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.