Seeing that Lola had the cluster of seizures at last Saturday’s OT appointment with Melissa, we were asked to come back and try again. This week Melissa wanted to work on Lola’s equilibrium in an effort to help Lola find her balance when she is trying to sit unassisted. Lola understands to put her hands down as protection if she falls forward, but falling backwards is a whole other thing. She likes it. She thinks it’s fun. I know Moisés said to let her fall and perhaps I am being that overbearing mother, but Melissa even agreed that falling on a hard mat is not safe. Especially with the seizures happening last week. When we get to Indy, she’ll have a room with carpet so I’ll let her fall all day long there. Until then…it’s falling on the bed.
Melissa brought out this equilibrium contraption and I knew instantly that Lola would like it. Lola digs anything with movement involved which is why she enjoys therapy so much. It’s like playing for her seeing that she can’t play in a walker or a jumperoo.[frame align=”center”][/frame] [frame align=”center”][/frame] [frame align=”center”][/frame]
After the equilibrium work, it was on to Lola’s vision. She didn’t do so well with the vision exercises which was odd because she has been kicking ass at them at home. Lola was just in a whole other world and unfortunately for Melissa…she wasn’t part of it. Melissa then tried some touch therapy seeing that Lola uses her sense of touch to make up for her vision impairment. And again Lola just wasn’t having it. She didn’t want Melissa to touch her arms, she just looked like she wanted to be left alone.[frame align=”center”][/frame]
And this is where we began to lose Lola. The teething for Lola has been brutal. We have a kid that does not cry. I don’t know why she doesn’t cry. It could be because we practice attachment parenting, it could be because she just has a tranquila nature about her or it could be that she is just happy all of the damn time! I don’t know and I try not to speculate because there was once a time when she cried all of the time. Before she was diagnosed with West Syndrome, she wouldn’t ever stop crying so the girl has went from night and day. But anyway, Lola has been crying and you can tell she’s in pain…a lot of pain. She winces, she tugs on her ears, she massages her face, she won’t eat, she pretty much just wants her pacifier. I am not one for medicating my kid for unnecessary reasons like getting them to sleep with Benadryl while on an airplane. But if she’s in pain than I’m going to give her Tylenol. This is the only thing that seems to help even if just for a few hours. I figure she’s on anti-seizure medication to prevent seizures, why should I let her suffer from pain? And while most blogs I read say parents give their kid Tylenol for teething because it is for their own sanity…I think that is a crock of shit. I mean, maybe some do, but her crying hasn’t disrupted my day at all. I just more so feel bad for Lola. So if my kid is wailing when she never does any other time and she is visibly in pain, than I am not going to sit there and let her suffer. I’m not sure how much longer teething goes on before they pop through. She handled her first tooth coming in like a champ, so I’m assuming maybe multiples are coming in? Regardless, we were instructed to cut therapy to short increments and only do four exercises (PT and OT combined) a day. So while therapy wasn’t a huge success…at least the seizure monster (as us infantile spasms mommy’s call them) didn’t show up.