Maria had a bad day Friday. She had a seizure during hippotherapy so they cut the session short. On the way home she had a couple more, then more at home so I gave her a clonazepam. This, of course, turned her into a zombie for the rest of the day which is never fun.
However she actually did fairly well. She had her speech therapy session two hours later and, though she was pretty laid back, she was looking at and reaching for things, making choices, and so on. She just did everything in slow motion. I was pleasantly surprised at how good her vision was. Normally when anything is bothering her, her vision is the first thing to go. But she was actively looking and tracking even when drugged to the gills.
After about six hours she got a burst of energy and was very active for about a half hour. Then her energy crashed and she was quiet for an hour, then another half hour of activity, and so on. That was encouraging because normally she’s just a blob for about 24 hours after clonazepam.
I was concerned because her breathing was noticeably more labored; the speech therapist noticed it too. Clonazepam, like all seizure emergency meds, depresses the central nervous system and interferes with breathing – not a good thing for someone with respiratory problems. So if we don’t give it to her, the unchecked seizures could cause brain damage. If we do give it to her, she could stop breathing. Life with Maria is never boring. All I could do is keep a close eye on her all day.
Other than that, she’s been doing really well over the last couple of weeks. Her vision has been really good. Manolis took her on a walk a few days ago and every time they’d pass a plant, Maria would reach out to grab it. For her to be able to react that quickly and consistently to a visual stimulus is exciting. She’s been fairly active and lately she’s been trying to climb things like chairs. She doesn’t use her legs much though, just tries to pull herself up by her arms. We’ve had some good luck getting her to sit on the floor. Sue has had her sitting at her little table for 30 minutes or more without falling over. When I’ve worked with her I have to correct her a little, but very little. She catches herself and adjusts her balance.
Although she still isn’t walking much for us, she’s been doing a little at hippotherapy. Two weeks ago she took 3 steps, then last week 8 steps, and this week (before the seizure) she took 16. She still seems to like the stander, though she hates the straps. It’s just a matter of figuring out what she’s interested in at the moment (sitting, standing, etc.) and working with that.
And with all of this, we wonder how the changes to Arizona’s budget will affect her. They’ve already implemented a 10% rate cut for everyone getting paid by DDD so that includes me, Sue and all the therapists. Maria will be less affected by any cuts because she’s on long term care, but kids who aren’t “lucky” enough to be as disabled as she is are probably going to lose services.
Cathy is leaving town as we speak and will be away for a week so Manolis will have his hands full with Maria while she’s gone. Maria loves to get sick right before Mommy leaves just to give her something else to worry about. We’re hoping it will be a quiet week.
Sorry to hear about Maria’s recent seizure at hippotherapy. Lovely to hear before her seizure she took 16 steps, that is great!
sorry forgot to add earlier, thanks so much for your encouraging comments left on my daughter’s blog.
Thanks, Sarah. That’s life with our kids – good days and bad days. Maria certainly has more good than bad, so we try not to obsess too much about the negative things.
I wish you and Violet the best of luck.