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!

Monday, January 04, 2016


Anthony is going to turn eleven this year.  That is crazy, to me, and also not so.  I mean, I can barely remember when he wasn't around, when I wasn't thinking about him all the time, so it seems like he's a lot older than that, sometimes.

He is back at Little Star today, thanks be to God.  That is a long break for him and he has been having a severe regression, toilet training wise, so it was really getting kind of nightmarish at the end.  It's not his fault, but LORD is it frustrating!  Anyway.  He has been going to this Incrediplex place near us with Christina on Saturdays, and he did some of that over the break, and some Bounce House places, and it's been going okay.  He got a Casio Keyboard for Christmas and he likes that too.  We are in the middle of yet another insurance denial nightmare.  Mike said, and it's true, that is the black cloud hanging over our heads at all times.  One of the reports that they sent us said that his IQ was 21 and that he had gone as far as he could go in life!  I told Mike I know it's not true, but there is no way to not have a reaction to reading something like that about your own sweet boy.  There is a hot place in hell for those demons that work for insurance companies.

Anyway, here are some pictures!

Wednesday, December 02, 2015


I am just sitting around because I have off today and I don't feel that good so I figued I'd update some blogs.  Anthony is doing okay, except he hurt his toe and I had to take him to the ER.  It was two weeks ago today, I stayed at the girls' school for a few minutes after I dropped them off so I didn't see Mike and Anthony before they left.  Mike called and said that Anthony's big toe was really bothering him and it looked horrible, then when I went to pick him up, his toenail looked sort of lifted (ugh) off his toe and his therapist John said he had mostly stayed in the cube all day.  So I was driving home, I had a  babysitter for Felicity so I asked if she could stay later and she said she could so I took him the ER.  I was worried that something was broken or infected.  He did pretty well at the ER, although all they did was take a few xrays and determine nothing was broken.  They couldn't get a bandage on it, but they did get some Bacetracin on it and assured me nothing was going to get infected, so that was good.  But he missed OT because we were there for 90 minutes for basically one minute of seeing a doctor, five minutes with a nurse, and maybe seven minutes with the xray.  Whatever.  Once the toenail feel off, it was better (ugh) but now he has messed up the other one!  I guess he is kicking his door?  So I am going to figure out a way to put some kind of cushion on the back of his door.  It is always something, I wish I were more creative or handy.  Here's some pictures:

Thursday, November 12, 2015

Pictures and Catchup

Anthony is doing well, all things considered.  He is swimming on Thursday, going to OT on Wednesday.  He likes his OT a lot, she is really into music and really gets him.  She, like everyone else in our lives, really likes him.  That is a real gift, how likable he is.  And when he likes you, he'll do anything for you! Sometimes that would make me think that he doesn't like us, but it doesn't work like that, with any of our kids.  Here's some pictures!

Here's a rare picture of all four, plus the dog, plus my new vacuum!
Anthony went as Sheldon from the Big Bang Theory for Halloween.  Mike thought of it, it was brilliant!
Some of Anthony's favorite things these days are his iPad, Spotify and his playlist, and the dog.

I don't have a ton of pictures of him, he is always on the move and I am always trying to be ready for anything, ha!

Monday, September 28, 2015


It's so surprising to me how painful it's been to be in a school full of kids, some of who are Anthony's age.  Some of them are named Anthony!  I was talking to one of my classes about the year they were born and some of them said 2005, some 2006, and I thought really?  They seem so ... not grown up, but advanced, ahead of Anthony.  Because Anthony is our only boy, I guess there are just things we are not going to experience.  The boys in fourth grade seem so different than the girls.  In some ways, they are the same but Anthony has never really had that boyishness that I see in other boys his age, not for a long time anyway.

I have been volunteering for recess at the girls' school and the other day I was watching the fourth grade boys play football.  You have to watch them closely or they might fight, it's so physical.  So I was over there a lot and there was one kid named Anthony and apparently he always had the damned ball because everyone kept yelling Anthony!  Anthony, right here!  Anthony!  Way to go, Anthony!  My eyes filled with tears and I thought, great they are going to kick me out for being the crying mom volunteer, but it was very moving to me.

Things have been hard lately, largely because a) the damned new insurance company is denying us and we had to pay a doctor (like a PhD doctor) $250 smackeroos to write a report about Anthony, to prove that it's medically necessary that he get ABA treatment.  For you English students out there, I think this might be a good example of irony - Anthony has a PRESCRIPTION for 40 hours of ABA therapy a week from a MEDICAL DOCTOR but we have to get a REPORT from a PhD to say that he needs it.  Whatever.

Also, he is being kind of pushy lately and he is spitting water out of his mouth, which - there is no way to shine that up, is there?  It sucks and he does it to everyone, us, Maria (Ankony!, she yells!), he did it to Laura last week when she was babysitting (probably for the last time, ha ha boo hoo).  It's awful and so VIVID, you know.

I mean, it's just been hard lately.  We are so worried all the time, about money and about the future and getting water SPAT in your ding dang EYE, it's just exhausting.  Even though most of the time I feel okay, I know we are going to be okay, I loved the Pope's visit and to see him with all those disabled children made me be reminded of the fact that Anthony is whole in God's eyes but even still, knowing all that, it kills me that he will never run on that parking lot, never play kickball with those other kids.

Anyway.  I don't know how to wrap it up, ever, when I go on and on.  Here's to hoping either things get better or I toughen up!

Saturday, August 22, 2015

Music and Dogs

Anthony has been listening to music via Spotify on his iPad.  His team at school has been working with him getting his headphones, going to the Spotify app on his iPad, and choosing his playlist.  Yesterday was the first day we listened to music on the way home, I mean, he listened to it on his headphones, and he seemed to like it.  We always listen to music, classic and guitar-driven rock, super loud, on the way home, but he gets frustrated when there are too many commercials.  There are always too many commercials, ha!  He's doing really well with it, and I think it might be great if he could bring his iPad and headphones to church so we could all go.

Things continue to be good with our dog.  Anthony and she both seem to be settling in.  Mike noticed yesterday that she eats all her food when you give it to her.  Previously she just would eat a tiny bit and leave a bunch of it, and Mike says that shows that she's getting used to living here.  Anthony is getting used to her too, he's not as surprised when he sees her for the first time in the day.  Mike saw him sitting on the couch with her the other day, just laying his arm on her body, which is so sweet.  We have been trying to teach him to pet her instead of waving his fingers in front of her face, and we are having limited success, which I'll take.

Mostly I feel like things are going good.  We had an upsetting experience with Anthony's new pediatric neurologist but we are getting a new one.  This dude WAS the new one, so it's a pain but honestly.  We have to be able to find a neurologist who isn't a complete jerk, right?  This most recent guy had us take Anthony for an MRI, and he had to be sedated and he missed the whole morning at school.  Then the doctor's assistant called and said that his MRI was 'abnormal' but not 'dangerous' but the doctor wanted to meet with me and Mike to talk about it.  We made an appointment for the next week and went in but the woman in the office asked where Anthony was and said the doctor wouldn't see us unless we brought Anthony.  They really expected that we'd say oh, okay, and we'd leave and make another appointment for when we could bring Anthony!  I asked to see the assistant, I still had the voice mail on my phone where she said for ME and MIKE to come in and never mentioned Anthony.  This woman who came out, good Lord.  She was SUCH a jerk, she came out arms folded, chin up, churlish and childish and awful.  She said it was THEIR POLICY that the patient had to be there and I said well honey, you should have told me that because now I'm not leaving until I see that doctor and he tells me about the MRI of my son's BRAIN.  Ugh, so then the doctor came out, and shook my hand, the creep, his handshake was just like you'd expect, all warm and weak.  Anyways, he said that there were signs of perhaps a loss of oxygen at birth and that there was some grey matter which should be outside the brain was inside the brain and that's why he has epilepsy.  I said so it doesn't have anything to do with the fact that he has autism and he said nope, pure coincidence.

This seems like BS to me.  I know people who have had a loss of oxygen at birth and a lot of times they have - well like, a friend of mine's son has cerebral palsy, and autism.  I have another friend whose sister had a loss of oxygen at birth and she has cerebral palsy and intellectual development disorders.  I mean, I know Anthony has autism, obviously, but he has never presented as having intellectual disorders.  He is really smart, he was a smart baby and he is a smart ten year old.  Also, it just seems so crazy to me that he just happens to have epilepsy when he has autism too.  Like, a lot of kids with autism have epilepsy and half of those kids are non verbal.  All this plus the fact that we know like 1/1000 of what there is to know about the brain leads me to believe this is bs.  But we are getting a new neurologist and I guess we'll figure it out.

Here's a cute picture: