Tuesday, June 9, 2009
Another terrible night last night. Lots of screaming and crying...most of it done by Reagan. She was still in a bad mood this morning, fussing and fighting against me, I was seriously at my breaking point. Sometimes it's just more than you can take (by you, I mean me). The combination of tons of seizures and irritability is difficult to deal with, but when you're going on NO sleep, it's almost impossible! I spoke with the neurology nurse this morning about Reagan's lack of sleep. She said the doctor recommended Melatonin. Thanks, but we've tried that. I'm wondering if the irritability and constant waking up at night is related to the high dose of Keppra and the relatively low dose of B6? I asked her about that and she was going to ask the doctor, but I never heard back. I went ahead and increased it to 50mg tonight to see if maybe that helps. I also increased her morning dose of Keppra, as the doctor recommended. Now we wait to see if anything changes. Please keep her in your prayers. Reagan's been off and on fussy all day today. She was in a good mood for PT, although she refused to keep her head up. It's so crazy how one part of her body can be so floppy, while at the same time her legs and arms are so tight. I'm trying to get her into an aquatic therapy program at Texas Children's. It's a 10week program (that doesn't start til mid Sept, but they are enrolling people now) where she would get PT in the water. I think it would work really well for her because when she takes a bath it's one of the few times she actually relaxes all of those tense muscles. We'll see. I haven't heard back from them yet. I did finally hear back from the GI doctor on the results of the gastric emptying scan. She said that Reagan's emptying is delayed (boy we hear that word a lot) but it's not super slow. It's kind of in that gray area where you don't really know whether or not to treat it. In a healthy person, one half of the stomach contents should empty in 90min, based on what they saw it would take her 117min to get to that point. So what now? We're going to see how she responds to the switch to soy. Meanwhile we're going to schedule an x-ray of the stomach and an endoscopy (which probably wouldn't happen until sometime in July)...if her tummy pains go away on the soy then we'll just cancel those appts, but if not at least we have them scheduled. Tomorrow we have a super busy day, an appt with her cataract surgeon who has been on maternity leave to check the status of the secondary cataract in her left eye and then three different therapies. Should be fun. Thankfully I have some summer help starting tomorrow so I won't be running around like a chicken with it's head cut off. I decided to hire the niece of a friend, she's a college student and would only be here for the summer, but at least she comes highly recommended and I can spend the next couple months taking my time looking for a long term helper. I just didn't want to rush into anything again.