Thursday, December 31, 2009

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.

Wednesday, December 30, 2009

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







Baylee Tanksgiving







baylee

Saturday, November 14, 2009

just an update

Not much has been going on, but I haven't posted in a while so I thought it would be a good idea. I have FINALLY gotten control of the Baylee pooing all over her room situation by using duct tape. If I wrap it around her diaper until it overlaps she can't get it off. Such a relief! Now I just need to tackle potty-training but I'm not sure where to start with her. She wants to "go potty" on the toilet but she just pretends to go, "wipes," and then puts her diaper back on and goes potty in that. She has also occasionally gone in the bath tub when I wasn't looking. I've tried the candy thing but once I meniton candy to try to get her to go she just wants it, and won't concentrate on going potty anymore. I'm afraid to try just putting undearwear on her because she'll probably just poo in those, which would REALLY gross me out! I am not the biggest fan of poo and things of that nature.... so yeah I'm just a little nervous to go all out with the panties. A friend of mine just let her son run around naked for a couple of days so that he didn't have anything to go in, but I'm not sure if I could handle it if she decided to go on the carpet or something. Our carpet cleaner hasn't been working very well lately so I'm just not sure if I'm up for that either... I think I'm just going to have to suck it up and commit to something though if I want her to be potty trained any time soon.
Laycee is becoming a lot more mobile. I think that she is really motivated to walk because she wants to catch up to Baylee. She has been standing up on her own without falling over, and she has even taken a couple of steps, which I think is pretty good for an 8 month old. However, Baylee has been pushing her down occasionally, which is VERY frusturating because then Laycee cries, Baylee has to go in time out, etc. I think it's just an older sibling thing to pick on younger siblings, but it's driving me crazy. I feel like I spend most of my day saving Laycee from Baylee. But I have found that if I spend time playing with just Baylee every day she does it less, so it must be just a jealousy thing I guess.
Baylee has also been very into reading. She brings me her little pile of books like 10 times a day so that I'll sit down with her and read them. It's very cute. I don't always have the most time on my hands though, so I usually have to get all of my cleaning done when the girls are taking naps or after they go to bed.
I think Baylee is becoming afraid of the dark because she is constantly standing on toys or whatever she can find to turn her light back on after I put her to bed. She has also been climbing into the crib with Laycee trying to go to sleep in there. Poor little girl! It's so sad that she's so afraid. I did put a flashlight up on their curtain rod as kind of a makeshift night light, but it's not enough for Baylee. So usually I'll go into the girls room to check on them before I go to bed and the light will be on, and Baylee will either be in Laycee's crib, or asleep on her pile of books in her bed.
I have been working occasionally at Melaleuca lately, which is a wellness company. They produce products like vitamins, hair and skin stuff, natural makeup, non-caustic cleaning supplies, etc. It's actually pretty fun to get out of the house once in a while. It's only like 6 times a month so far. I go in for the last two and the first day of every month because that's their busiest time, and I also get called in to cover for people when they're sick or whatever. I basically just take orders from people calling in, answer product questions and things like that so it's really not a hard job by any means, but along with my paycheck I also get $80 a month to spend on products, which is really nice because I can just get all of my cleaning stuff for free now.
Anyways that's kind of my life as of now. I know it's really exciting :) There will probably be cooler things to post about once the holidays hit :)

Saturday, October 24, 2009

Baylee mommy

So today about 1/2 hour before bedtime I was about to lose it, the girls are still getting over being sick and they were just crying and demanding my attention all day long. So I was about to lose my temper, and decided that it would be a good idea to go into my room and bury my face in my pillow for a couple of minutes, and take some deep breaths to collect myself. A couple of seconds later Baylee came into my room saying, "Mommy, you okay?" And I said, "mommy tired baylee." Baylee then got a very concerned look on her face, climbed onto the bed next to me and started patting my head and my back, and then she said, "I sawwy mommy, I sawwy." It was so cute that I couldn't help but laugh. When she was satisfied that I was feeling better she continued playing. It's amazing that through all of the chasing babies around and picking up messes and poopy diapers and whatever else happens througout the day, that such a sweet little gesture can just brighten my day and cheer me right up. Its things like that, that make it all worth it.

Game Day!

So this morning HD and I were watching college game day and i saw baylee pushing a chair from the kitchen into our bedroom, and followed her to see what she was trying to get into, and she pushed it up to the closet, and was reaching for HD's football helmet. So I helped her get it down and put it on her, and she ran right into the livingroom to show HD, yelling "football touchdown daddy!" HD then thought that it would be fun to put his jersey on her too, and she ran into her bedroom and grabbed the football. She was all ready to go! It was very cute.









Thursday, September 24, 2009

summer

So here are some pictures taken in the last couple of months that I just hadn't posted yet. I'm sorry it took me so long. I would have had pics from Utah too but I realised when we got down there that the camera's batteries were dead... so yeah I'll work on it :) I'll probably be posting A LOT of pictures when it starts snowing simply because I'll have A LOT of free time! haha Laycee is starting to pull herself up to stand now. I think she's determined to be like Baylee. She gets SSSOOO frusturated when she can't stand up all the way or falls over. At least she doesn't give up right?






















































Monday, August 24, 2009

the right video

SO the last video I posted was the wrong one. This one is where Laycee is starting to crawl a little bit.

laycee starting to crawl

new pics from today!

Sorry it took me SSSOO long I couldn't find my camera :( I realised yesterday that I had put it in a box under my bed, which made me feel really intelligent... but now I can post pictures again! yay!














Wednesday, August 19, 2009

Football season

So with football season right around the corner I thought I would post about my favorite teams. Britany is about done with me going around the house singing "it's the most wonderful time of the year" anyways. First after living here in Idaho for so long it is hard not to like the Smurf Turf. They got a great team this year again. And I hate the BCS! Go Broncos unless they are playing my two other more favorite teams.



Now the ducks are just about one of the coolest teams ever! What other team can pull off having a Disney character as there mascot. Plus they are from the best of the 50 states. But on the other hand ESPN's Kirk Herbstreit said, "Ducks are the college football version of Paris Hilton...
They're famous for no reason, they look pretty, and they got a rich daddy" But I will still root for them to win the pack ten.
Last but not least the BCS bowl busters of this year BYU! My mom was nice enough to get us tickets this year for the games against Florida State, and Utah. I cant wait to see the game in the new Cowboys stadium. I think that any team is beatable if there is enough time to prepare for them. Just look at what Utah did to Alabama last year. I just hope that our O-line can hold up against those sooners for long enough to get ahead. Tonga should be back soon and I think that will take a lot of pressure off of Max Hall passing. Plus give the opposing D someone else to look at other than Harvey Unga. And it will also be nice to have all of our hardest games this year at home. Baylee has even been working on her fight song getting ready. even though it normally ends up ending in happy birthday to you. Oh well GO COUGARS!




Monday, August 17, 2009

Bucks for birdies!

Here are the new clubs that we got with the new Dad's golf stimulus plan. They are the Ram Cubik set. We got matching sets. Which is good cause that is the only matching set of anything that me and britany will buy. We have gone out and hit balls with them once so far. And they seemed like they will work great. We got a lot of help from Will to direct us to the right place. And from some random old guy who just retired from the Sr. pro golf tour. That's about all I can think of to say right now. So I am sorry if this post came off dry. Yay for golf!!!! ok did that help any?



Wednesday, August 5, 2009

haven't posted in a while..

We just got our new computer so I can post again! Thanks Matt and Mickie!!! I'm way excited. So lately has been fun. We just got back from Utah where we saw Suzanne's wedding. It was so cute! Zannie and Preston are adorable together. That was my first time in the Salt Lake Temple too, which was beautiful but a little confusing.. I didn't know that the entrance wasn't on the outside of the main building... so it took us a little while to figure out our way in. Then there was the lunch after the sealing which was very nice. Mickie and Kristin and Doug and whoever else helped did a great job putting it together. However I did spend the ENTIRE time (well I was switching jobs with HD) either chasing Baylee up and down the stairs, in and out of the bathroom, away from the pool, and out of the gym; or holding Laycee. Baylee is becoming a bit of a handful but we love her :) Laycee is much easier but I'm guessing that's just because she can't walk or even crawl yet. She does have the rolling thing and the laughing thing down pretty well though. Laycee is starting to sit up though but she has to prop herself up with her arms though.

So yesterday I tried out the work out video Mickie gave me, but Baylee had turned it on earlier in the day while I was watching tv and I didn't notice, so it started where it left off, and I'm guessing it was the beginning of the hard part that I wasn't supposed to do yet because there was an arm section that just KILLED my arms and shoulders! I couldn't even finish it all the way I had to skip to the next section! Man my arms are WEAK! I really need to work on them. I think pregnancy disintegrates muscles. I use to have some I swear!

Also I have recently found 3 spiders in my house. I feel so bad because HD had to wake up at like 5:30 to go to work this morning and I kept him awake last night freaking out about it. I couldn't fall asleep until probably 3 am because I was afraid that one was going to crawl on me or that I would swallow one in my sleep or something. I am SO afraid of spiders it's rediculous. I even check my shoes before I put them on and my towel before I dry myself off. I know, it's sad. But the towel thing is because once when I was like 14 I went to dry my face off and my nose touched a BIG NASTY LOOKING spider. Luckily it didn't bite me but I was scarred for life. Anyways I need to stop blogging and finish cleaning my house because I am setting off a few bug bombs today. I'm a little nervous about it but I don't want HD, Baylee, Laycee or I getting bitten.

Friday, July 3, 2009

YAY HD!!!

The other day HD came home from work with a big envelope in his hands and he didn't look grumpy so I thought to myself "It must be good news!" and got excited. He handed the envelope to me and I looked inside and there was a certificate stating that HD is know off of probation and is a certified correctional officer. The reason why this was a surprise for me was because they have a pretty firm rule that you can't be taken off of probation until you've been an officer for at least a year, and HD was more than 3 months away from that.

I guess what had happened was that he was called in earlier that day to the work camp (he had been out in the middle of nowhere with inmates doing work for Idaho Fish and Game) and when he got there there were a bunch of people in the conference room including the warden, the Director of the Idaho Department of Corrections and many others, and HD asked Lieutenant Nagel (who had asked for him) what he wanted and he said "We all want to see you Harvey, come on in." He walked into the conference room (covered in mud to his waist) and they said, "Congratulations Harvey, you've completed all of the requirements and are now off probation" (or something to that extent). HD then said, "Um, I haven't completed 1 year yet. I'm still about 3 months out." and then the Director said, "There are ways around that Harvey."

So apparently they really like HD over there and they don't want him to be laid off, because once he's off of probation he can't be laid off anymore. I was SO excited and proud of my husband. So now instead of being a correctional officer (C.O.) now HD is a C.O. II. With his promotion he also gets a 10% raise, which is surprising because the state had previously said that they were not allowed to give any raises to state employees because of the recession. So all of HD's hard work is paying off! Congratulations HD! I'm so proud.

Tuesday, June 2, 2009

Birthday Date

Yesterday HD took me out on a date for my birthday! Well it was two days early but some friends of ours voulenteered to babysit for us yesterday because that's when they had some free time and so HD thought that it would be a good opportunity for a birthday date. It was really nice going out with just HD. We usually go on "dates" with the girls.
First we went to Bajio's and had some mexican food. We both got some tacos but when we went to pay, their system wasn't working for some reason so they guy said, "Well I'm not sure if we charged you for that or not, but don't worry about it." Well I checked our account this morning and they hadn't charged us. Well I guess it's pretty cool getting free food but I feel bad about it. I hope that guy didn't get in trouble or anything with his boss.
Oh, all yesterday my hip was just completely out! All I could do is was hobble around extremely slowly and painfully, so I'm pretty sure that for the entire date I looked like I was handicapped. Great timing huh? Nothing like being a gimp on my birthday date! Oh well :)
Next we went to see that Disney movie UP. It was pretty good. I'm not gonna lie though, I cried more than once on yet another Disney movie... oh well. Luckily I don't think HD noticed. It was a pretty creative movie and made me laugh a lot, but I think it might have been a little better to take kids to than for a date. Well I don't know. I liked it but I don't think HD did. He seemed kind of bored, almost grumpy, but I found out after the movie that some kid had thrown a straw at the back of HD's head so that explains that. After that we drove around a bit, but couldn't think of anything else to do because of my stinkin hip, so we went home and hung out with our friends for a while before they went home. HD was pretty darn tired so right after they left we went to bed. There you go.
Overall I was just happy to be able to go on a real date with HD so I didn't care what we did, I just wish that my hip didn't hurt so bad. Oh well! I called the doctor today and he's going to try to figure out what's going on with it next week. Hopefully this won't be a problem that I have for the rest of my life because I already feel like I'm 90 and that's a LONG time to feel that old!

Saturday, May 30, 2009

The Camas High School Papermakers (no joke)


So my younger brother Nathan did this for his senior project. He painted a huge mural for our high school of our mascot, The Mean Machine (a paper making machine) and also of the old mascot from like the 1950s or something of Joe Papermaker. The originals of these two characters aren't nearly as cool. The mean machine is kind of boxy with a toilet paper looking cape, and Joe Papermaker is a little, scrawny character that looks like he should be in Popeye the Sailor Man. Needless to say I think this take on our pretty ridiculous mascots is a lot cooler. Go Papermakers! On the bottom of the mural it says "Meet Your Makers" which is also something Nathan made up. I though it was pretty cool.

Wednesday, May 27, 2009

Now who does this really happen to?



So I was sitting here tonight dinken around on the computer when I see these pictures pop up on facebook. I saw that one of my friends/co-worker had posted them and said that he was looking at this house burning. So britany gave him a call to see what was up. Now this is the cool part. He had just pulled 3 people out of the house. Now who really gets the opportunity to pull people from a burning building? What a stud. He said that it was two little girls 6 and 9 and an older man. The crappy thing is, he said there was an Idaho Falls city cop that just stood there the entire time and watched Tyler and his two friends pulling these people out. And when they asked him to help he took off after a drunk driver. I for one am glad that there are still good people out there who will put themselves in harms way to help others.

Tuesday, May 26, 2009

Not a nice puppy.




So last night I was going though doing all my checks at about 11:00 at night. I went outside to walk around the facility doing stuff like checking all the locks, and seeing if all the cars had been locked up for the night. I was at the north side of the camp and had just finished checking all the cars when I heard a dog bark. I turned around to see a 90lb pitbull running at me from the main road growling. No joke the dog was huge! For a moment I thought that I should try and get in the gates some how so I ran over to the closest one. But then realized it would take to long to unlock the gate and get the gate shut. So I did the next thing that came to my mind and sprinted over to the nearest truck that was about 30 yards away as the dog was circling a school bus. I jumped into the truck bed head first (Chevy 2500 fire truck) right as the dog got a hold of my foot. Luckily we were both moving too fast for the dog to hold on. So the dog slammed into the truck bed letting my shoe go, and I was able to stand up and call it into the control center. The dog at that time sat there and growled at me for a bit until it finally took off. Control then called the local cops to take care of the dog. I guess the local cop knew who the owner of the dog was, and went over to their house. When he got there, he later reported to us that he was standing on the front steps of the owners house when the Pitbull attacked him. The officer was able to pull out his taser gun and hit the dog with a good shock before any serious damage was done. At that point the dog got away. But later that morning they found the dog I am thinking because I heard the gun shot. I guess from what I was told the dog was used as a bear hunting dog. It would attack the bear so the hunter could shoot it. I am a bit smaller than a bear. And I guess I have never been HUNTED before. So I guess that is a new one for me.

Thursday, May 21, 2009

big girl.


Baylee fit into this just a few months ago. She is already in her 6-9 month stuff.

Monday, May 18, 2009

what we have been up to.

The new dog. Baylee loves dogs so a friend of ours gave her to us. All she does is sleep and i love it.
Baylee found a way to make a hammer out of blocks. I'm so proud.

The first project, a pillow case. I picked the camo, britany picked butterfly's. Then we compromised on butterfly camo.


Baylee ripped into it, and then Britany couldn't wait. Sorry mom. Maybe you need to teach her though. It isn't hard for me to do but I am not good at explaining.

We found out that Baylee hate bubble baths. She spends the hole time frantically trying to get them off.




what we have been up to.

Laycee got blessed!
Keepen it G.

This is most of Baylees day.






Typical Laycee.




Sunday, May 10, 2009

Nathan's Comic

I thought this was so funny. My younger brother drew it. My favorite part is the bananna machine gun! Um.. and i didn't plan this to go with my background it is just a coincidence... :)

Friday, May 8, 2009

funny story

So I found this on one of my friend's blogs and I thought it was funny, so I'm sharing :)


Subject: $50
I recently asked my friend's little girl what she wanted to be when she grows up. She said she wanted to be President some day. Both of her parents, liberal Democrats, were standing there, so I asked her, 'If you were President what would be the first thing you would do?'She replied, 'I'd give food and houses to all the homeless people.'Her parents beamed.'Wow...what a worthy goal.' I told her, 'But you don't have to waituntil you're President to do that. You can come over to my house and mow the lawn, pull weeds, and sweep my yard, and I'll pay you $50. Then I'll take you over to the grocery store where the homeless guy hangs out, and you can give him the $50 to use toward food and a new house.'She thought that over for a few seconds, then she looked me straight inthe eye and asked, 'Why doesn't the homeless guy come over and do the work, and you can just pay him the $50?'I said, 'Welcome to the Republican Party.'Her parents still aren't speaking to me.

Monday, April 20, 2009

Laycee's Blessing

Just so you all know we're blessing Laycee on Sunday May 3rd, so you're all invited if you can make it.

Saturday, April 18, 2009

Laycee close-ups

So now you can all see what she looks like now. I think her eyes are definitly blue and her hair is definitly red, which means that I am completely out-numbered with our family hair color. Oh well I think it's cute :)
I'm sorry it took me so long to post. I tried like 4 different times to upload the pictures onto the computer and for some reason just couldn't figure it out, so I had to wait for HD to help me and we finally got them uploaded today. The posts with pictures that are older all say "finally" in the title. I realized as I was doing that, that it was kind of a stupid title but I figured that way you guys could figure out how far down you have to scroll to get through all of my new posts. So anyways, here they are. Hopefully I can figure out the camera thing for next time a lot sooner :)



Goodbye Spences! :(

Baylee and I went to the park yesterday to say goodbye to Kelly, Tanner and Dallin before their drive down to Utah. It's going to be a bummer not having them around. They'll come back for like a day in 4 months or so and then they're moving to Pocatello. It's exciting for them though. We can see them when the're in Poky on our way down to Utah when we go, but I think Baylee will miss playing with Tanner.