Matthew's a LOT better today!

Matthew started getting more "chipper" yesterday. Today he was cutting up in his walker and dancing. He was jumping and knocking all that gunk loose in his lungs and was coughing. It was very good for him. I didn't have much trouble getting him to eat or drink. No fever today either!
He is such a little soldier! He looked so pitiful the last few days. He didn't want to do anything. It's scary seeing him like that. I know my mom can't stand to see him just laying around because she knows I keep him busy most of the time.
I got a lot of email regarding the feeding tube. I have decided to go with it. I don't want to be the cause of him getting another aspiration pneumonia. I have heard a LOT of good things about it. I have not heard any "bad" things. It all sums up to one thing. The feeding tube saves little lives everyday. It doesn't have to be permanent. Just to use on his "bad" days. I can handle that. I have set up an appointment for next year to see a lung doctor and then we go from there.

I feel really dumb right now. I alway check on Matthew every hour or even sooner if he's asleep and I'm on the computer and can't see him. I just bought a lot of double a batteries and cleaned up all his toys and they are like brand new again. I couldn't see buying more toys when he doesn't even play with half the ones he has. I also put batteries in a crystal that an internet friend sent him. You set the crystal on a stand and it light up in the color BLUE. It's right above his head and the blue is reflecting on him. I got up after I typed the first paragraph of this post to check on him an my heart jumped out of my chest! He was BLUE! I jerked him up and guess what? He was fine. It was the blue from the crystal. lol It wasn't funny at the time but it is now.
It's not totally dark in the room. I probably would have caught it if was totally dark and the crystal was the only thing that was on but I didn't . lol...

Now the "not so funny part" is that when I check on him I stand there and wait for his chest to rise and fall... not once but twice. It's a habit. I even do it during the night. If I oversleep, It's really scary. I am a member of lots of yahoo groups that have kids with the same stuff matthew has. Most of the kids pass when they are in the hospital but some just pass during the night for no reason other than their brain malformation. Yesterday, I am taught another word that I care not to but I had to. I had to google it.
The word is OPISTHOTONOS

I did a little research on Opisthotonos because I was wondering what causes it. It says it is a sign of irritation of the membranes surrounding the brain and spinal cord (meninges). It may also occur as a sign of depressed brain function or injury to the nervous system. It also comes with some very rigid seizures (arching backwards). What I was wondering was if a sickness can cause this or a brain malformation? Matthew has so many brain malformations and so many seizures I was just concerned that he could get it. He certainly does have areas of his brain that are depressed meaning they dont work... I didn't know that a brain that has depressed function could get worse? Matthew's diagnosis is static encephalopathy meaning it stays the same, doesn't get worse but this is different. Anyway, I have enough to worry about but I thought I should at least check it out.

I know that He's in God's hands but I also know that he's not going to live very long with all the odds against him. If he did live until he was 40 or 50, what kind of life would that be? If you are a christian like me and believe in eternal life in Heaven, then you would know that a long life is not the answer for him. A Miracle would be nice though.
Charlotte