Genetically Speaking.....II

What are the odds? Well I no longer like that question! After hearing last Thursday that there would be a 50/50 chance of passing Fragile X to another baby and then that those odds go up another 30% if it is a boy..........the odds of us having another child may be slim to none. As much as that hurt to hear, it would hurt even more to hinder another human being. Now, don't get me wrong, I know that this is not my fault and that Kyle was a gift from God and meant to be, but we are just so unsure of the future now.

The genetics staff did take my blood and are doing DNA testing on me. The test results should be back in a couple of weeks and then they want to test my mom, dad and grandmother. It would be very unusual for the FXS to be passed down from my dad and they want to make sure where the FXS is in our family history before making any further recommendations. Of course, now Scott and Jessica are very concerned that Little Miss "Pistol M&M" may be affected too. The genetics staff has assured me that there would be a very slim chance that she would have FXS because Scott would have had to of shown some of the characteristics of it, but we still need to wait for the other DNA tests to come back. And I pray that it Scott is not a carrier!

What are the odds that Kyle will...? "grow out of this"? be able to live independently on his own? be able to go to regular school? talk? marry? have children of his own? be able to enjoy Walt Disney World?

Wouldn't I love to be able to answer these questions! The genetics doctors would too. They can not guarantee that he will not end up in a group home one day or be able to fully live independently on his own. They hope that they are wrong, but they do not want to give us false hope. Everything depends on his attitude, therapies, agencies and assistance that he is able to receive.

We already have him in an early intervention class in school, public and private therapy (occupational and speech), Medicaid, and have the ball rolling at the Department of Disabilities and Special Needs (DDSN) and the Piedmont Autism Chapter. We have bought (or have been given) books, toys, computer software, online websites, and therapy items. I also went to my first support group meeting last night.

I guess now its up to God and Kyle to see where this goes from here. All we can do is our best and try to give him the best....and PRAY! And of course LOVE HIM WITH ALL OUR MIGHT even when he's pitching a fit!