Monday, February 29, 2016

Update on Camille

Camille has had a total of 5 seizures. The last one she had was yesterday.
 It's very difficult to explain what is going on around here now...we are all on edge...all the time. We are always watching her and if she makes a funny move, or pauses for a second we all jump and react. If she is resting on me and slouches just a little, I check on her, if her fingers flinch, I check on her. She can't go anywhere alone. She is rather sick of us watching her every move, but what other choice do we have? So far we have been able to catch her when she goes unconscious and we've been able to prevent injury.
Her seizures:
The first one was already blogged in great detail. Dec. 28th.
The second one was Feb. 12th. Chris and I were not home so the kids called us. They also called 911. We took her to the hospital, but ended up going home because she was back to normal before they could get us in. Sam witnessed her first one, she freaked a little at first. Then realized she was the oldest one home and had to go help.
The 3rd one was on Feb. 18th. We were at the church playing basketball. She started looking at the lights on the ceiling as if she had never seen them before and she was spinning around slowly. I was watching her, it was odd so I walked over to her to see what she was doing, but she was not there...she was already unconscious. I grabbed her and laid her down and she started convulsing. She was hitting her head on the ground so I cradled it in my arms. It always seems so long, but really it's about 30 seconds. Then she is unconscious without the convulsing for another 20 seconds. They have all been different from the first one in that she is breathing during her seizure and you can hear her. The first one she was choking and turning blue-gray. The boys ran out of the gym, scared and crying. She is really out of it when she comes around. We wait about 20 minutes and then we sit her up so she can breath better. After about an hour we move her and we get her home. She is still not 100% yet. We ask her a lot of questions, and try to figure out what she remembers last. We always ask her what her favorite color is...pink. She has a lot of her little absence seizures during this time. 1 every 3 to 4 minutes. Sometimes more. She also cries a lot when she first comes out of one and she moves her legs a lot and moans. She also puts her hands around her face, especially her mouth. She holds her lips funny and her tongue doesn't work very well. Then she complains about her stomach and she feels like she is going to puke, if we move her to fast, she does. When we get home, she sleeps for about 3 hours.
Her 4th one was on our Anniversary in Vegas. Again, Chris and I weren't there, (Chris hasn't had to see one yet) so the kids call us. (we were at a stupid timeshare meeting)  She was in the bathroom curling her hair, but Nico was watching her and he said she was looking at the lights again. He went out to tell the bigger girls and when they all came in she was slumped over the tub. Both hands were in the tub but she didn't hit her head which is a major blessing. Sam got her out of the tub and laid her on the ground. She does the same stuff...convulses, moans, moves her legs, cries, wants to puke. It's awful. It takes her about an hour to recover and she is very tired. It's hard to watch. It's hard to feel helpless.
The 5th one was yesterday, the 28th. She was getting ready to go to GG's house. Some of us were in the van already. She had gotten a strawberry, walked outside to the front step and started her slow spinning. I started screaming, "she's spinning." and Christopher and Lindsey took off running. I was parked way down the driveway. I yelled, "catch her." Lindsey gets to her right as she is starting to fall. We all get there and Lindsey is like, where do I put her. So she lays her on the ground and she starts convulsing. And making a really weird noise, the noise while convulsing...ugh   I am just so thankful that Lindsey got to her she was on the cement steps. I am also amazed that while she was spinning (it's very slow) she didn't step off the top step and fall. She has her seizure and we are trying to talk to her. We ask her what day it is and she says Tues. We tell her that it is Sunday and then ask her again. She says she knows, but can't think of it. We tell her again that it is Sunday. We ask her again and she can't tell us. It's awful. I cry every time. I tell Lindsey that I can't believe she made it to her in time. I am just so thankful. Lindsey says she doesn't know how she did it and that she doesn't feel winded. We decided that Grand-dad pushed her along. Nico starts crying and he says that he knows angels are watching over her every time she has a seizure. We decide it's Grand-dad again.  We turn her around so that her head is higher than the rest of her. We sit her up. After about 30 mins we bring her inside. She is so tired. She rests for another 30 mins. I ask her if she is ready to go to GG's for dinner. She says yes, but we shouldn't have moved her yet, she pukes in the car on the way over (I had a chip bag in the car thankfully) and then sleeps for about an hour at GG's house. The strawberry is still on the front step where she dropped it. :(
Nico, Christopher and Andrew are all in, I don't know, distress. They can't sleep at night, they cry about things, question things. Christopher has major anxiety right now. But my sweet Lindsey is struggling too. She is always by my side. She is quiet but observant. She is so quiet. She is really struggling in her own way. It was just her and I on the way home from GG's and we both just cried. We didn't talk, we didn't have to. I am surprised at how much this affects all of us.  I am always on edge. We all are.

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