Ok, this is crazy! I need you all so please send a note ! I miss
haveing you all to share with and wonder how you are all doing so often.
I had a horrible week and it culminated on Saturday night with a
horrible flare after I forgot his needle for the first time ever.
Needless to say I was a mess and feel like the worst person on earth. I
have been distracted before and I still remembered, so why this time I
am still punsihing myself for. I can't believe how drastic his reaction
was, he spiked a temp (105) started vomiting, febrile seizure, became un
responsive, he was screaming about his head and it was like he went
blind, I was holding him close to me trying to calm him, but he kept
wailing for me trying to grab me. I cried for hours with him and
finally he started to calm down and eventually had a long sleep, but I
can't tell you how scared I was, it was a reminder of his first 18
months of life and one I never want again. I really had forgotten what
NOMID had done to him and our lives, for so long he has done so well and
then this happened, it was too much for me. It started a flood of
memories from the past, the fear, helplessness, anger and vulnerability
of it all. Once he was diagnosed, started anakinra, and diamox he had
improved so much that it is hard to explain his life only months ago, I
don't think I ever gave a clear picture to someone if I described his
disease.

I had a really crappy week and that was the finale. I had to go to a
funeral for a family friend who was murdered by her husband, she was 31
and left behind 2 boys 7 and 10 years. I have seen death, from a young
child who barely had any time on this earth to a senior who lived a
beautiful and full life, but never have I felt like this, it affected me
in a way I can not explain. I can not get her boys out of my head
everytime I look at my boys I think of them, I ache for them. Their
lives were just ripped from under their feet, it is so unfair. She was
a beautiful, smart and dedicated mother, and in an instant gone.

I also wanted to check in to see if anyone may have an idea about
finding an auto-injector. I have been trying to find on that we can use
but I am learning it is a hard item to source. Kineret has an auto
injector specifically for Anankinra (see link) but these are only for
the pre measured glass syringe. There are other kinds like for diabetics
and growth hormones that have kid decorations and hidethe needle, I am
haveing such a struggle with Michael and need to find a better way, does
anyone here know of anything or place to try? they are similar to the
EPI pen for anaphalaxis where you just hit the buttom and it puts the
needle and meds in in one quick shot.

I should run but wanted to
connhttp://www2.dupont.com/Medical_Device_Material/en_US/applications/si\
mpleject.htmlect, I hope you are all well.



Love Karen (Miko's mommy)