>> Sunday, May 19, 2013
Bug is doing quite well. Really.
Although he seems to be having slightly more intense seizures, we are hovering at 1-3 a day. Not bad considering his history.
The MOST exciting thing is the noises coming out of his...well...through his lips. He isn't opening his mouth and talking but he is making the 'Old Bug' humming and chirping sounds. A lot. Almost non stop at times. It's fabulous to hear. Once in a while he will open his mouth and say something...it's never coherent and it doesn't seem to occur over any one thing but at least he is making an effort.
The single most curious thing is also the most indelicate of things: we had to give him Miralax to help him void. Usually that means Gelastic seizures or tons of Myoclonics but he only had one Tonic. One. Wow.
Still, that's not the complexity part.
The child has me on edge and in love. I would be lying if I didn't say that all the little standard baby movements aren't worrying me. Because they are. I watch him sleeping and see him twitch and stare for another 10 minutes. We (Glenn is doing it too) do all the little neurological tests they do to infants to see his responses. When he sits still, I try to rouse him. Really, he is usually dirtying a diaper and is concentrating, but my mind says; he is having an Absence seizure. He isn't. I can bring him around. It's ridiculous. But one does these things when they are willing to take a chance. Knowing that Bug's condition has a genetic component, we are taking another chance but what a beautiful chance and one that I would not miss out on for the world.
Aiden Christopher Maughan
May 10, 2013
Welcome to the madhouse baby boy.