Something to Fight For

Throughout the beginning of Baylee's diagnosis and then treatment there were so many things to fight for such as how she should be treated, insurance companies refusing to pay for those treatments, doctors wanting to use treatments that weren't effective, etc. At this point Baylee is doing amazingly well. I was so worried in the beginning that it would be years before she could function properly if at all because doctors know so little about OMS and every child is different. I was preparing for the worst. Now she is right back where she should be and even advanced in some areas developmentally. It is simply a miracle. I have no doubt in my mind of the Lords hand in her speedy recovery. I've heard so many stories from other families battling OMS where they were unable to get a diagnosis let alone treatment for several months, and their children are still on the path of recovery and probably will be for a long time. I even spoke with one lady who was unable to get a diagnosis for her son, and now because of Baylee's news article they finally know what's wrong, 12 years later. Baylee had a diagnosis in a matter of days and then the treatments began within the week. There was just miracle after miracle and I am certain that it was a direct result of inspired men and women who heeded the spirits prompting and inspiration. Baylee now has a shot at leading a normal and fulfilling life for the most part. Something she might not have had, had things gone differently.
It's hard to explain the emotional roller coaster that our family has experienced throughout this process. It was easy to go from being horribly discouraged and depressed to completely grateful and in awe of the miracles unfolding around us in a very short time. To be so frustruated with the situation, but at the same time learning so much about personal strength, the strength of prayer and faith, the blessing of a wonerful family, and the complete comfort in knowing that your family is in the Lord's hands and that this trial is going to turn you into whoever He needs you to become.
Now that things are slowing down, and Baylee's treatmets are pretty much routine, it's hard to know what to do with myself. I still feel like I need to be fighting for something with the same perserverance and verocity as before. Baylee's road to full recovery is far from over, but the majority of our worst fears are now gone. I've been thinking a lot about this feeling of uneasiness as things have been becoming less emotionally trying, and wondering what it is that I should be doing now. I've come to the realization that this feeling I've been having is an opportunity to harness this new found strength and use it to do the Lord's will. To put myself to whatever task He has for me and to do the best that I can to serve. That is why we have trials. It's to make us stronger so that we can be more steadfast in our testimonies and more productive and perserverant as individuals. So that we can more effectively bring to pass the Lord's work as a church. By this I don't mean that I need to be striving for something monumentous, just that I now have a different perspective and understanding of life and my role in it. I can now be a better mother, wife and friend. I can strive harder to teach my children to gain testimonies of thier own, and to have their own personal strengh. I can think less about myself and more about the people around me who might need my help, even if that's something as simple as a visit from a friend. I have the blessing now of being able to empathise with people who are going through tough times, and to have a better understanding of how I can help them through those trials. And most importantly, I have a stronger testimony of our Lord and Savior Jesus Christ, and the everlasting power of the Atonement, and I can use that to help others to come to that same knowledge through my example. As of now I am far from accomplishing these things, but I think that I am closer now than I was before, and for that I am so grateful.

Update

Things have been going so well with Baylee lately. She's been reacting to the Rituxan treatments very well sofar, no allergic reactions or anything, and we were told that even if her immune system resets, that would almost be the ideal outcome because then there wouldn't be a chance of her relapsing. She would have to have IVIG treatments for a very long time, but if it came to that we would be able to give it to her in small doses at home in shot form. Either way though this should bring her from about a 75% chance of relapse to 25% which is awesome. If she doesn't relapse her long-term results will be a lot better. We have been so blessed throughout all of this. I don't think that this situation could have turned out any better than it has considering the circumstances. We are very fortunate.

Her occupational therapist came again today and said that she's actually advanced in coloring for being 2 1/2 which is AMAZING, considering the fact that in January she still couldn't hold a crayon. Her physical therapist came last week and said that baylee is right where she should be with everything except she can't jump. She never was able to jump though even before this happened so maybe she's just not a jumper? I don't know but if that's her only problem I'll take it! :) A speech therapist came once and told us that she didn't need it because she was where she should be in that respect too, which is also amazing. She's to a point now where, if you don't already know that something is wrong, you probably wouldn't be able to tell.

I also missed blogging about Laycee's birthday. I feel so bad! Things have just been crazy lately with trips to Utah and everything and I just haven't found time. But Laycee turned 1 on Feburary 26th. My babies are growing so fast! It seems like I just had Laycee, and I guess a year isn't that long but I bet that it's going to feel like a week went by and suddenly she's 2. Laycee is such a funny little girl. She LOVES to be held! She'll cling onto my leg until I pick her up :) She's ALWAYS smiling and everyone, except when she's being dramatic and then she'll cry. It seems like it's one or the other with her and it's just so funny. She has such a cute personality.

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.