Baylee's story in Idaho

Here is the link for the story on Baylee's OMS in Idaho. WWW.kpvi.com/global/story.asp?s=12027597 I think he did a good job with it. He wanted to do a more health care reform story than anything. But as long as it is talking about OMS we are good.

Baylee on KSL

Last night Baylee was on the Salt Lake news. They did a story about her OMS. They're doing the story again tonight in Idaho falls, but here is the link to the video of last night's story. www.ksl.com/?nid=148&sid=9707117

anxious and blessed

This Friday we are going to take Baylee in for a series of 4 Rituxan treatments. This is becasue her 'b' cells are 3x higher than they should be, which is causing more brain damage and also gives her a 75% chance of a relapse. I guess what Rituxan does is kill b cells, but the risk (one of them) that I am the most concerned about is that there is a chance that her b cells won't come back, which would mean that she'll have to be on IVIG (the medicine we go down to utah monthly for) for the rest of her life. I want so badly for Baylee to be able to lead as normal of a life as possible. She's just such a sweet, amazing little girl, and as every parent I want her to be healthy and happy. She's made such great and surprising progress so far, but if she doens't get this drug she'll probably relapse, which will make for a longer recovery, and more learning disabilities, so the possible side effects might be worth it, although that's not very comforting to us at the moment. I've spoken to a couple of parents whose children have OMS and were treated with Rituxan and it worked out for them, so I'm just hoping that we can be that fortunate.
Tonight KSL is doing a story about Baylee in the 10 o clock news, which we are excited about because it will help us to get the word out about what OMS is and how it needs to be treated. We were VERY fortunate to have Baylee diagnosed in about 4 days, when the average is 3 months. We went to Illinois last week to see the only specialist in the world for OMS, Dr. Pranzitelli, and while we were there we met another family from Texas whos 3 year old son has OMS as well. It took them 6 MONTHS to recieve a diagnosis for their son, while in the mean time they had to watch him lose all of his motor skills and never gain the ability to speak. That was 2 years ago and he still isn't able to talk. He can run around and play now but he can't tell his parents what he wants, if anything is wrong, or anything like that. I just can't imagine not knowing what is wrong with your child for that long. Four days was complete torture. HD and I felt so helpless and were willing to do whatever it took to help Baylee, but had no idea what that was. I hope that there is someone out there who sees the story tonight or online or whatever, that can either help someone who is still trying to figure out what is wrong with their child, or who can help their child move towards recovery. I know that Heavenly Father has a plan, and I know that Baylee getting this disorder is part of it. I'm not sure exactly why, but I hope that we can help others through our experience with Baylee. She's such a strong and determined little girl and I know that she'll do whatever she puts her mind to, and I hope that her experience will give another child the same opportunity.