Last night I co-hosted a webinar for the A-T community about protandim with Dr. Joe Giacalone. Along with the several questions that I had afterwards, I also had a request to update my blog. I was very inspired by this request because I really didn't know anybody really cared or was watching for updates. I am going to try to get back to posting at least a few times a week. I have had a very rough few months and had just kind of shut the world out and hibernated into my own little world.

First of all, I have to admit that co-hosting last nights blog was very HARD for me and I was very SCARED.  I do not enjoy public speaking or being the center of attention. In fact, I was even nervous at my own bridal shower because like I said I just don't love being the focus of attention. Even though I have had a rough couple of months and have wanted to just stay in my own little world, when Dr. Giacalone joined our team and offered to do educational classes for me I knew that I had to get some educational information out to my A-T friends. As I read your stories and struggles my heart just aches for each of you and the struggles that you and your children are going through and I have to ask myself how I can just sit back and watch you and your children suffer when I believe that I have come across a product and science that has been life changing for our A-T children??? Yes, this takes a lot of effort for me to get this information out there, but if I can just improve the quality of one of your children's lives my sacrifice will have been worth it.

As you may recall from my blog, last year my mom had been dying from Huntington's disease. The care center where my mom was staying quit giving her the protandim, that she was doing so well on, and lied to us about it. She plummetted and went down hill quickly. We didn't catch what was going on for about 3 mos. and by that time she had reverted back to being a vegetable, had quit eating, and was down to less than 100 lbs. in weight. As siblings, we made the decision to put her on comfort care and let her go. She passed away August 13th of last year. We spent 11 days gathered around her hospital bed, in my sister's house, keeping her comfortable in her last days. Her death has been very difficult for me to cope with, but it has also been a great blessing as she know longer has to deal with an imperfect body.

In the fall we moved to a house out in the country on five acres--FINALLY! Even thought it is what we have wanted for quite some time, there have been a lot of changes to deal with and I still don't have my office put together!!

At the beginning of November I got very unexpected and unwanted news. We found out that we are expecting another baby again in July, even though the copper IUD that I had put in was still perfectly in place. We were the 1% that is on the statistical chart at the doctors office. We just seem to have a knack for beating the odds! The doctors only comment was that this must have meant to have been. I have cried a lot since I received this news, I have been so exhausted, and I have not felt well. I'm sure that some of this is enhanced because I am not getting any younger at age 39. I know with time that I will learn to love this baby and it will be a blessing in our home. My two year old, Rachel, was also a surprise and she has been an absolute joy and pleasure to have.

As far as my twins condition, they are still doing very well and we are very committed to giving them their protandim on a consistent basis. They are nine now and in the 3rd grade and they are still both very tiny for their age. Ben's speech continues to be hard to understand, he struggles with fine motor skills, he still drools some, and he has somewhat of a wobbly walk. Other than those things, Ben lives a relatively normal and healthy life and he is still riding his bike! Bekah also continues to do well. She does still struggle a little bit with fine motor skills and has some trouble writing, but she continues to be healthy and strong!!!