Hi Kate,

I was thinking of you the other day, funny to see you post. Stephen
was asking when we could go back to the fun hospital because he
misses his "best friend Alex", he saw Texas mentioned on the TV and
it sparked his increadible memory. He asked if it is winter there
now since it was hot where Alex is when we had snow. I really wish
we could have all gone together again, that last trip was great abd
now that I have had time to wrap my head around NOMID and return to
an almost normal life we could have had some fun. I really needed
you and Sheri then, but I was too wraped in the diagnosis and my own
fears etc. to take the time to know the people instead of the
disease. I am glad Alex is doing OK, surely you are looking forward
to back to school. Michael is doing well, I can't keep up with him,
but I wouldn't change it for anything. I think the terrible two's
hit Michael 10X to make up for his first 2 years though. He is a
handful! cheeky beyond reason but has a way to make you look the
other way when he is naughty. I still think back about my first
conversation with you and how much my life has changed since then.
It is almost too crazy to think I e-mailed a web site administrator,
no idea where you were or who in the world, left my number figuring
at least I'd try, I never expected anything to happen, let alone
only hours later! I will never forget that, just as I was ready to
give up, thank GOD you did. Now almost a year later I sit in my
yard watching my boys running through the sprinkler, laughing,
fighting, being kids, it is beautiful. The NIH is such a God send
for all our children and I count my blessings daily, but I will
never forget that without you I would have never found the NIH. If
you, and the original couple families had not searched, pushed for
our kids, collect every bit of info, shared your pain, experiences
and support, I would have no where to go. Thanks! have a safe trip
and I hope your trip goes well.

Sherri,

I miss you! How was your trip? Did you have a nice vacation with the
family?

Take care everyone,
Love Karen (Michael's Mommy)




--- In nomidsyndrome@yahoogroups.com, "John and Kate Barton"
<jkbarton@...> wrote:
>
> Alex and I will be up at the NIH on the 13th for a week. This is
his 2.5year
> visit. doesn't time fly. where would be our children without the
help and
> support of this trial.
>
> Hope all are well and enjoying the summer, my kids return to
school on the
> 10th. figure! Managing to get Alex down to 3mg steroids with no
problems.
> hopefully this time we will get him off completely.
>
> love Kate
>