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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.