Friday, August 14, 2009

Frustration

So last night wasn't exactly the great first night we were hoping for. Reagan did not want to go to sleep and we were up til midnight with her. Finally she dozed off in our bed and we didn't even attempt to move her (at least in our bed we have the option of co-sleeping). The problem is, co-sleeping with Reagan is often shortlived and she woke around 2. I got up with her, gave her a bottle and when she finally fell back to sleep I put her in her room. She slept in a little this morning but woke up in stinker of a mood (and a stinker of a diaper). It was hard to get much done today housewise, Reagan was very needy and having way too many seizures. The bigger ones that really worry me and leave her zoned out for a minute or two afterward. I don't know if this is a different type of seizure or what. I spoke to her neurologist today about all of this and didn't really get much of an answer. His suggestion is to spread out her clobazam into 3 doses. Right now she's getting it twice a day but he said that this medicine in particular tends to have a short half life so it may be wearing off overnight and throughout the day. So we would divide up her current dose to 5mg in the am, 5mg midday, and 10mg at night. I'm not sure if this will do anything, but he's the doctor so I'll humor him for now. I'm just so sick of watching her have seizures. Today has been one of those days where I'm feeling particularly down about it. I try to stay positive and hopeful but some days it's just so hard. How much longer can she continue to have continuous seizures like this? How much permanent damage is being done? It's frustrating. Please keep her in your prayers!

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