Monday, March 26, 2012


I finally bit the bullet and made an appointment to have Michael evaluated to see if there is more to his speech delay.  I am hoping that I am just being overly worried and that they will say that he is just behind and will catch up.  At this point, I do think there is more to his speech delay and since he is four, I want to have him evaluated so that he can receive more services if he needs them.  The irony is that my husband was the one who was initially concerned, and now that his fears are alleviated somewhat, mine have increased.  My husband is a teacher and has seen kids with autism, I don't really have experience with childhood development.  If you were to ask me about dementia related issues, I could probably tease that out and see a lot of warning signs, but not childhood developmental issues.  For example, I definitely picked up on the fact that my grandmother was showing signs of dementia long before I was told that she was actually diagnosed with it.  My background is in nursing homes and geriatrics so I definitely fee comfortable with watching for those signs, not things like autism.  Do I think that he has autism?  Honestly, I don't think he does, but I am starting to realize that there are some really mild forms of autism or PDD NOS that some people wouldn't even diagnose as PDD NOS.  I do think that there is more to his speech delay, but I don't know what.  I guess that is why he is being evaluated.  I know that he will be evaluated by a pediatric neurologist from MGH and that the evaluation will be play oriented, but that is all.  I am looking forward to having this evaluation so that I am no longer worrying if there is an issue.  I am concerned that there is an issue, but at least knowing that there is an issue will be better than wondering.  Once I know if there is an issue I can hopefully learn what else I can do for Michael and what other services he is entitled to.

It's going to be a long couple of months til May 15th, but I am so happy that it is only a month and a half until the evaluation.  I have heard that it can take up to 6 months to get an appointment so I am happy.  I am also happy that we are meeting with the doctor 1 week later to discuss the results!


Thursday, March 15, 2012

On Being a Previvor

If you didn't know, I recently found out that I am a "previvor".    A previvor is a term, I believe, that was founded by to designate a term for people who are positive for the BRCA gene.  I now am faced with the decision to have prophylactic surgeries to remove my ovaries and my breasts.  This has been something that I have thought about for the last couple of months.  I had started thinking about it before I got tested, but the reality of this is just finally hitting me.  Last night was really the first time that I allowed myself to break down.  I was out doing my walk/run and in the middle of it, I broke down and started crying.  I started talking to my husband about what happened and he said I really need to do research and figure out what I need to do for me and that he will support me in what ever decision I make.

If you couldn't tell by the name of this blog, I believe in living a more natural life, but I also believe that there is a balance that needs to happen when living a natural life.  This decision is one area that I believe needs to be balanced.  I don't think that it is an easy decision to make: to either have surgery to remove parts of my body, that for a lot of women including me, are part of who we are as women or to use more alternative means to prevent cancer, breast and ovarian.  Right now I am leaning to not doing surgery with the potential of maybe having my ovaries out, but not having my breasts removed.  I have felt that this was going to be the way that I would go from the beginning, but I am scared of making the wrong decision and getting cancer and leaving my husband and 3 young children before it is time all because I made the wrong decision.

The New Year's goals that I have written about are based a lot on my BRCA2 + status.  I think that if I can work harder on these goals and actually meet them or at least continue working on them, I have a good chance of preventing cancer.  There is a lot of writing out there about having a gene and getting cancer.  There is also some information on how your genes are not your destiny.  I am hoping that I can make changes to my life to help change my genetic destiny.  I need to do a ton of research, and I need to find people who are on the same page as I am.  I haven't really figured out how to find these people, but I am hoping that there may be a group that I can find, maybe a support group type forum that actually meets in person.  I love that the internet allows for all sorts of info, but I really want to meet people and talk to professionals in person.  

Wish me luck on my research endeavors!