Mira has been moving around so much lately, that I think all of the Olympics exposure over the past few weeks has led to her attempting some of the events. As in the video in the last post, Mira has been getting up into a sitting position (for 10 seconds at a time on rare occasions) whenever we put her on the floor. This has led to her crossing her legs and quickly pushing forward, which ends up in a face plant! It's looks really painful, but it is hard to catch her in time to lessen the impact. Mira thinks it's funny most of the time. She is rolling around on a blanket, which is over a carpet, so it's not as though she is hitting the hardwoods directly, but it looks bad nonetheless. I caught it once on tape - all of her movements look like some choreographed floor exercise routine I saw in the Olympics, minus the whole landing on your face part.
We started Mira on a small dosage of Depakote last week and it doesn't seem to be agreeing with her. She has been much more irritable since starting it, waking up screaming in the middle of the night 3 out of the last 4 nights. I'm not sure what affect it has on appetite, but I'm sure it's not good, Her eating is still hit or miss, which doesn't help the nighttime screaming when you are hungry on top of it. Then again, this isn't really new behavior for her, she was pretty much the same before starting the additional meds. Only now, she seems more irritable, more often. We are going to give the Depakote a few weeks (our neuro says at least 6 weeks) and hopefully it will help with her seizures.
We are still waiting on the cable for her KidCart, which was supposed to be in on Friday. We also have someone from the company that we ordered the chair through to come out and give us an assessment on a new bed for her. Mira has been periodically kicking out the rails on her crib (which she is just too big for anyway) and is constantly hitting her head against the sides when she is moving around. We looked into this bed and are going to see if we can work something out with insurance, if not, we have several alternate plans.
2 comments:
I love the video of her sitting. So exciting to see! I found your blog on the yahoo group, my daughter has infantile spasms as well. She (and her brother and sister) just turned one. Thanks for sharing, I hope the new meds will bring some improvement for her. we are struggling with meds too.
If insurance doesn't help I know this bed is for sale
http://camsinfantilespasms.blogspot.com/2008/08/bed-for-sale.html They are in TN though and the bed will probably need to be picked up.
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