Basically FX

Living with Fragile X Syndrome

25 Things about life with Fragile X

Umma | January 14, 2010

My twist on that once ubiquitous “25 Things” meme on Facebook.  This has been in draft form for a while. Obviously.  Sometimes it takes me a while to sort things out in my head.  We’re nearly 4 years into our journey and I’m still figuring out how I feel. Fragile X syndrome is the most [...]

Would it be too obvious…

Umma | January 13, 2010

if I e-mailed the doctor a link to THIS article in advance of the Friday appointment? I don’t know if I can take any more of his “let’s try x, y and z for a couple of months and re-evaluate” suggestions.  After 5.5 years I think the evidence is pretty strongly in favor of “THE [...]

Tearful mornings.

Umma | January 13, 2010

Monkey boy had another bad sleeping night.  He was awake at 12:30 and stayed that way until nearly 4.  Duhdee woke him up for school this morning and the second he turned his back Monkey came racing to our bed and crawled under the covers with me and pull the duvet up over his face.  [...]

So, about that Dr. visit on Friday.

Umma | January 12, 2010

The start of each new year brings changes.  Lately those changes have been related to my health insurance.  Two years ago my employer got a great deal on a crappy plan and they jumped at it.  One year ago my employer got a less great deal on that same crappy plan minus a few little [...]

That IEP meeting last week.

Umma | January 11, 2010

I’ve been chewing over the information that was shared at the IEP meeting last week and trying to make some decisions.  Trying to pick a direction to move…it’s not easy being the grown-up sometimes (heh, please overlook the fact that I do not always exactly act ”grown-up” and tend to throw hissy fits that put my [...]