i’m an adoptive mama to 2 sweet boys in 2 very different open adoptions. also wife, acupuncturist/herbalist, friend, sister to 3 brothers, and cousin to many.
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About | the night kitchen
the night kitchen
thoughts on being a family through adoption, and other things
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June 11, 2008 at 8:52 pm
Hi,
Google Alert brought your blog up because it contained the word neurofibromatosis. I live a little over an hour from DC and have 2 young adult children with NF2. My daughter is 23, son 18.
If you are interested in talking/emailing now or sometime, let me know. If you need info anytime, feel free to contact me. No pushing here, just an offer.
If you aren’t already a member, you might also be interested in a support group that discusses NF2 research and drug trials, too. There’s another that is for people who have NF2 and those who love them, but it’s pretty heavy duty and lots of email. You may even be a member. I mostly skim digests from the group as time doesn’t allow me to do a lot more most days.
Since you’re an herbalist, I’ll mention that there is a current trial using Bio-30 aka Propolis from New Zealand.
My son has had surgery on a Vestibular Schwannoma and had his hearing salvaged along with his facial nerve function. It can be done. The question is one of how long it will work because they virtually always grow back in NF2 patients. But I want you to know there’s hope out there and more people seem to be getting interested in research. In fact there’s a new study beginning at NIH. If you aren’t part of it and might be interested, I would be glad to give your name and contact info to them or get theirs to you. If you aren’t interested, again, no pressure.
God bless.
…Donna
November 8, 2009 at 7:45 pm
I’ve been searching your blog for an email address and failing to find it–I’d love the password, if that’s alright: susan.b.antimony (at) gmail (dot) com. I have a wordpress blog if you need to check my bona fides: susiebook.wordpress.com
July 26, 2013 at 3:30 pm
First of all I want to say excellent blog! I had a quick question which
I’d like to ask if you do not mind. I was curious to find out how you center yourself and clear your thoughts prior to writing. I have had a tough time clearing my thoughts in getting my ideas out. I do enjoy writing however it just seems like the first 10 to 15 minutes are lost just trying to figure out how to begin. Any recommendations or tips? Kudos!