Thursday, September 18, 2008

long day already

this morning was my genetic testing. I called my biological mother while I was there because the genetic counselor had some additional questions. Calling Brenda can be strange unto itself. We rarely speak, sometimes going a year or more without talking. She suprisingly answered and we were able to get even more info from her. WOW. I couldn't believe the amount of info. grandmother-breast cancer both breasts, died of ovarian cancer. sister-breast and cervical/ovarian cancer. grandfather-lung cancer. great grandmother-leukemia. 3 great aunts-all died of ovarian and cervical cancer. my mother herself had a stroke a year ago and they found a lump in each breast. she doesn't have insurance so she never went back for additional testing. WOW.
the counselor and I spoke at great length. she went thru all of the risk factors and data and percentages and such. she gave me all the facts. by the time ovarian cancer is diagnosed it's usually to late. you can get the gene for ovarian and breast cancer from your father as well as your mother. if i pass this gene on to my children not only are my girls at a very high risk for this themselves but my boys for male breast cancer, prostate cancer, and pancreatic cancer. when tested positive for these 2 genes the most realiable remedy is a double masectomy and a hysterectomy. some people try preventative chemo, but with my female problems already, i have to have female surgery no matter what, and that would require me to take meds that would increase my risk of breast cancer. and if my test comes back positive my risk is already 87% so no doctor would give me meds that would increase that risk. she had pages and pages of info and facts and statistics. I'm glad to have all the info but HOLY COW.
she was great and immediately made me feel at ease. she said she would be here each step and always available. she said we'd take it one piece at a time and she would explain everything and tell me where we need to go next. i felt very comfortable with her and her knowledge.
i did go ahead and sign my life away for the testing. dang near more signatures than buying a house. all the forms. my blood is now on it's way to the only lab in the united states that does this testing in Utah. wow. this whole process is mind boggling.
anyways it will take 2 to 3 weeks to get the results. since only 1 lab does this in the whole USA there is no rushing the results.

in other news....
emily is doing good. she's really enjoying school. she's making friends and doing great with her school work. she's excited about moving and finally getting her own room back. She's counting down the days until her 8th birthday! I can't believe it's coming this soon!
jace is doing pretty good. he had a rough time last night. he spent a bit of the night doubled over in the bathroom in pain, uncontrollably shaking, and pouring sweat. his stomach hurt so bad his toes were curling up. called doc and he had me push different areas of jace's stomach and do a few simple tests. ruled out appendicitis and got him comfy and to bed. this morning ok. he checks in with his pedi GI at the UofI the 2nd of oct so we will get more info soon. he's doing good in school and enjoys getting to be with his friends.
ben is doing good. we had his IEP on monday. the teachers said he's doing really well. he's even sat on the potty for them. we got his IEP in place and i think he has a great group of teachers and therapists and i'm super pleased! he's trying to figure things out and sometimes gets pretty frustrated. lately we've been having some strange fears pop up that we are trying to figure out how to deal with on the fly. they suggested we have a behavorial therapist come into the home and help get some ideas on how to set up the environment to make it easier on ben.
ari is doing well. she started music in motion this week and loved it! she's still loving her gymanstics class! She met her new occupational therapist today and got an IFSP in place for her! so excited to get that started.
Brian is ok. lots going on at work that are putting quite a bit of pressure on him. he's not dealing well with, or with everything going on with me right now. We aren't talking much, and things are pretty distant and tense. neither of us are sure where to go from here.
we sign the papers and get the keys for the house this evening. hopefully all goes well with that.
i'm going to go lay down on the couch and watch a bit of tv before everyone gets home and the evening begins.
as always i will update as soon as we know more.

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