Family

Baylee just came up to me and put her arms around my neck. She started playing with my hair and batting her eyelashes, and then she whispered in her cutest voice, "Mom, you're my family." It was so adorably cheesy. It got me thinking about our little family though and all of the things we've been through together, how we got started, and how blessed I am to have such cute little girls (and almost boy), and such a hard-working, supportive husband.

Our 5th year anniversary is next month. I can't believe how much things have changed since then! I never would've thought that I would be expecting my third child within 5 years of marriage. It's CRAZY how fast time has gone by. I am SO grateful for all of the blessings our little family has been given. I am excited to see what is to come in our future, and what other challenges and successes time will bring. I LOVE HD so much. He is my best friend. I can talk to him about anything, any concerns or worries, anything like that and he will do his best to help reassure me that everything will be ok. He has such a strong testimony and knowledge of the Gospel, and his strength helps me to be better, and to understand more about who I am, and why I'm here. It's also comforting that he's almost as quirky as I am. He is so understanding of me and my moodiness, etc. and he loves me anyway :)

Baylee and Laycee are both such smart little girls. They are already so strong and determined. I can see so much potential in them as they grow. Baylee is so resillient. I have no idea how she's made it through the last year and a half or so. Most of the time she endures things with a big smile on her face. I know that if I had to go through even a fraction of what she's been through I wouldn't be smiling nearly as often. She is such a tough and determined little girl and I have no doubt that her determination is a major part of why she has come so far in such a short amount of time.

More often than not Laycee is right there with us while we've been going through Baylee's treatments. She has been so patient with me. It's hard sometimes to give her as much attention because Baylee needs it so often, but she has remained so sweet and loving throughout everything. Laycee has such a mild temperment. Lately when I put her down for bed she doesn't even cry or complain. She just lays down, gives me a huge smile and a hug, and says "say prayer?" We say a little prayer together and she blows me a kiss as I leave.

My family brings me so much joy. I am so grateful to have been blessed with such a wonderful little family. I feel like I fall so short so often as a mother, but I am learning and will continue to be the best mom that I can for them. They deserve the best from me.

Sorry been a while :)

So I realise that it's been almost forever since I've posted anything on here and I apologise.
To be honest it was mainly because my page got all screwed up and I didn't know how to fix it. Anwyways we've been doing fine for like the last year or so :) Baylee is now off of her steroids! I no longer have to give her shots. SO nice! And Dr. Filloux said that she is doing so well that we'll probably only need to do her monthly IVIG infusions for another 6 months! There is an end in sight, which is so nice :) After that we'll just be going down for bi-annual MRIs. It's such a blessing that Baylee has been and still is doing so amazingly well. She's still pretty hyper, and she still has tantrums, but those things are manageable. She seems to be mellowing out a bit since she's been off of her steroids though. We enrolled her in preschool again at BYU I this semester and they haven't had very many problems with her. Last semester she would have a tantrum or something to that effect on a daily basis and sofar this semester it's only happened 1-2 times. We did just recently get a service coordinator to help us figure out what would be best for Baylee as far as behavioral/developmental therapy goes. She is working on scheduling a psychiatric evaluation for Baylee and we'll see how much help she needs. I was trying to figure that out on my own for a while, and ended up going pretty far over my cell phone minutes so it's nice to have someone to help me out. I don't know how much help she'll need, but we just want to make sure that she gets as much behavioral help as possible before going into kindergarden. Overall though it seems like Baylee should be able to lead a relatively normal life, which is such a blessing. We'll see how things go, but we're pretty optimistic at this point. We are very grateful for all of the prayers that have been said in Baylee's behalf. We know that her speedy progress has been a direct result of those prayers, so thank you all so much.

More Tahoe

some of the Tahoe/ Washington coast pics :) Lots more to come.

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.