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.

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.

LONG day

I am sooo tired right now! Today we had the home health nurse come at 10 am to help me give Baylee her shot. I'm actually doing better with that than I thought I would but if I had a choice, I would definitly have someone else do it, but that's okay. It needs to be done.
After that I went to Melaleuca to get my $80 of stuff for the month and I stocked up on almost every cleaning product they have, as well as hand sanitizer, chewable kid vitamins for Baylee, and some sore muscle relieving cream becaue I imagine that her poor little thighs get sore from all of the injections. I'm excited about all of the cleaning stuff, now I just need to find the time to use it! I guess I should be right now because Baylee just fell asleep.... but I am trying to become better at updating my blog.
At 12 Baylee's physical therapist came and told HD and I about different games we could play with Baylee that would help her to be able to gain muscle strength and stability, but Baylee was beside herself when he came and wouldn't let him show us... so hopefully that will go better next time.
Then a couple of my neighbors came to visit Baylee and she was SSSSOOO excited! She got to see her friends Chloe and Ezra, so she cheered right up after her unfortunate PT appointment.
At 4, the occupational therapist came and was helping me with Baylee's fine motor skills. He also said that he would try to get us a speech therapist, but appartenly there are huge waiting lists for that, and usually insurance doesn't cover home speech therapy visits, so hopefully he can help us to get somewhere with that because poor Baylee is really having a hard time talking now, and gets VERY frusturated with me because I can't understand what she wants. He also told us that we could probably get Baylee into a special pre-school when she turns 3 that would help her with her speech therapy and things of that nature, which would probably be a good idea. We were also told about this infant-toddler program that would make all of the home health visits free until Baylee turns 3, which isn't until September so that would be awesome.
After that I called social security to set an appointment (phone appointment) on Monday morning to discuss the possiblity of getting Baylee on disability. We should qualify, but I'm not sure how they will decide whether or not her condition qualifies because I'm almost positive that they don't know much about it. I'll do my best to explain, and hopefully I will be able to hunt down all of the medical information that they need. We'll see but that would definitly be helpful.
Then Kayla, Cameron, Ann and Corinne came to visit but that time I think Baylee was all visited out. She kept wanting to go into my room and lay down in my bed with me, so I felt kind of anti-social, but when I took her into the living room she threw HUGE tantrums. It was nice though because Kayla and Corinne cleaned my kitchen for me which was something that had been driving me crazy because I haven't had the time to do it today. So thanks Corinne and Kayla!

sorry...

It's REALLY difficult to find time to get on here and update because Baylee is needing my CONSTANT attention right now, but she fell asleep for a bit so I'll see how far I can get before she wakes up again. We have the ACTH now (at least some) because the National Organization of Rare Diseases sent it to us, along with an application for a grant that will cover the rest. What a HUGE blessing! Speaking with the nurse at Dr. Pransitelli's office in Illinios, (he's the only expert of OMS) the actual ACTH is the only type that puts kids into remisson, the synthetic type works to an extent but isn't as effective. So we have it now, but our home health nurse can't come twice a day so I have to give her a shot in the evenings, which is pretty hard for me because I really don't want to hurt Baylee in any way, but if it will help her to recover than I will do it.
Today I was trying to apply for disability for Baylee, and had to set her down for a minute because I couldn't hear anything on the phone, and she got SSSSOOOO mad at me that she army-crawled over to me! I was so excited! So hopefully she's going to be making some real progress sooner than we expected.
Tomorrow we have the nurse coming in the morning, and then around noon the physical therapist will be coming over to work with Baylee, and around 4 the occupational therapist is coming. So hopefully that will help her out. We're definitly praying that it does!

ACTH progress

Yesterday Kay recieved another (of many) e mails from the Senior VP of Blue Cross of Idaho stating that there is another form of ACTH called Cosyntropin, which is essentially the same thing but it's synthetic. They create it in labs, but it has the same molecular structure of ACTH, and is a lot less expensive. Apparently it is what they use in Japan, and according to the Neurologists there, it works very well. Our insurance will cover that for Baylee, so hopefully it will work. Right now our neurologist, Dr. Filloux, is trying to work out the kinks of dosage size, because apparently it is more dilluted than ACTH, but is an intermuscular injection that she'll need to have twice a day for the first week and then once a day after that, and because of the dillution she'll need one shot in each thigh twice a day, so he's trying to see if we can get it in a more concentrated form. We're going back up to Primary Childrens tomorrow to see what he came up with. We're hoping that Baylee won't have to have 4 shots a day, but honestly at this point if it will help her to recover, we'll do whatever is necessary. So hopefully we'll be coming back to Rexburg tomorrow, but we'll have to see how it goes.

Baylee at PCMC

ACTH

So I have been on the phone ALL day long with our insurance and with a couple of different pharmacutical companies trying to get ACTH going for Baylee. I even got our insurance to the point where they said that they would cover it fully and everything was taken care of, but that was when the pharmacy told them that they were a PPO provider and apparently that wasn't true, so now they're trying to find another pharmacy that can do it but the problem is that it is an uncommon drug so it might be hard to find, and now our insurance is also saying that thier management wants to research it more. So we'll see what happens, but it was really good news... and now we're not sure. The problem is that ACTH costs $30,000 a bottle and we'll need 4 bottles. Baylee needs it to recover though. It's probably the most important drug for her recovery, so we're praying HARD that we will be able to get it for her.

Baylee

I'm sorry that I haven't updated in a while. It has been a LONG two weeks, and I just wish I would have posted more before this all happened so that I would have more to remember how Baylee was before this all happened. I know that's kind of melo-dramatic, but I really should have been on top of that more.
Anyways, our lives have flipped completely upside-down a little over two weeks ago.
On Sunday the 14th we noticed some wierd flickering in Baylee's eyes, but we thought it was an issue that we should take her to an optometrist for. Tuesday morning, Baylee woke up shaking, and when she would try to walk she was kind of tipsy, almost as though she was drunk. When she started walking into walls and falling over HD and I really began to be concerned. Later that evening Baylee had resorted to crawling, so we called her doctor and brought her in. He really had no idea what was going on, so he sent us to the ER and the same thing. No one had ever seen this before. We had some luck though. In her MRI they thought that they saw Baylee's brain bleeding a little in her frontal lobe, so they life-flighted us down to Primary Children's Hospital in Salt Lake. When we arrived, they sent us to the PICU, where the attending Neurologist came in to see us just about an hour or so later. He told us that her symptoms didn't match up with a small amount of brain bleeding, and when they reviewed the MRI they didn't see any bleeding, so it wasn't an issue. Dr. Fulloux (the neurologist) said that he had seen this three times before, and it was something called OMS (Opsoclonus Myoclonus Syndrome), which roughly means shaking eyes and muscles.
At this point Baylee had lost the majority of her motor skills. She couldn't sit up, feed herself, hold her sippy cup, she really couldn't do much of anything and wanted us to hold her constantly, and that's how it's continued to be for the last two weeks.
After another CT scan they found a large tumor in her lower back attached to her tail bone, which is what they were looking for. It was a neuro blastoma, which can be a cause for OMS. Apparently what happens is the nervous system goes into overdrive i guess, trying to kill the tumor, but when the tumor is removed, it is still attacking Baylee's body, mainly her brain, which has been the cause of her loss of motor skills. This also causes violent temper tantrums, learning disabilities, and in some children a loss of the ability to speak. We have been lucky with Baylee in that she still has that ability. She doesn't talk as much as she use to and when she's frusturated she resorts to whining instead of telling me what she wants.
Considering what has happened though we have been extremely blessed. We have had SSSOOO much help from friends and family. HD's siblings have been watching Laycee for us (she couldn't be in the hospital). Some of our friends from Rexburg have been watching our dog, we have had an OUTPOURING of prayers in Baylee's behalf, etc. She probably had more presents this Christmas than she will have again. I am just so grateful for our wonderful family and friends. My mom was able to fly out thanks to my dad's boss, and my mother and father in law have been here the entire time, until yesterday when my father in law had to go back to Oregon for work. Anyways, I just wanted to say thank you to everyone who included Baylee in their prayers, as well as to all those who have sent cards and gifts, and especially to our family members who have gone out of their way and even changed holiday plans to be here for us. We love you all and thank you so much.
At this point it looks like we will be staying down here for treatments until Tuesday, and then we will be driving down here once a month for at least the next 8 months for Chemo treatments. Baylee is going to have home care, where she will recieve occupational and physical therapy, and we are currently trying to figure out a way to see the only specilist for this disease in Illinois. We will keep you all updated as much as we can. HD's sister Mickie has done a WONDERFUL and much appreciated job of placing Baylee updates in her blog, as well as researching as much about OMS as she could. She knows a lot more about it than we do at this point. Anyways, thank you to everyone. We love you all.

Baylee and Laycee Thanksgiving