I'm trying to write down exactly what we did today, the exact times, as closely as I can, to document it, so that maybe we can spot a pattern here, something, some...thing to help us get a clue as to what's causing these so we can make them stop.
March 3, 2006, 10 p.m. sharp. This one lasted about 2 minutes, 5 seconds, roughly. We timed it. God I've never felt so helpless in my life. This was the first one to happen to her while she was sleeping. It hit her about 20 to 30 minutes after she fell to sleep.
She's been with me since yesterday morning.. and I know, I know that she didn't fall, she didn't get stressed, she didn't eat anything she shouldn't have, she rested, she wasn't overly tired. She had a good night's sleep last night, and she had an extra good day today.
She ate well... which made me feel better, because her appetite's not been what it used to be lately. She was picky, she giggled, and played. She was happy, just her normal self for most of the day.
We were on our way to take her to the Animal Shelter at about 4 this afternoon to get her a puppy, and she said that she didn't feel good. When I asked her what was hurting her, she said nothing, nothing mammy, I just don't feel good. I told her to rest her head on the back of the seat and try to doze on the way.. that I'd wake her up when we got there.. she did for all of 3 minutes, then the next thing I knew she and Mikyla were laughing and singing and just basically being themselves.
She went into the shelter.. and she found a cage with 4 or 5 light colored tiny puppies, and pointed to the little skinniest one in the cage, and said she wanted that one. We looked at all of the dogs but she went back to those, and said she wanted the one she'd first picked out. Then she reminded me that she wasn't supposed to pick out the puppy, it was supposed to pick her out.. so we asked the lady if she'd set that cage full of pups loose and let us see which one went to Mallory and made over her.. the lady was so nice, she did.. and that little runt that Mallory had wanted was the one that went to her and climbed spang up in her lap and up her chest to give her a sloppy puppy dog kiss.
I gave Mallory the money, and she paid the fees and brought the pup home, it's a girl, and Mallory named her Princess Ann-Elise. She's a tiny little Beagle mix. Mallory was so tickled. Moreso that it's her puppy, and Mikyla can only hold it or play with it with Mallory's permission. (which she readily gave Miykla.)
She's so very little. Mallory's so petite, so thin.. God I feel so helpless and I hate this. I hate this so much for her.
She wanted to go show Mom her puppy so we went, and it was supper time over there. We ate with them, hot dogs and french fries, but Mallory was still full from the chicken she'd eaten at my house earlier. She did though want a bowl of ice cream at Mom's.
She played, she chatted with them, she was herself.. she wasn't feeling sick, she wasn't lethargic, she wasn't withdrawn.. Mom even commented that Mallory was looking good. To me, she looked gaunt around the eyes, but I'm so paranoid, I don't know if it was just me looking for something to worry about.
Sarah called while we were there, to check on them, and for the life of me I can't remember which one talked to her, whether it was Mikyla or Mallory.. one did, but the other one was busy and just said, no i don't want to talk to her right now..
When we left, it was dark, and Mallory said she was scared. She doesn't like being in the car after dark, she doesn't like the dark at all. I handed her her puppy and said there, now you don't have to be afraid anymore..and she wasn't.. she snuggled the dog and was fine.
Thinking back, I do remember her saying that her legs were hurting when we were driving home from Mom's with the puppy. I remember telling her I would rub them for her when we got home.. but by the time we got home, she either ignored that they were hurting, or they'd stopped, because she wasn't thinking about that anymore.. all she wanted to do was to give her puppy a bath.
I gave Maegan her bath at about 8:30, Mallory stayed in there with me, splashing the water on Maegan's arms, 'helping' me bathe her.. she was fine then, but I didn't bathe her or Mikyla tonight. They were more excited about bathing the dog, and it was getting late.
Around 9, I put Mal's pajamas on her and gave her her Depakote, and she took it all just fine, and I watched closely to be sure she didn't spit it into her glass of water, but she didn't. She took every bit of it, and didn't even wince. Then we were ready for her to bathe her puppy.
I ran the water for her, and got the towel and shampoo ready - a little rinse cup out..and she did it all by herself. She was so proud that she did it alone too. She got her favorite good dream cherry blanket and wrapped up the puppy so she wasn't cold, and then she put her in her basket on the foot of the bed. Then she asked me if she had to go to bed too, and I said yes, that it was bedtime. She climbed up there beside the basket and was laying there with Mikyla, watching television, and I know it wasn't 20 minutes later.. 30 tops, she and Mikyla both were sound asleep. I was right in here with them.
She'd slept for roughly 20 minutes, no more than 30 when she cried out, more like a gasp, then she was seizing. I just don't understand. I don't understand this at all. I know it's just something I'm going to have to accept and learn not to be so terrified of, but it scares the living hell out of me.
I know the times are almost precise, I have 5 clocks in here in my room. I knew we needed to time the seizure because they gave her something in a syringe that we're supposed to use on her if it lasts over 5 minutes.. and to me the seizures all seem to be a year long.
I just don't understand why this is happening to her. I just have always had to have reasons for everything, everything that happens, I have to analyse it and mull it over and work out the whys and how comes.
You know, after she stopped the actual jerking and seizing, she just fell limp on the bed. This, I'm told, is normal. Normal. Ugh. She did.. go limp.. and went to sleep. Breathing peacefully, just sleeping, a sleep I couldn't get her to wake up from.. I later learned from Sarah and Roy I'm not supposed to stimulate or try to rouse her.. to just let her rest. I know that now, eh? I picked her up then and tried to get her to open her eyes.
I just needed her to open her eyes and recognise me, recognise something. To be herself. I begged her to look at her puppy, that she was right there with her.. and the puppy was. It was just crying and crying, that poor puppy knew something was wrong. She didn't warn us before hand, she was curled up in her cherry blanket in the basket, but Stan thought to get her and put her up on my arms close to Mallory's face so the pup could learn that scent. And the puppy just sat there crying. It knew something was wrong. I think the pup is going to work out just fine for this. As it grows, it will learn.
I carried her onto the porch, the last seizure, Roy took her there, he said the cool air helped bring her around.. so I thought that's what I was supposed to do. We wrapped a blanket around her and I just sat there on the swing, until Stan said to come inside, that she was just sleeping now, and just come inside where it wasn't cold..
I sat on the couch just talking to her, trying to get her to open her eyes, and Stan went then to call Sarah, and he couldn't get mom, her line was busy, so I had him sit on the couch and hold Mallory while I came back in here to tell mom on icq.. mom called me then and she just listened on the phone while we tried to get Mallory to wake up and recognise us.
She didn't wake up, not totally, but she did start crying, oh Lord she started crying the most heart wrenching hopeless cry I think I've ever heard in my life.
Just this sorrowful weeping. I can't stand it, I wish I could trade places with her. Then she began vomiting, and just kept throwing up for the longest time, then she got quiet again, and was just sleeping, breathing softly.
At one point, she did nod when I asked her if she knew who I was.
All the while, her little puppy was just there, with her, crying right along with her.
This seizure, in comparason with the last one, was about half as bad. She didn't turn blue in the face, her lips didn't turn blue, and her legs didn't turn white. Her eyes fluttered, mostly they stayed closed, but they looked bloodshot and milky when I could see them. The rest of it was almost identical, it just didn't seem to be as hard as the last one. It didn't seem to last as long either, but then, we didn't time the last one.
Sarah and Roy came and so did Dianne and her husband, and we all sat there just each one of us wishing it was ourselves I know we were. Just all of us wondering why on earth this baby was going through this. And all of us feeling so empty and helpless that we can't make them go away.
And you know, something else occurred to me just now. When Mallory was putting on her nightgown, she told me she was burning up, she wanted something cool. I got her a tee shirt, but she said it wasn't hers.. she didn't want that, and she picked out a long sleeved nightgown.
A 4th Fever spike? I don't know.
I do know that there is one thing she did that she's done just before having the other seizures. And I know I'm most likely reaching, but I know that she's eaten something cold each time. The first one, she had been eating snow at Dianne's.. snow and popcycles. I specifically remember the snow because I can remember thinking maybe it was polluted with something. The second one, she'd had a milkshake. I remember Roy telling me that she'd just had a milkshake not long before she had that seizure. The third one, she had here that night and I know she had an ice cream, she wanted one from McDonald's with her happy meal.. and this evening, she had ice cream twice. On the way home from buying the puppy we took them to Dairy Queen and bought them a small cone, then at Mom's tonight, she asked mom for ice cream and mom gave her a bowl.
Brain freeze? I'll have to google that, see if anyone else has seizures triggered by ice cream. I know, I know, I'm reaching, aren't I?
Anyway, everyone's gone home now. Sarah took Maegan and Mallory with her, but let Mikyla sleep. She slept through this seizure like she did the last one..and I thank God she did too, they terrify her. She'll know tomorrow when she wakes up and Mallory's not here, but for now, she's sleeping like a baby.
Sarah called me a little while ago to let me know that Mallory woke up, went to the bathroom and talked to her some.. she told Sarah that she wanted to spend the night at Dianne's, so that's where they are.
I can't think of anything else to add. If I do, I'll open this up and edit it.
I sure wish I didn't have to make an entry like this. I sure pray I never have to again.
Today was her last dose of dilantin. Tomorrow, she'll get two doses of Depakote. Her doc warned them that while they were weaning her off of the Dilantin this week, she would be apt to have another seizure. I had hoped that he was wrong.. I had hoped that since she made it through the whole week without doing so, she wasn't going to.
I sure hope the Depakote works for her. I hope she rests good tonight and her little muscles aren't sore on her tomorrow. I wish she was still here so I could sit up and watch her tonight. I hate this. Oh God I hate this so much. :****(
Posted by juel at March 4, 2006 02:26 AM