoothly.<br /><br />Again, I'm sorry you
had such a crappy week and can only hope things get better.<br />I
think sometimes unrelated events, such as the funeral, give us an
excuse to express some of the grief we have for our children, that we
normally bottle up.<br />Don't focus too much on missing the
injection, I'm sure Miko will forget it ay before you do.<br /><br
/>Love to all,<br /><br />Louise<br /><br />Tom in Australia's mum<br
/><br />Quoting Karen &lt;karenatkinson@...&gt;:<br /><br
/>&gt;<br />&gt; Ok, this is crazy!  I need you all so please send a
note !  I miss<br />&gt; haveing you all to share with and wonder how
you are all doing so often.<br />&gt; I had a horrible week &gt;<br
/>&gt;<br />&gt;<br />&gt;<br />&gt;<br />&gt;<br />&gt;<br />&gt;<br
/>&gt;<br />&gt;<br />