Tune in Next Monday...

... to see if we survive this week.  Yesterday was a terrible day for us and Anthony and I told Mike later, usually on Sunday it's terrible and I feel awful but at least I know everyone can get back to it the next day.  Yesterday it was just awful and I knew that Anthony would be home for one more week.  One more week!  And then I watch the weather and they say that it's supposed to rain/snow on Friday Saturday and Sunday and I think if he is off next week for weather I won't make it.

I was watching my friend's son go to Communion on Sunday.  He has autism and cerebral palsy and he limps pretty good, he just had some kind of back surgery, he has had a hard time of it lately.  But there he was, walking up to Communion, taking Communion and I am so jealous.  It has been a few months since we stopped taking Anthony to church, Mike and I slept in until 8:30 this Sunday, which has literally never happened but everyone has been so sick and we have all slept so badly I guess everyone just finally crashed.  So anyway, I was thinking about it this week in church and I wish things could be different.

Anthony got a big exercise ball for Christmas, except I can't blow it up as big as I'd like.  He got a Woogly ball, and yesterday I remembered I bought him some of that kinetic sand, in its own case which closed and everything but he shoved so much of it in his mouth that I had to take it away.  Everything was kind of a fail, gift wise, but what can you do?  He also got a lot of underwear and some soft pajama pants and he's been having one million accidents and lying around a lot, so those have come in handy.

Today we went to OT, we normally go on Tuesdays at 6:00 but she asked if we wanted to switch it up and we did, just to have something to do.

This break makes me really, REALLY dread the summer but I'm trying to Live In The Moment so I'm not thinking about it too much.  That woman at his public school was so sketchy and strange about what the options are for summer, I just don't know.  But like I said I can't worry about it too much.  I read things on the Internet about kids who are sick and who die and moms who are sick and who die and I think maybe I shouldn't worry so much about my petty problems.

What else?  I guess nothing.  His respite girlfriend is switching her hours after next week, she has a class on Mondays so she is going to come on Thursday, Friday and Saturday.  That kind of stinks but it will be helpful for Mike as I am almost always at work on Friday and Saturday.

Ugh I can never wrap up these complainy posts.  Happy New Year!  Anthony will turn ten this year, I told Maria this morning and she said "wow, ten!".  I know!

Two Nights

Two nights in a row Anthony has had a seizure.  Ay yi yi, it is the worst!  Last night he was in the tub and Mike was in there with him and he just ... started having a seizure.  He was sitting up but he was very out of it, he looks like it is not him behind his eyes and he kind of drools and he is so, so still.  I mean, I don't like that he is having a seizure but he is as relaxed as I have ever seen him.  Anyway, I hauled him out of the tub and we dried him off and got a pull up on him and pulled on pajama pants and just basically told him that we were right there, that he was going to be okay.  He is so funny - he had his beads in his hands and right after he came out of it he started whipping those beads around and then rolled over, asleep.  He slept for several hours and then woke up so Mike tried to give him his medicine but he threw it up immediately.  Then he went right back to sleep and this morning we gave him his regular morning dose but I guess we should have given his his higher dose, his night time dose?  Lord, I don't know the rules with this stuff.  I looked it up and found a link that said if he throws it up in less than 15 minutes I can wait and give it to him again but if he keeps it down for 15 minutes, he's gotten it.  He usually just throws up right away, but we'll have to give it a try.

We are going to call the doctor tomorrow but in the meantime, is he okay?  How would we know?  I remember when he was diagnosed with epilepsy - by US, basically, I thought well, finally.  Finally we can get some answers around here!  But it's not true, it's just more questions with no answers, and super high stakes.

I emailed the dog service place to say that Anthony had epilepsy now too and I didn't know if they needed to know that but since we were super desperately waiting for a dog, I wanted to be sure nothing held it up.  The woman wrote back and said that the woman I needed to talk to was going to be working with matched clients and dogs for the next two weeks but she would get back to me afterward.  It's so depressing but I am determined to not let it be.  I know our dog is out there.  I just wish it would be soon.  I am praying a one year long novena and asking for a miracle.  I don't know why it's not our miracle now, but it has to be soon.  It has to be!  Something has to go our way and it may as well be this, I figure.

I mean, things are going our way.  We went to Anthony's Christmas Party at LSC this Saturday and Christina came with us.  She is wonderful, a Godsend.  He has great therapists, I love his teacher so much and she loves him.  Maybe we have too many good things going on, ha!  Time will tell but in the meantime, keep us in your prayers.