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.

Baylee started trying to walk today. She is starting to improve faster and faster now.

Baylee progress

Hare ya go she is trying to talk and now is crawling.

Utah again

We left at 11:00 last night after HD got home from work for Utah, because the only time they could do Baylee's MRI was this morning at 6:30. It was a long and FOGGY drive! It was hard to see much of anything which was pretty unnerving, and then there were areas with fog and snow, which HD and I got pretty nervous about. We did make it down though with time to spare (3:30 AM) so we hung out in the parking garage at Primary Childrens for about an hour watching Monster's Inc. on our portable DVD player, and then decided to go inside and fall asleep in their pull-out chairs on the 3rd floor for an hour or so until it got closer to her appointment.
The MRI went well. We won't know the results until Monday and Tuesday when we go in for Baylee's IVIG treatment and to talk with her doctors about her progress, but she didn't wake up this time thanks to Grandma Kay, who researched anestesia treatments on omsusa.org for us, and discovered that kids with OMS actaully can't be put under very easily. We were wondering why she kept waking up during all of her scans... :) Good to know! Apparently she needed to have general anestesia for the MRI, which can't be done in Rexburg or Idaho Falls (I checked), becasue they don't have the equipment for it. That is why we had to drive down last night.
Dr. Pranzitelli (the specialist from Illinois) has researched this and found that the only drug that really works for OMS patients as an anastetic is propofol. So that's what they used this time and she didn't wake up, and after the MRI, she wasn't throwing HUGE temper tantrums! It was wonderful.
After our morning at the hospital we drove back down to Kristin and Will's. Laycee has been staying down here for the last week and 1/2 and we have been missing her DREADFULLY! When we walked in Laycee and Baylee were both so excited! They were giving each other so many hugs and kisses! It was adorable :) Then I set them both down on to play (Baylee can sit up by herself now!) and they were rolling balls back and forth to each other. I am SSSSOOO happy to have both my girls again! It was a good idea for Laycee to be here because it made it possible for me to get a TON of paperwork and phone calls done for Baylee, but it was definilty not easy!

Baylee's progress

The top video is from two days ago when Baylee tried to climb off of the couch and ended up standing up next to it which was AWESOME, but then today she started walking along the couch! We are so excited and grateful for Baylee's progress! It's amazing becaue she's only had 8 injections of ACTH now.