Monday, April 21, 2008

Miniscule Milestone & Optional Baby

Today I hit a big milestone. The physical therapist came this morning, and after she left I didn't cry one tear! Usually, after any kind of therapy or doctor's appointment, I cry for a brief few minutes or a longer period of time, depending on what I was doing. Today, I have pretty much been home all day and not one tear has been shed.

Unfortunately, I cannot guarantee the crying won't happen later. Friday was really hard for some reason. When I finally got a hold of Adam to talk to him about it, he told me to get a movie so I would stop thinking about everything. So I ran out and rented "The Waitress." I don't know if you have seen this movie, but through almost all of it the main character is pregnant. So I'm sitting there watching this movie, trying not to think about anything sad, and I see the main character holding her new baby and start wondering, "Will I ever be pregnant again?" Totally not helpful to the whole try-to-keep-from-being-emotional thing.

I'll explain a little...A week or so ago we went and talked to a geneticist about Connor's disease. I have to admit I was a little bothered...I guess they expected us to be all completely heartbroken and totally uninformed about what was wrong with him. They kept asking us what we wanted to know about the disease, and I am staring at our "genetic counselor" wondering if she really doesn't realize that it took us a month and a half to get in to see her and we haven't just been sitting around the whole time crying about something we didn't understand. She had some info for us--printed sheets from a website I have already thoroughly researched, and a pamphlet from a foundation set up by parents of a little girl who died from SMA. You'd think the pamphlet would be helpful, but nope--it sure wasn't. They were obviously looking to scare people into feeling so horrible about SMA that they would donate, but it wasn't exactly helpful to parents trying to stay positive about the whole thing.

The only good thing I will say that came out of the meeting was info about our options for having another child.
Option 1: Keep Trying Til You Get It Right
This options means we get pregnant and abort babies until we get one that doesn't test positive for having SMA. Really this is out of the question for us.
Option 2: Give It Your Best Shot
We just get pregnant and hope the odds are actually in our favor this time.
Option 3: Read the End of the Book First
Also called PreImplantation Genetic Determination, or PGD. It's pretty much In Vitro Fertilization, but they pick an egg and sperm that won't give the baby SMA. About $15,000 for the IVF, and an extra $5,000 for the egg/sperm determining. And of course our insurance gives us no coverage for IVF. Also, there is only about a 20-30% chance the embryo will it could be a total waste of money, time, etc.
Option 4: Find a Greener Pasture
Option 5: Phone a Friend
Get a sperm/egg donor, and use only one sperm/egg from us. Ok, so I hope this doesn't offend anyone, but this totally creeped me out. I guess I should be more open to all this, but it is just the idea of the baby being partly one of us and partly some stranger is just really, well, strange. And surely that would involve some IVF.

So what are we supposed to do? The occupational therapist (OT) said something later about maybe getting sperm/egg from a sibling of ours...okay, that was TOTALLY the baby would have us as parents but then have a mom/aunt or dad/uncle? How do you explain that to them? I just gave the OT a polite smile and "Hmmm."

Definitely more to think about...seems like we are learning about more every day.