Friday we spent a couple of hours in Clinical Genetics. The appointment was relatively uneventful. Some good information, confirmed what we already knew and there were a few new bits of information.
We did see the MRI results, which are amazing. It is mind boggling what medicine & technology can do. R's largest tumor is 6mm by 7mm. That's considered large!
So, now it's continuing on with multiple tests, for all four of us, to determine the extent of the Tuberous Sclerosis and who else is affected. It is possible to have the tumors but no symptoms so we're all being tested.
One thing that amazed me was the nonchalance in regards to pre-natal testing. The doctors of course asked if we had been planning to have more children. Which we are not and this decision was made before we found out about tuberous sclerosis. Having said that, I think it would be irresponsible of us to have more children, knowing that the next baby could have TSC. Pre-natal testing is not the answer. It's too late. And a positive amnio would not change my mind. It just stunns me that that's even an option when we KNOW the possibilities. Still, having made the decision months ago to keep our family at two children, it makes me kind of sad that the decision has been made for us, regardless of our wishes, and the stress it would bring if we were to accidentally get pregnant. (Not that we will.) Just gives me a little feeling of blue, and nostalgia and blessings as to the two wonderful pregnancies and the boys that I have.
Trevy's pregancy was quite bumpy...and the doctor told me I was losing him very early on. So J & I prepared our hearts...and said we were just meant to be a two-kid family. Ha! And then God decided to let little Trev-man come along after all! And even with all the ups n' downs...I couldn't be more in love with that little kid. *sigh* But we're for sure done now! J had a snip-snip to settle that one! *smile* Not that you needed to know! lol maybe I'll add that to one of my surprizing facts!
ReplyDeleteBut at any rate...I do believe life is precious...but that doesn't mean we shouldn't be responsible too! I'm with you! Even if we *could* have more children...after all that we've been through this year...we still wouldn't. For the sake of that baby.
btw...thanks for your sweetness earlier. I think I'm coming out of the funk? I always do...eventually.
((((hugs))))
...danielle
I just read a bunch of the info on Tuberous Sclerosis. It sounds hopeful that they have identified the genes responsible and it's good that you're getting a diagnosis and treatment so early. But wow it must feel pretty overwhelming some days.
ReplyDeleteIt's so different to decide for yourself that you're not going to have more children then to have a bunch of doctors tell you that. It makes it so final feeling.
what a roller coaster of emotion in all of this. and how bizarre to find out something may have been there in your family all along.
ReplyDeletecertainly the kinds of decisions that no parent wants to face.
I think you're doing remarkably well with such a painful situation.