Day 16 - autism

7

That's how many spasms Andy had today. Compared to the 78 he had on Saturday it is mind blowing. He slept most of the day away. If I tried to get him to play he was too tired. I'm hoping he's more awake for the playground tomorrow.

I was able to briefly prop him against pillows, without him launching backwards. It was such a beautiful thing. We went for a walk to the store, and he was such a ham soaking up the sun in his hat and glasses.

I made him creamed corn and he loves it. His swing has been a miracle for when he gets too grouchy. His teeth are slowly making their way in.

A story I read today really hit me. In the story, it was to spread autism awareness, something I wish there was more information about. Here's a link to the story:
http://www.facebook.com/photo.php?fbid=10151904685083957&set=a.10150437256498957.453227.182605663956&type=1

Here's what bothers me...
Why is taking Jon out on a date called "working to make lives better"?

I want real integration for those with disabilities. Not this half-ass attempt that is highlighted as charity (the way what the woman did was spun, I'm NOT insulting what she did.) I have big dreams. Dreams where we all live along side each other with understanding and acceptance, not pity and charity.

When I was 16, my first real boyfriend had cerebral palsy. It phased me so little that I was completely ignorant that there was anything "wrong" with him. Granted I was a teenager and wrapped up in myself. Maybe blame the homeschooling. There was never focus from either of our parents that there was any difference between choosing him and choosing someone without CP. I was friends with him for years, together for at least 6 months, and I never even asked what CP was. It did not matter. Why does having autism matter? Those with autism are human like me and my son.

No more separation!

http://www.autismspeaks.org/what-autism/world-autism-awareness-day

Day 15

Andy woke up at 6:15, screaming into his crib rails. Over and over I removed him and gave him his stuffed animals.

I received an email from his neurologist:

The following testing has all come back NORMAL:
- Cerebrospinal Fluid (CSF) Neurotransmitters
- CSF Pterins, Methyltetrahydrofolate, and Pyridoxyl 5 Phosphate
- CSF Lactate

He did well with physical therapy. Lauren was impressed with him hyper extending less and said she could only encourage more tummy time.

I noticed when encouraging handles on his bottle that his hands automatically pull downwards if something is in their grasp. But then later on he took a clump of my hair, looked at it, and shoved it into his mouth. He then appeared horrified and dropped it! I'm still so very proud.

I checked his mouth since he was being overly fussy and noticed he had a front tooth coming in. And oh was he fussy. Daddy came home shocked how aware Andy was, and that he interacts and is excited when I sing to him. Daddy found 3 teeth cutting in.

So tonight I went and bought some pedialyte pops for tomorrow. Hoping for a little, white tooth tomorrow!

And he only had 5 spasms! That's it!

Day 14 - no rest for mom

Andy woke up a lot last night. As in more than 6 times. It was so often that I was sleep walking... Or I should say running during some of it. From my bed to his crib and back. Could be teething.

He woke this morning at a normal time, then slept for over 3 hours. He had no phenobarbital in his bottle. He is on 1ml a night for the rest of the week, then we are done. Forever.

I see him waking up in front of my eyes. His frustration is being shown in the expression on his face, he's throwing his arms more in the direction that he wants. And when he can't get to it, he's expressing himself vocally. I didn't push his stomach too much today, and he didn't cry or act like he was missing the extra food he would normally have. He had OT and I could see his progress. He didn't try to hyperextend a lot, and let his neck fall forward more. He's holding onto toys better and looking where she's trying to get his attention.

I went to babiesrus and found Born Free sippy cups. Thankfully, all pieces are interchangeable so I added the handles to his bottles. I'm excited to see what progress can be made!

The spasms have slowed down. He did have a group of them, about 50 or so I lost count, when we were out. There was maybe 6 or so throughout the rest of he day.

I'm hoping he's asleep for the night. He's already been up crying once, but went to bed to begin with at his old bed time. One step at a time.