That is how long it’s been since Vivian has had a cluster of spasms.
We had a neurologist appointment this week and he said we are seizure free. That the startles I’m seeing in the morning are probably just that, startles.
We got to ask all sorts of questions that we never thought to ask while Vivian was in NICU. Questions about her epilepsy before infantile spasms. About her vision.
It was a very uplifting appointment. For the first time in a long time, I can say we are seeing some light at the end of a tunnel, at least for now.
He suggested we look at weaning Vivian off of her current anti-seizure medication when she turns 1-year-old, as long as she’s still seizure free. The wean would take three months. His reasoning behind this is that her brain is developing so much right now, when she is young, so we should give her as much of a chance to be medication free as we can. Even if it means being off of the medication for only a year or two before she has more seizures, at least she will have that time to develop normally, without taking such a heavy medication.
Ben and I really didn’t expect that suggestion at all, because her pediatrician has said several times, “She’ll always be on a maintenance medication for her epilepsy”. I hope that he is right and that we can do the wean. I hope that the seizures don’t come back, ever. Or if they do, that they won’t come back for a long time, and that they are easily managed, without a drug that will make her space out and not be herself.
Every drug has its side effects and risks. There is no magic cure for epilepsy, unless you’re a candidate for brain surgery, and Vivian is not such a case.
We are so excited, and so hopeful.
Vivian’s had a very good week this week. She has been sleeping in the cot again for most of her day naps, and has been going down for bed pretty predictably between 7-8:30pm every night. She hasn’t been sleeping through but except for one night where she had a very big sad, has been really easy to get back to sleep.
She is really starting to get used to her glasses, which is down to Ben’s perseverance. He does so much with her every day. He is amazing. I am so lucky that he is her Dad. I do wish I could be a stay at home mom, but Ben being home with her is the very best next to that.
We’re still on a solid food adventure at the moment. Yogurt is definitely a winner. Today, she tried some carrot & kumera (homemade) and that was another winner. She didn’t like it as much as the yogurt (I don’t blame her, the yogurt is pretty darn tasty), but she definitely didn’t hate it, so we will take that and run! We are so excited about this, too.
She doesn’t really get excited to see food coming (I don’t think she really notices either), but as soon as she touches it, she puts her hands to her mouth, and has let us spoon it in for her a few times. It’s amazing to see her starting to eat and take an interest in food, even if most of it ends up down her front. Ben and I really can’t get over it. She just keeps surprising us!