The baby monitor broadcasting ventilator breaths behind me, I’m sitting on my couch trying to figure out what to post about. I didn’t intend for a whole week to pass between posts, but then, I never do. Doesn’t stop it from happening. Liam is asleep in his room and I am down the hall in the living room counting the seconds between each breath like a conductor counting beats to ensure that he’s sleeping and not seizing. Liam’s seizures seldom effect his heart rate or oxygen saturations enough to set off the alarms on his oximeter so counting breaths really is the best way to know when you don’t have eyes on the boy.
The seizures have been consistent lately. Consistently strong, and intense, and up until the last few days, consistently needing medicinal intervention to break at least once a day. Two or three a day, in truth is a pretty manageable number. There have been stretches when it was double digits every day so we’ll take 2 or three if we have to, but the boy is getting stronger now. After weaning the vigabitrin at the end of the summer Liam has had a significant increase in muscle tone only making the tension in his arms and legs during seizures that much more painful for him. Wincing in pain between twitches and tensions where before there was none.
I’m certainly not complaining about the muscle tone. It is that muscle tone that helps him in therapy at school, that helps him to roll over almost on his own now, that helps him make it more and more frustratingly difficult to get him in and out of a onezie. The reverse of an illusionist escaping a straightjacket — Liam seems determined to have his shoulder dislocated by having clothing put on.
School is going well. So well in fact that we will be adding another day this week in our effort to get him going all week-long by the end of the year. Adjusting his sleep schedule to be ready for school however is not going well at all. Liam flat-out refuses to conform to our schedule by either staying up until the wee hours of morning or by falling asleep right away only to wake up a few hours later ready to play until when he should be getting ready. We are holding to the routine in the hopes that he will bend to our will but believe me his stubbornness is unmatched (even by me).
I can hear the ventilator as the baby monitor whispers a little more than 2 Mississippi’s between breaths in a steady unbroken rhythm of what I’m guessing is about 18 breaths per minute. Slow enough that I know it’s a deep sleep. Deep enough that I can let my guard down just a bit. So I will. Good night all.
I’ll talk to you soon.