Basically FX

Living with Fragile X Syndrome

Amazing.

Umma | November 28, 2008

Amazing is currently the most overused word in our house.  We’ve used it about Monkey’s behavior at family gatherings, his newly emerging participation at school and his always creative communication strategies.  He really just seems to be on a roll these days.
Monkey had yet another amazing day yesterday.  The three of us stayed home all [...]

If you haven’t done so already…

Umma | November 4, 2008

GO VOTE.  I don’t care who you vote for*, just do it.
There are tons of freebies out there for anyone who brings proof of voting, just to sweeten the pot. I’ve heard about Chick-Fil-A, Starbucks, Ben & Jerry’s, Krispy Kreme and even an S*E*X* toy shop in NY and Seattle, haha!
Loving this too

Lyrics [...]

Here enters the cavalry…

Umma | June 26, 2008

This is a Fragile X Memory from before our Fragile X diagnosis.
At Monkey’s 12 month check-up his pediatrician was a bit concerned about his lack of babbling.  She asked us to set up another check-up for 15 months so that we could gauge his progress.  She reassured us and told us not to worry.  When [...]

For today’s FX Memory we’re going wayyyyy back to…

Umma | June 19, 2008

June 17 and 18, 2008.  Ha.  Read the posts, these are just about the worst days we’ve had since the diagnosis.  Our stress level is at the very highest.  We’re worried, angry and feeling isolated.  But there was an awesome moment in there, that’s what I’m going to share here.
We’ve been working very hard to [...]

Discovering ASL.

Umma | June 12, 2008

Between starting EI and receiving the FX diagnosis we purchased two Baby Signing Time DVDs but we didn’t use them. Duhdee and I had decided early on that we wouldn’t let Monkey watch TV until he was 2, at least. We received the diagnosis a few weeks before his 2nd birthday and we [...]