Tuesday, August 17, 2010

A New Fear

Yesterday seemed like a typical morning. We started a bit earlier than normal, but that was nice because Vada and I spent a little time playing with her toys. She had been up for about an hour and fifteen minutes and I had put her on her mat to play with her toys while I folded some laundry. She had been nodding in and out of sleep at that point. I was sitting right next to her when I noticed that she had begun a "jerking" motion. She was laying on her back and I saw that her arms were going straight out and her legs were coming up and into her stomach area. For some reason at that time I thought that she must be really tired. Maybe she was kind of nodding off and getting startled when her little limbs were relaxing. I say startled because her facial expression look like just that, like something had startled her.

She had woke up almost at five this morning, which was early for her, so I passed it off as she was tired. It was cute at that moment. Then I picked her up and she continued to do it. Her right arm was to my stomach and her left was kind of dangling over my arm, so I brought it in so if she was having that falling sensation it might help her feel more secure. It didn't stop what ever was happening. Then I became concerned. It hit me like a ton of bricks, this scared sensation. I kept thinking what is this that is now happening to my baby. The fear took over only for a spit second. Then I laid her back down on her mat, ran down to the basement to get Justin's phone (mine wasn't in sight and I didn't want to waste anytime). Our phones have camcorders on them. I wanted to record what was happening so I could bring it to her pediatricians attention. This way I was hoping to be taken seriously. Sometimes I feel as if people might think I'm a bit overly concerned. I hate that by the way. This is my daughter were talking about. And when things are happening like blood in her stool for over a month and nothing is being done, I get scared. That's not normal, and neither was what ever it was that was happening to her right then and there.

I did get it recorded. I took a little over a minute of these "spasm" (it seems like a good descriptive word for now. Then I put the phone down and scooped her up and rocked her to sleep. She was already tired, so I am not for sure if what had happened had made her more tired, but she did eventually stop the jerking and fall asleep.

(I am working on getting the two videos uploaded onto the blog. However, they were recorded and emailed from two separate phones in two separate ways... I think I might have an easier time with the second video. Hopefully that will happen soon.)

The day went on as normal. Pretty busy. It was "Un-Pack Your Backpack" day at school. I first went to Kilieghs school. Then because I had some extra time I ran over to watch the last twenty-five minutes of Jasmines Karate class. Afterward I drove home, picked her up (she rode her bike to and from Karate) and then we were off to her school. We didn't get home until around seven. I put a casserole in the oven that I had prepared earlier that day knowing we'd be running later than normal. I laid Vada down on her play mat while I served up dinner and got everything ready and with in minutes, maybe seconds, she was doing the same thing as this morning. It was 7:44 p.m. when I started recording. It was about a minute and a half of her doing it, then I put my phone down and held her for a couple of minutes. When it seemed to stop I sat her in her Bumbo at the table (which we do during dinner). For the most part she seemed "normal". She did twitch, like a repercussion of what had just happened, but it was very mild and spread out over a few minutes before fully stopping.

The moment she started doing it again my heart became very heavy. It felt as my heart had melted and was sliding down into my stomach. This morning after the first incident I was trying to download the video that was on my husbands phone to youtube, then I would be able to get to it easily to show the doctor. I had titled it "Spasm??". I thought that I had downloaded it correctly, but when I went onto my account I couldn't find it. I did however, find other videos on Spasm's, Infantile Spasm to be precise. Something told me to click on one of the videos and this is what I found...

After watching this I did a little searching, and watched a few more video's. I was already convinced after the first time that this is what Vada was experiencing. I called the pediatricians office and left a message. It was never returned, which is not a common thing. My calls have always been returned with in the same day. However, when it began to get late I figured I would just call the next morning. After all, most people act as if I am over reacting, so I probably was and it could wait a few more hours.

After the second time, which was a bit stronger than the first time, it reaffirmed it in my mind. Now, I'm not saying that I am correct. I have no idea what is happening to Vada, but after the second time I called her pediatrician and ended up getting an appointment for today at 10:15 a.m. I am requesting that an EEG get done immediately. If they wont do it then I am taking her to the ED where they will have to once I mention the word "seizure". I'm pretty for sure that her doctor will get her in for one right away though.

After, I spoke with the doctor I tried to send him the video's via email. I had sent a note attached to one of them asking that he send me a quick message letting me know that he had received the emails. So I was checking for a reply from him when I noticed that I had messages on Downsyn.com, and a friend request on Facebook. When I saw that nothing had come from the doctor I checked out what the messages were about. Through Downsyn another mother was contacted, and she contacted me with her phone numbers asking me to call her. It was fairly late at this point, but I called none the less. She answered, and long story short, she said my videos reminded her exactly of her daughter when her seizures first started. She gave me a lot of advice and because of her I feel confident in what I am going to do and say to get Vada checked out and if Infantile Spasm is what she is having, I feel like I know how to start getting her the help she needs. This mother, Amy, I am grateful to. I have someone who is one my side, other than my husband, and this person knows all about what we might be facing. That, is somewhat of a relief to me.

So I will have to let you know what we find out this morning.

Here are the two video's that I recorded of Vada's Spasms.

In this one you hear Jasmine laugh at a sound that Vada makes. Jasmine, doesn't know what's happening, so to her the sound was funny.

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