now we wait

Spent the night at CMH for our overnight 24 hour VEEG. Relatively uneventful but I hit the button for any behaviors that seemed questionable. They will write up a report which we're review with our neuro next Friday. Until then, we wait and hope the seizures don't continue and keep praying that the behaviors we see are not actually seizures but just funky baby behaviors. We'll see.

I have a feeling we'll only get bad news as that seems to be all we hear lately. Reading up on CDG is depressing. So many children without the ability to walk or communicate with their family members. I know it's not the case for all, and I know it's too early to tell what will become of Oliver, but it's still really hard to think about all we're going to go through with him. It becomes so overwhelming that I try to just shut it out, but these thoughts always creep back into my head. How much pain and heartache can one family take?

A very silly nurse asked me this morning if Oliver was my first baby. I told her I had another son at home who is a great big brother. Then she asked when I was going to try for a girl. I very quickly replied, "we're not". She said, wow you answered so fast, how are you so sure. Um, lady, you saw Oliver's chart. He has a disorder that he likely inherited from us. Why on Earth would we bring another baby into the world and risk them facing the same struggles and pain that Oliver is? Why would we do that to ourselves? People are crazy. It's those comments that get to me. I can understand them coming from someone who doesn't understand that this is not something Oliver will outgrow. But it's unacceptable coming from a medical professional who should know better. It's things like this, and my stupid babycenter emails that tell me "your baby is 8 months and 3 weeks and is likely pulling to a stand". I don't know why I haven't unsubscribed to those. He doesn't pull to a stand, he can't even hold his own head up, and at this point is in worse shape than when he was 3 months old. What chance does he have to ever be "normal"? Absolutely none. So we push on, day by day, trying to be grateful for what we DO have. But it's really really hard.