Thursday, April 23, 2009

A whole new world

"I am so glad you posted this video"

"I never knew a baby could have seizures like that"

"I was moved to tears, but I am so glad I watched the seizure video"

"Poor baby, I never understood how difficult his seizures were"

"Thank you for sharing the video, and the insight"

These are some of the comments from emails I have received since I posted my blog yesterday. I struggled, and worried over posting that video of Jude's seizure. I wanted to help others, and I wanted others to understand what Jude is overcoming. Although I wondered if it would be like placing Jude on display, and so it has taken me 5 months to finally post that video. I am glad I did though, and I hope someone can learn from it, and find hope in the laughing video. I would like to thank the individuals that took the time to email me, or comment because you eased my worries. In addition the outpouring of support regarding Emily's charity has been amazing! We now have a website in the works, approval from the hospital, and even others that want to run the charity in their cities!

Yesterday while posting the video's I too began to learn from watching them. I finally understood what the doctor meant when he told us the seizures would not allow Jude to develop. I could finally see how detrimental the seizure activity was to Jude's brain. Jude never smiled, he never giggled, and he never tried to roll. In fact, Jude lost all his abilities when he was enduring these monster seizures. It was as if Jude were being electrocuted every couple of hours from these long lasting seizures. I can now see how important it was that we found a medication to keep the issue at bay. We now have to have scheduled blood tests to make sure Jude's valporic acid levels are not to high. I also still need to get my testing done to find out what my underlying platelet disorder is, so we can test Jude.

The therapists came back to the house yesterday to administer Jude's PT, and they have increased his therapy sessions. He will be seen twice a week now, and we will soon be adding vision therapy into the mix. That means he will receive three to four therapy sessions a week, and I could not be happier about this!

I have been very busy at work today, but I did just take some time for lunch. I ran up the street to grab some sushi from the buffet. I know sushi on a buffet sounds disgusting, but it's actually freshly prepared, very yummy, and they charge per it's cheap! Anyway, while driving I noticed three moms walking around with their young babies on their hips. The children were holding their heads up without any problems, and the moms looked at their surroundings vs their children. In my situation Jude cannot hold his head up well enough to look around, or to be carried in that manner. If I did try to carry him that way I would need to watch him and his head, vs anything else around me. I was not envious of them, but I did make a note to myself that I notice these parents all the time.....and I do. I seem to study parents more when I see them out with their children, in a way I never did prior to Jude. I wonder if those parents stop to realize how amazing their babies are. I then got into the place I was going, and I saw a lady that had a disability. She had a limp, and some features that signified she had suffered a stroke at some point. I wondered when the stroke happened, was it as a child, or as an adult. I was encouraged that she seemed rather independent, and in a weird way was proud of her accomplishment. My mind seems to always flow with activity now analyzing the world that surrounds us. I looked at everything in a different manner, I ponder whether that's a good or bad thing.

As I said, my mind races with different emotions, and questions. I hear news stories where parents take their children's life's and it affects me profoundly now. It makes me very angry. I am grateful to Jude for teaching me areas of life that I had never seen before. I am grateful for him for teaching me just how truly amazing my daughter is, and how amazing he is. Thanks Jude!

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