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Watch out Jerry Lewis cuz the Taylors are now Telethoners!

We were asked to be part of the Primary Children's Miracle Network Telethon. We'll be part of the Idaho telethon and have 3 minutes of fame, telling Rylee's story and our experience at Primary Children's.

It will be this Sunday, May 31 on KIDK channel 3 in Idaho. (Yes, this is the station you don't get if you have Dish Network, but can get it with Antenna, cable or DirecTV). Our time slot is for 3:00 p.m, so tune in. Better yet, call in and give a pledge to support Primary Children's.

We really are lucky to have such a great hospital so close to us. The money raised goes to help families with their medical expenses, which adds up real fast. I think they said over 4,000 Idaho children were seen at Primary children's in 2008. It is the go-to hospital for Idaho, Utah, Wyoming and Montana. I remeber being shocked when I heard of a family from Canada that came to Primary's for their child's cancer treatments. Can you imagine?

It will for sure be me & Rylee for our spot. They have invited our entire family, but Justin is not that excited about going on TV, so we'll see if I end up talking him into it. Hopefully we won't make fools out of ourselves.
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In other news: I spent most of the day at the hospital yesterday with my mom. My dad is still sedated and he's definitely seen better days. He is pretty swollen and bruised and he's going to have a hard recovery, but we are just grateful that it's mostly stuff that can atleast recover. They let him come off of the pain med a little bit every 4 hours to check responsiveness and he's responding, but does shake his head when asked if he's in pain. Dang, I hate stuff like this.

Yep, Life is Fragile

I had another post that I was working on, but the only thing I've got on my mind right now is my dad.

Tonight my dad, Don, was in a critical motorcycle accident. He was going to change water (flood irrigating) and a neighbors dog jumped out and it made my dad wreck pretty bad. My dad was not (and never does) wearing a helmet.

He was taken by ambulance to the ER and has been in surgery for about 4 hours. These are the injuries we know of so far from the CAT scans and MRI's.
~Broken right hand/fractured knuckles- they are placing rods in the right hand.
~Broken shoulder blade-they can't do anything for this, has to heal on its own.
~Broken nose and open wounds on nose
~Punctures and gashes in his head and face- he got extensive road rash. A plastic surgeon was called in and has been working on him. Will most likely have scarring. They were cleaning out all the gravel and other stuff out of wounds.
~Fluid on his lungs
~Punctured one lung
~Broken ribs- he broke every single rib on his left side, some ribs had several fractures
~Caused his whole left rib cage to collapse on the left side

Once he is done with surgery, he will be moved to the Intensive Care Unit and will be sedated for probably 4-5 days. He has a breathing tube (ventilator) inserted and they have to have him still for a few days to get the fluid off the lungs. They say that things could possibly get worse before they get better. He will have quite a bit of pain and it will be a long healing process- at least all summer. For a farmer in his busiest season, that's not going to be good news to him.

It's still early, so in these next few days we'll find out more on progress/complications and such. The Dr. did say that for a motorcycle accident and for not wearing a helmet it is a miracle that this is all that we're dealing with. There has been no brain trauma found at all- we are so grateful for that miracle. Why do we underestimate the miracles we receive? HUGE Blessing!

I tell you what- this just hasn't been our year. It's amazing how quickly things can happen. Life is definitely fragile. I know I've got a pretty good prayer circle surrounding this blog, so include my dad please. He is the rock of our family, the hardest worker I've ever know and has a can-do attitude. Please pray for a good recovery. My dad is not the type that enjoys sitting around-especially when there's work to do.

So far, it sounds like things are going to be okay, but these next few days are going to be up in the air a bit. They say the biggest risk he's facing right now is getting pneumonia. All things considered, we're once again grateful for what it is and what it wasn't.

Pray for Don!

Looking Ahead...

It has been 7 months since Rylee was diagnosed with Leukemia. Today at treatment we got a date. The first week of December 2010. That is when Rylee's treatment will be complete! Yay!

I am just overcome with gratitude right now. In the beginning, I wondered how we were honestly going to do this. How we would get through it. And now, I see the light.

In so many ways, it's been the best of times and the worst of times. I have never witnessed so much goodness in my whole life. I was thinking about everyone who has helped us, prayed for us, encouraged or supported us. We have had endless meals provided, gifts sent, services offered and heartfelt kindness. I am just so grateful for the blessings that have been poured out upon us. They have totally outweighed our trial. Thank you-everyone for doing so much for us.

Too many people give me credit for the way we've gotten through this. While I am humbled by your kindness, the truth is, I have been given a strength beyond my own. I do not take credit for it. I often think of the poem Footprints and realize that I too have been carried during this difficult time. I am just eternally thankful that we have an end in sight. And it's not because I can't wait to get our life back. We'll never get it back, things will never be the same. This has changed us-for the better. We're just anxious for the opportunity to look ahead and move forward with life in a whole new perspective. Cherishing every day. Grateful to have Rylee here with us.

A few weeks ago, we received some really good news. It has been one of the many tender mercies we have received through this journey. On May 15, Rylee is scheduled for a surgery at Primary Children's that will replace her central line with a port. Initially we were told that it wouldn't ever really be a possibility because of Rylee's age. In the past they didn't like inserting them on anyone under the age of 4. Thank goodness for modern medicine! I am overjoyed at this news. I know that it probably means nothing to most of you, but for us, this relieves so much work, worry and limitations.

Right now, Rylee has a central line, which is essentially a cord that sits on the outside of her chest. While it's a convenient little thing for blood draws, chemo injections and the other ins and outs of her body, it is high maintenance. I have to "flush" it with saline and heparin once a day. It has to stay covered with a dressing at all times. This dressing has to be changed weekly or more if it gets wet or dirty. I have to cover it will Press N Seal wrap everyday for a bath. Rylee cannot submerge in water with it- can't swim, lay on her belly in the tub, can only have water about belly button high or lower. It has already gotten broken once. It is stressful to let her play with other kids unattended for fear that they might pull on it or pull it out. It's a straight connection to her heart, we're always at risk for it getting infected, the dressings have caused some nasty rashes, etc. etc. To say the least, it's a pain that we've just gotten used to. Anyway, the port goes under the skin, so there is absolutely NO daily or weekly maintenance with this. She can swim, play at ease, bath normally and we will no longer be in need of ANY medical supplies (we currently have a huge bag full). It's just a huge relief that eliminates a lot of burdens for me. I cannot wait to fill our jetted tub to the brim, add some bubbles and let Rylee soak it up. Such a simple pleasure that is much deserved. I also feel like buying her an adorable new swimming suit and then hit up every swimming hole we can get to this summer-just because she CAN.

It just seems like life is getting easier...little by little. For one thing, Jace is now able to just do speech therapy once a week instead of twice, (since he's made such good progress- yay Jace). All of our 6 week check ups are behind us. Tax season is over and we're into relaxed summer hours for Jus (makes for lots of quality family time). Jace's preschool & speech are both done at the end of the month and sunshine and summertime are right around the corner.

The other good news we got is that we don't have to have home health come anymore. We've been having a nurse come once a week. (She didn't really do much, but it was in our orders from Primary Children's to have one). Eliminating 4 appointments per month makes a huge difference. It was just starting to feel like Rylee never got a break. The maintenance phase is proving to be much more low-key. Going to the Dr. once a month feels much better than weekly or daily.

Basically the next year and a half will go like this. Chemo/office visit: once a month. Spinal taps: Once every three months. {At home meds}. Steroid (Dexamethisone): 2 times/day for 5 days/month. Oral Methotrexate: Once per week. Septra: twice a day every Mon/Tues. Mercaptopurine: Once a day. That's not so bad.

It is really starting to feel like we're living with cancer, instead of cancer controlling our lives. That feels good.

Jaden at 2 Months

Just trying to catch up on our family history a bit. I've decided that this is a great place to keep records of all the little things, since I'm not writing anything down anywhere else. On April 19, Jaden hit the 2 month mark. Here's a glimpse:

Jaden @ 2 months

Stats:

Weight: 11.7 lbs.

Height: 23.8 inches

Head: 15 inches

During his second month, he is still wide-eyed and alert. Many people comment on how well he holds his head up and how strong he is. This kid doesn't relax very often- it seems like he's always on guard. Always looking around, often stiff as a board.

He's done a lot of this:

...As well as a lot of spitting up. I chalk it up to his continued tummy troubles, which I feel like we are finally getting figured out. I don't think we'll see as much of this at his 3 month review.

(At least that's what I'm crossing my fingers for.)

He's also learned how to "coo" and smile this month (still trying to capture a picture of the smile).

Love it when he does both those. It's amazing to see a baby morph into a person little by little. Finding their voice, discovering their bodies, recognizing those around them. I always wonder what they are thinking of all that surrounds them.

He's been playing, interested in things around him. He likes to lay under this toy and hit the noise makers. He'll stretch out and kick his legs. He also likes to swing or sit in the bouncy seat. He prefers to be held and close to the action though. He doesn't like to be left out. He does o.k. in the car or car seat, but isn't one of those babies that will fall asleep as soon as you get driving. Or one of those babies that will stay asleep in his seat once you get to the store. He's also a little conditional when it comes to doing anything unless he's got all his burps and gas out (part of the temperamental tummy). Guess I can't blame him.

He got blessed at 2 months and also celebrated his first Easter. He had his 2 month Dr. check, which included shots! He screamed pretty loud. Outings have included: walks in his stroller around the neighborhood and to the Nature Park and the usual errands: grocery store, Walmart, speech, Dr appointments. We stay home most days. It's much easier.

He probably loves his mama best and loves to do this:

Must say that I love it when he does this. He is like a little vulture to me.

And of course, he continues to get loved on by these two. He can't eat, sleep or poop without an audience.

The three amigos. I swear nothing will EVER happen to Jaden with the way these two look after him. I think the sibling connection is so sweet. Kids truly need siblings. I once read that you have one child for yourself, but you have more than one child so they have each other. No one will ever love or understand these guys more than they will each other.

(Don't mind Rylee's comb over- we've cut that now.)

Jace's favorite sayings regarding Jaden:

"Hi Jaden" or "hi honey" (In a really high-pitched sing songy voice)- usually accompanied by Jace sucking on Jaden's fingers and then rubbing Jaden's soft hand across his eyes and face.

" You are so cute." (in the same voice). Then he'll always tell me that Jaden looks so cute or tell me that Jaden is being so good right now. "He's not crying or nothing. " Jace is always interested in holding Jaden or having alone time with him. We have let him walk around with Jaden a few times or carry him from one place to another. He's a responsible big brother.

Rylee's Favorite: "Uh, Baby" She's the first to come get me if baby is crying then she'll say, "Needs mom".

Rylee loves to mother him. She's always concerned about where the baby is at. She'll get him right on her lap, hold him around his neck and say, "It's okay." or "Shh". She obsessed with trying to get him to take his binkie or she'll try to hush him by sticking her fingers in his mouth. She also loves to try to poke his eyes. And...she does get jealous of him from time to time. She'll up her baby act if he's getting all the attention- she'll put on her pouty face and say that she wants mom or dad (whoever does or doesn't have the baby).

Jaden is a cute little bugger. We're getting our system down now. Finding the routine with three.

Easter

My, my- the month of April just slipped right by. We had a pretty good Easter, it was actually pretty laid back, which felt good. Here's a look at what we did.

On the Saturday before Easter, we hit up a few Easter egg hunts. The first one was at the high school, put on by the city, and it was seriously done in under five minutes. We know this because we were a few minutes late and well, it's true what they say, "You snooze, you loose." We decided we won't be wasting our time for this one in the future. Terrible candy + tons of people + done within seconds= not worth it.

So then we ventured over to Broulims. We saw the Easter Bunny, looked at the baby chicks and did the two aisle egg hunt for our second year in a row. Once again, not really worth it. We were one of the first in line, so I kept getting irritated by parents who let their kids cut to the front of the line or run past the line & down the aisle, leaving the Broulims workers to babysit. It was crowded, there were way too many kids for eggs and Jace & Rylee were both feeling a little bit too claustrophobic by all the eager kids. Crowds + kids not really caring about it + the 5 eggs we took home (with candy that my kids do not need any more of) = NOT WORTH IT.

I'm glad that there is a real meaning to Easter.

So after our egg hunt fiasco's, we enjoyed the afternoon outside flying kites.

Easter morning the kids awoke to a few gifts from E.B. and then it was off to church. After church we enjoyed a nice meal with my family. I'm so grateful for the resurrection of Jesus Christ. Through the resurrection, our spirit will be reunited with our body in a perfect, immortal state, no longer subject to disease or death. I can't explain how much joy and peace that brings to me for our sweet Rylee. To have her body free of disease and hurt and pain. I wish that we would have been able to go to Jerusalem and see the Garden Tomb from which Jesus rose. All of my family talks about the amazing spirit that was felt there. I truly hope we have another opportunity to go and feel of that spirit ourselves.

Jace & Rylee both got some rain boots for Easter. Trying them out in the rain.

Jaden got the Bumbo seat. I love it- so easy to move from place to place.
Hope you all had a happy Easter as well.

30 Years...Just a Stepping Stone

Before this month is over, I wanted to commemorate my 30th birthday. My birthday was April 5, so it's a little after-the-fact, but 30 only comes once you know.

So my sweet husband gave me just what I needed for my birthday. Some "Me" time. I was queen for the day. He suprised me with a day at Sage Day Spa. He had the appointments all set up and everything. I got a facial(picture taken just after- sorry for the no makeup scare!), a pedicure and an eye brow wax.

It felt so good! I could certainly handle pampering myself like that every month if I could(or week really). To top it all off, I decided to splurge a bit more and got myself a double scoop waffle cone from G's Dairy before coming back home to the chaos.

So, wow! I'm really 30. I remember when 30 seemed so old. I especially feel old when I realize I can now say stuff like I've had certain friends for 25 years, or when I realize that I've known Justin half my life, or when I remember that I've been out of high school for 12 years and out of college for 7! I realized the other day that Jace will be graduated from high school in the same amount of time that I myself have been out of high school-13 years next year. That's old. I've also been noticing some fine lines and my body is definitely not what it used to be. Age will do that to you.

It's really put me in a bit of a reflective mode lately. I've been thinking a lot about what's in 30 years? What have I done with 30 years? What will the next 30 bring, etc. Sometimes I feel like I've got more life in my years than years in my life, and other times I can't believe some of the things I haven't yet experienced. So, I decided to write a few things down and realized that you really set your life up in the first 30- most of my goals and accomplishments were about getting me to this point and the next 30 seems to have a little different focus for me. True what the song says, "Just a stepping stone to where you are, where you've been. I'd do it all again."

I've had so many fun memories in my life that it's hard to love one certain time the best, but it was fun to think back on everything collectively. So just for fun, here's my list of 30 things in 30 years.

Random stuff done within 30 years:
1. Was born into this world
2. Learned all my basic skills of life (walking, talking, reading, writing, etc.)
3. Completed all primary schooling (Elementary, Middle School, Jr. High, High School)
4. Have only broken one bone- my finger (actually my sister Hollie broke it for me when we were in a fight over me wearing her lawn mowing shoes to mow the lawn?!)
5. Was a cheerleader for 5 years and have done gymnastics since about 2nd or 3rd grade. (I think I could still do a back handspring, but tucks- only on the trampoline these days.)
6. Experienced first kiss (and maybe a few more:)
7. Have snow skiied, water skiied, ice skated, roller bladed, tried snow boarding, wake boarding, boogie boarding, snorkeling, I've gone paintballing, rock climbing, repelling, fencing, white water rafting, been on rollercoasters, skycoasters, and water slides, have gambled, stayed on a house boat, got flipped out of a speed boat, driven motorcycles, snow machines, jet skis and 4-wheelers. {I'll try just about anything once.}
8. Have had long hair, short hair, curly hair, straight hair, colored hair, bangs and no bangs
9. Been through braces, boyfriends and breakups (and all the drama that comes with)
10. Was in a pageant
11. Worked at 8 different jobs
12. Been blessed with several true friends
13. Wrote a missionary for 2 years
14. Went to two different colleges and earned both Associates and Bachelor's Degrees
15. Have danced a lot- country dancing, social dancing, ballroom dancing, hula dancing, hip hop, cheer, been to too many dances to count, I've crowd surfed and have even been in the middle of a mosh pit.
16. Have lived with 23 different roommates
17. Seen inventions such as the Internet, Microsoft Word, cell phones, digital cameras, DVD's, iPods, texting, etc. come forth. Plus.....does anyone else remember stuff like renting a VCR from the video store- (maybe my family was the only ones deprived of not owning one).
18. I've been to dance clubs, fight clubs, concerts, plays, musicals, Broadway shows, rodeos, monster truck rally's, demolition derbies, college and professional sporting events and too many games and parties to even count. Plus have hosted or thrown several parties, bridal and baby showers.
19. Have never tried any drugs or alcohol
20. Have been a model, more than once. (I know what you're thinking- yeah right! I have modeled at a couple of bridal shows, once in a hair show as a hair model and at my old job (ad agency) I had to model my butt for an ad campaign and stand in as a Dr. using a medical device for my client's company collateral. Bizarre I know. Watch out Tyra!
21. Have been on TV (Channel 8 news at Blackfoot fair in about the 6th grade),
22. Have recorded 2 songs (once again, at the Blackfoot fair- some friends and I sang, I Saw the Sign, also recorded a song with fellow cheerleaders on a CD for the radio station, KLCE 97.).
23. Been to 12 out of the 50 states, but have never been out of the country or even on a cruise
24. Married my best friend/found my eternal companion
25. Have had 4 surgeries (1 tonsils out, 3 c-sections)
26. Had a career (Public Relations Coordinator @ a marketing/ad agency), then retired to motherhood
27. Have lived in two different states, 6 different cities, 13 different dwellings
28. Gave life to 3 human beings
29. Have sang karaoke, sang the national anthem at a game (not a solo-with all of the cheerleaders in H.S.), had a leading role in a play (Anyone remember my role as Sherriff Buford from 9th grade drama?)
30. Have owned 3 different vehicles and one home

There you have it. I feel like I've been around long enough to have been there, done that in some regards and have also learned a lot of value life lessons. But...I still feel like I have a lot to learn and do. I won't make you suffer through my list of things I'd like to do in my next 30 years though.

Farewell to Hair

Well, the day has come. We knew it would eventually and it has. We're six months in with Rylee's chemo treatments and her hair is basically gone. Last week was the final week. So...Hair we Aren't! (probably not funny to anyone who isn't familiar with the salon Hair We Are in Rexburg.)

Photo taken: April 13 (Approx. 6.5 months into treatment)

Don't worry. Nobody is going to do anything drastic, like shave our heads. It's all good.

{Throughout this post, I'm going to take a trip down hair memory lane.}

Rylee Jane was born with a head-full of dark black hair

Her hair has probably been the subject matter of the majority of questions/comments we get regarding Rylee. People wondering if she had lost it, some surprised by how much she still had, others wondered whether she'd lose it at all. I remember in the first few days as we were learning about the new journey ahead, this was one aspect that both Justin and myself thought would be very difficult. We cried. None of this is easy, but for some reason, the hair thing makes it so obvious. It's like we might as well strap a big neon flashing sign on her that says, "Look! I've got cancer." It's either that or people wondering if we're some militant family raising up a GI Jane.

She had this great head of hair until she was about 6 months old. Then it started to thin as her head grew.

She was always a bow/headband/hat baby. I think she wears them well.

It has been thinning gradually all throughout, but this last week it was literally like hair today, gone tomorrow. I’ve been bracing myself for the day that it would fall out- a little anxious by the uncertainty of it. I wasn’t sure if it would be like a shock- she wakes up one morning and it’s gone suddenly, or if it would fall out in chunks or little by little. I even began to hope that maybe we wouldn’t end up losing it in the end, since she held on to it for so long. Well, the anticipation is over. Now I know. For her, it left kind of like an onion in reverse. Layer by layer from the bottom up. Rylee's also split or broke off, almost like being cinged as opposed to falling out in big chunks. She just has a few straggling pieces on the top layer, which we're debating whether or not to just shave it and finish the job.

Her first official pony tail was at 10 months old. A single front pony.

And two back pony's followed a few days after (once I figured out all I needed was a fine tooth comb and some tiny elastics).

It has actually been easier than I had anticipated. Rylee seems to be okay with it, so I’m okay with it. At first, the mother in me worried that she might miss sitting up on the counter to get her hair done up all cute. I think I miss it more than she does. I was afraid that she might be insecure over it, but she just goes about her business as usual. She seems pretty unphased by the whole thing.

By her first birthday, she was starting to have enough hair to try a few different styles. The front was getting longer.

I've definitely experienced some loss in what might have been. Sometimes I get a little sad when I see other little girls with so much hair. I imagine what I might have done with Rylee’s hair, what she would otherwise look like right now. There are so many cute cuts and ways to fix it. This will all have to come later for us. And I can accept that. I swear all things are relative. I never wanted my two year old to go bald, but all things considered, I'd rather have Rylee than Rylee's hair. I feel the same way about everything else we have endured and dealt with.

She had more hair last Easter than this one. (Top double pony's). We never thought that would happen.

I’m glad that it happened gradually over time. It’s gets you used to the idea. Time has a way of healing and preparing you. I’m also thankful that she had it for as long as she did. In the beginning, they said some kids lose it in the first couple of months and some hold onto it for six months. They said if she kept it for this long, it wouldn’t be gone for long, because it’s able to start growing back in the maintenance phase, which we are now in. I thought it would be gone by Christmas, so having it for as long as she did was a nice bonus for us.

By last summer, we were just getting to the fun stage. I could do low pigtails in the back.
A full back pony with ribbon. High pig tails, which basically became her signature look. I even got to try some fun clips and curls.
And of course the double loop throughs.

Or an easy single paired with a bow. So many options, so little time.

So…it is, what it is. Bald is beautiful! Hats and headbands, here we come! I’m very anxious to see what her second crop of hair will grow back like. They say that it often grows back in a different color or texture. Come what may....and we'll love it!

{And then she was diagnosed with Leukemia and little by little we lost our little crop of hair. Here's a look at the goodbye process.}

October- month of diagnosis. Still there as normal. By December we still had a good covering, although it had been breaking off over the past months. January: I could still do most the styles we had been doing. We still had good coverage, but still thinning. February: I thought that this would be our last back pony tail. The Dr. was certain the chemo she got this month would take her hair. It didn't. I was thrilled that she had more hair than her new baby brother by mid-Feb. We could even still style it in back pony loop throughs. A month later, on her last day of the last phase of treatment (March 19), was her last set of pony tails. It was now noticeably taking a toll. It would thin more and more each day. By the very end of March, I could still get a single pony up front, but had to include all the bangs. It was pretty slim pickins' to get enough to fit in the elastic. I did the best I could with what we had to work with. And her last official "ponytail" was at the first of April, just a few days before her second birthday. It was a back pony that looked more like the "shave the bottom, leave the top look" popular from the early 90's. Oh ya, we're bringin it back!

On April 7, we had thin, blow in the wind, bald on the bottom hair. The very first picture of this post was taken just 6 days later.

Goodbye hair.

So now we're here. Sporting looks such as:

The hat

The headband (minus most hair)

But probably not so much this look. Although she's brought it to me a few times and says "bow". Um...maybe if we go to Disneyland?!

Also not sure about the do-rag look. We'll see. Never say never.