Friday, February 26, 2016

Friday Update

Last Lent, I wrote about and said nice things about one of my kids each day during Lent but this year I have given up sweets and am saying a rosary every day.  But I thought why not update on Fridays?  Maybe I can do it.

Anthony is doing fine, the last few weeks I've been taking him to swim because we don't have respite staff right now, ugh that is driving me crazy but I am breezily going by it.  Last night I went and exercised at the Y for a little bit while he was swimming but I got back in plenty of time to see him.  He looks like he is doing everything but swimming and I was saying that to one of his teachers and she said look how hard he is working! It takes a lot to hold up his hips like that!  He is great! So that was nice and a good reminder, too, that even if it doesn't look like he is working hard, he always is.

The weekends are super hard but everything else is going fine.  He has been going to Costco with Mike and has been helping!  Like Mike will tell him to get something and he will!  This feels like a miracle.

Here's his school picture and a rare picture of the four of them.  He is getting really big and tall.  He weighs a ton, he is falling away to a ton, as my sweet grandfather might have said but we are just trying to make most of his snacks healthy ones.  What else can I do?  His hair is getting really excellent but Mike doesn't love it.  He never lets us comb it so it gets kind of janky but mostly I think it's so cute, just like him.

Monday, February 01, 2016


Last night, Anthony had a seizure.  It was the same in some ways in that it was at the end of a long and rough day.  It didn't last long.  He slept a lot after.  But it was different in some other ways.  I think he was coming down the stairs when it happened, because before we knew it, he was at the bottom of the stairs, lying down.  He never lies down, but he had several times that day, which always makes me think, crap!, I should have known! Also he didn't throw up and he always throws up so I went looking for it and didn't find it, which is a weird thing to do.  He seemed to have a mark on his head and we thought, did he fall down the stairs? I was right in the kitchen, I never heard a loud noise.  It is a little too mysterious for me.

He has been doing this thing lately where he sort of bashes in to me and I hate it, I'm afraid he's going to knock me over.  But then he has a seizure and I think, does he know? Is he begging for help? I'm going to talk to his therapists about putting in some icons on his iPad for "I don't feel good" or "I have to lie down".  I don't know, it's not perfect but I want to do something.

Anyway, we are as usual plugging along.  I guess - I don't know, I feel like some days are so rough all we can do is maintain.  I feel bad when I feel grateful he has a seizure because I know that means he'll sleep well.  It's messed up but what can you do?  He has been doing very well at swimming and well at OT, he's doing well at Little Star, and we are working on it at home.  And now it's February which is closer to March and Spring!