Ayden is officially enrolled in the STX 209 trial as of Monday. If you haven't heard about STX209 (arbaclofen) then you probably haven't been reading my blog or following me on Facebook. Here are just of few of the more recent articles. http://www.ucdmc.ucdavis.edu/publish/news/newsroom/6887http://theautismnewswire.com/NewsITems.aspx?newsID=212http://healthland.time.com/2012/09/20/the-first-drug-that-could-help-social-withdrawal-in-autism/http://www.sciencedaily.com/releases/2012/09/120919142140.htmhttp://www.npr.org/blogs/health/2012/09/20/161436289/new-experimental-drug-offers-autism-hopeIt's...
Wednesday, October 31, 2012
Friday, October 26, 2012
Life Without the X
I often wonder what life would be like without Fragile X. How much easier would it be to not have to prepare so much for changes in routine or even simple things like a trip to the zoo. I spend much of my days planning and keeping a schedule going to keep Ayden comfortable. We learned early on that we can only push him so far before he breaks. It's a difficult balance to keep, pushing versus comfort. After 5 years, I usually walk that fine line pretty well, but every once in a while...well, it's...
Wednesday, October 24, 2012
CBS Detroit Most Valuable Blogger 2011
I just found out this blog was named one of CBS Detroit Most Valuable Blogger for 2011 in the Lifestyle and Family category. I don't know how I was nominated or anything, but was pointed toward the award from a friend. Very exciting for a blog that only gets around 50-100 readers each post. :)
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Let's talk about the word...respect.
Well, let us just get right to the heart of this today with a picture....
...or two.
The internet is in an uproar this week about this. At least the people I associate with. You know, the ones who don't promote hate speech.
I've been reading articles and blog posts the past few days about these comments and just felt the need to put it in my own words. I'm not nearly as eloquent as so many other writers on the...
Monday, October 15, 2012
Shatter the Silence
In November of 2010, we were blessed to learn of a surprise pregnancy. Although unplanned, our baby was not unwanted. Our elation was short-lived; however, when I woke up to cramping less than a month after finding out. I never imagined that I would have any problems. I had two children, both planned pregnancies that progressed just fine. It was apparent as the day progressed though that something was wrong. It was a weekend, but I called our on-call doctor anyhow. There...
Friday, October 12, 2012
STX209 Trial
Ayden turned five in July, which meant he finally was in the age range to participate in the STX209 trial I've posted about a few times. At the time, we were unsure about putting him in it and actually had him on minocycline to see if we could see some improvement from that. With only minor changes happening with the minocycline, we decided to do the pre-screen for STX 209 to see if Ayden even qualified and what all the trial entailed.Turns out, he did qualify for STX 209. We decided to go ahead and enroll...
Thursday, October 11, 2012
Happy 8 Months, Emmalina!
I've been really terrible about doing monthly posts for Emma. I think in some ways I'm still coming to terms with the fact she has Fragile X. It seems an odd thing to say because we've always known it was possible and have known for sure since she was less than a month old. More so than with the other kids, we were totally aware of what having a child affected with Fragile X could mean. Regardless, every day with...
Wednesday, October 10, 2012
Speech Video 10/10/2012
I mentioned in my last post that speech was finally starting to come for Ayden. Not in just little blurbs where we hear words and they disappear either. We are consistently hearing words and sounds now made with purpose. In addition to that, we are also seeing more and more attempts to communicate with both adults and peers. And he's trying. Some days we need to push him, but he is attempting to say words when we request him to do so and is beginning to succeed. He still has a...
Saturday, October 6, 2012
Parent Teacher Conferences
Our school district is doing conferences a little different this year than normal. The simple explanation is that the district has a lot of our elementary schools designated as Michigan Focus Schools and this is part of their action plan for 'closing the gap'. I'm not going into the whole Focus School explanation here - but you can obviously look at the link above if you want. The idea with the new conferences is that instead of being reactive by having conferences at report card time, we are being proactive....