Today, when I got home from work, Gracie was awake and alert so I opted for hanging out with her rather than catching up on writing reports or checking work emails. Gracie loves music so I often use this as a tool to entice her to communicate. I’ll sing a few bars then wait and look at her expectantly for her to send me some signal that she wants to hear more. Sometimes she’ll look at me, sometimes she’ll move her tongue, and sometimes, if I wait a little longer, she may make a little noise.
I’m never totally sure whether her communication attempts are intentional or not but I try and reinforce them constantly in hopes that one day they will all be intentional. Today, she had three seizures while we were singing Old MacDonald. I think at times when her brain is working hard such as when she’s trying to communicate she also has more seizures. In contrast, when she’s sleeping very peacefully, the frequency of seizures drops drastically. Thus, you see the Catch-22 that we have here. She has to be awake, alert and interactive for her brain to grow and develop, but we also know that the seizures maybe causing brain damage, however the jury is still out on that one. Her neurologist explained that there is great debate in the field when it comes to that issue.
What we do know is that from birth, Gracie has been a very sleepy baby. There are days where she can sleep the entire day away and then the next day she may be awake all day with no rhyme or reason. Right now, we haven’t figured out a pattern or routine to her sleepiness and Brien keeps telling me I need to just stop trying to pinpoint a cause for her behavior on this day versus that day and just accept that those ups and downs are a part of who she is, and part of what makes us love her.
We often comment that she looks very peaceful when she sleeps and who doesn’t treasure a moment of peace? So, this week, rather than worrying about how much she is sleeping, I have chosen to celebrate Gracie’s sleepiness by taking a nap at some point myself. I’ve never been a “nap person” but this week, for Gracie, I will try and sneak one in at some point. She suggests you try and do the same!