Last week as we were making plans to call the RE here and start the process to see if DS IUI was an option for us, and having that woe is me feeling that things hadn't gone as we wanted over the past year with donor embryos and our pregnancies, we got a reality check. While taking our son to a routine yearly doctor's checkup the ped found some suspicious spots and has now started the ball rolling to have genetic testing done on our son. These spots are the first sign of neurofibrometosis. After going home in shock and looking up this disease we were devastated to find what all could be wrong with our little boy.
Just a little bit about it for those who don't know (I'd personally never heard of it until last Tuesday). It can cause tumors to grow anywhere and everywhere on the body, it can cause cancer, blindness, developmental issues, seizures, and the list goes on and on. On the flip side it can possibly never progress past the simple spots he has now. To say we're scared is an understatement. We are shocked, worried, scared, you name it. The sad part is there is no cure. Only lots of monitoring, x-rays, MRIs, and removal of any tumors that come up.
Now the other possibility which we are SO praying for is that he got a bad case of chiggers (he could have since he and his Grandpa fish alot) and we didn't know it. I don't check his groin on a regular basis (where most of the spots are located) and when he has a brown spot here or there on his legs or arms I just chalk it up to a scare from a bite or scratch. He HAS complained of itching a time or two and I've just given him cream and told him to tell me if the itching didn't stop. I mean he's NINE. I don't look 'down there'!
So where do we go from here. Do we continue to go down the path of trying to do DS IUI or do we hold of and wait for the results of the genetic testing (3-6 months at least) before starting anything new? If we wait, what will change exactly. If we wait and find out he has this disease will it change our desire to have another child? These are all questions I don't have answers to.
Right now we are just focused on praying that our son does NOT have this horrible disease and thanking GOD for ALL the blessings we have. Times like this make the daily worries seem so silly.