Sunday, August 12, 2007

My first blog

Since this is my first blog, I'll just state my situation. My husband and I married at age 30 and tried for our first child at age 33. After a year or so, we got pregnant, but lost our little one early on. We tried again, but with no success. This is when we pursued infertility treatments. Two bouts of clomid and 2 IUI's later, we had our son in 2003. At 18 months old, we found out he had Fragile X syndrome (I then found out I am a carrier). We were 2 months from having our second child when we found out. Four months after our daughter was born, we found out she also has Fragile X. At this point, I'm in nervous breakdown mode. This was the beginning of our journey with therapies and specialists. It's a never ending road. Last September, we found out we were pregnant again....not what we were expecting at the time, but non-the-less happy. This time around we decided to find out the sex of the baby....boy. I was scared. Another boy with Fragile X would be a difficult thing. At 2 months old, my fear was confirmed. He too has Fragile X.

First born is currently almost 4 years old. He is cognitively at about 2 years old. He is part of a PPCD (Preschool Program for Children with Disabilities) program. This will be his second year. He is a joy, but getting difficult as he gets older. Right now, our biggest struggles are with behavior, loudness, and communication. He does have a vocabulary, but has a hard time expressing.

Second born just turned 2. She currently shows VERY LITTLE signs of even having the full mutation. She has a HUGE vocabulary for her age. Her only struggle seems to be low muscle tone. Otherwise, she's a pretty normal 2 year old.

Third born is still only an infant. We do notice a lot of the same characteristics as the others when they were infants....crying for long periods of time, difficult time eating (particularly nursing from mom), fidgety...

More later.

1 comment:

FXSmom said...

Hi fragilemom
You're story is very interesting and similar in some aspects to mine. There are a lot of us fxs moms online blogging. I think it is a huge help to see what we are each dealing with every day.

I link to a lot of them on my blog if you ever want to check them out.