Cailee...Our Brave Little Soldier

As most of you know, Cailee had her first IV treatment this past Friday. Overall, she did really good. She was most definately a brave soldier to endure what she went through. We (Cailee, Madison, my Mom and I) got to the hospital around 8:30 a.m. and they got her weight and height. We went into the room she was going to be in and got things settled. She started out with smiles on her face (nervous smiles, but a smile none the less).

They took her vitals and started getting her hooked up to all the monitors. She had to have on three monitors for her heart, a monitor on her finger for her oxygen level and the blood pressure cuff on her leg. All which stayed on the whole time.

When she was all hooked up, Cailee wanted to find out what special things Grandma and Grandpa Lynn had done for her to play with while she was at the hospital, so she got to open it then! She loves the puppy purse she got. She named her Ellie and says she's our family dog.

Both girls are excited that Cailee got a new Ariel princess (polly pocket size) so that there are two mermaid fins to play with. Thanks Mom and Dad! Then came the hard part...getting the IV in. I held Cailee while the nurses put in the IV. My Mom stayed close by and was a great comfort to both of us. I never thought it would be so hard to hold down my little girl while she cried...all I wanted to do was tell hem to stop. I think my desire to not let her know I was crying too made it so I didn't say anything.

Once the IV was in and they drew what blood they needed, she was able to settle in a bit better. As you can see in the picture, she wasn't thrilled. Her hand had to be taped to a board so she couldn't move her hand and wrist. It made it hard for her to play too much since she couldn't use both hands. So most of the day was spent watching cartoons or movies.

For the most part, her body seemed to tolerate the medication fine, except when they tried to change the dose to 75 mg. She started coughing and couldn't seem to stop. She told me, "Mom, I think I can't breath." Thank goodness the nurse was in the room when it happened. Cailee's heart rate jumped up too high and she was as white as a sheet. I thought she was going to throw up, but thankfully she didn't.

The nurse immediately got out the meds she needed to take care of the reaction and got them in and within a few minutes, she was doing a lot better. We spent the rest of the day there with Cailee saying, "I just want to go home." I felt so bad for her. I wanted to take her home, but I know that this is for her benefit. Towards the end she wanted to hold Madie and it was so sweet.

Madie grabbed onto Cailee's fingers and they just looked at eachother for a little bit. I think she remembers her from heaven. Just very sweet. Once Cailee got her IV out, she got to eat dinner. She ordered Mac and Cheese and Broccoli. I'm not sure I know to many kids who would order broccoli over all the other things she could have ordered. She didn't end up eating it, but she didn't seem to eat a whole lot of anything.

When she was done we loaded up and headed for home at 5:45 p.m. I know we are in for a long three more Fridays from here on out, but I know that we are doing all we can to help her get better. I will admit there are times I wonder why she has to go through all of this. She's five...all she should have to worry about is who she's going to play with at recess.

We are very proud of you Cailee. We know this is not easy, but know we are always here for you. Now and forever! We love you sooo much. A special thanks to Aunt Donna and Angela for taking care of Abby and Brandon. I know they are in good hands and they had a great time. I really appreciate everything that everyone has done for us. We couldn't have gone through this without all the help!

I just thought this was a cute picture of Madie. My Mom was holding her while I was doing something with Cailee. I couldn't resist taking a picture of such a sweet face!

Precious Moments

Just more sweet pictures I thought I'd share!

Madie sleeping in Abby's arms. She is such a good baby. She sleeps through the kids noise and is great when they hold her!

Madie is so tiny that most of all her clothes are huge on her. This is about the only sleeper besides premie ones that fits the best. I think she looks like an angel.






Big breakthrough! Brandon finally held Madie for the first time on his own the other night. I had gone to bed to get a little bit of sleep and when I woke up my Mom and Blake showed me these pictures! He's starting to warm up to her more and more everyday.



Abby's all smiles when she gets to hold Madie. We found that if the kids have the Boppie around their waist that they can hold her by themselves a lot easier.

Blake was burping Madie the other night and Cailee got out one of her dolls and sat on the couch next to him. Here she is burping her baby doll. My Mom said at one point they were patting the babies backs at the same time. I just LOVE this picture.

And now...the rest of the story!

Here is the story of Madie's birth...we got to the hospital a little before 8:00 and got settled into our room. We had a great room. It was huge and the bathroom was very nice. It had a nice hot tub/spa that was very awesome. Once we were settled, my doctor came and got things going. I stayed on the monitors for a while and we watched to see how baby was doing. She was really wiggly so it was pretty funny to listen to the monitors. Once we saw that she was doing well, I was allowed to get up and walk around for a while. Blake and I took a number of different walks throughout the day. In the morning, my Aunt stopped by after work and stayed for a little bit, so we enjoyed visiting with her. My Mom came to the hospital once the kids Fairy godmother picked them up for the day (thanks again)! Later on in the day, my Mom ran and got a few card games, so we played a few games of UNO. I actually won one of the rounds.

At about 3:15 things weren't progressing as fast as I was hoping, so I decided to relax in the spa for a little bit. I got to stay in there for about a half hour(very nice) and then my nurse started the patosine to help things along. I had the best nurse, by the way. I was so lucky. I couldn't have asked for a better nurse. She was so caring and friendly. Anyways, once we got that going, I decided to go ahead and get an epidural. I enjoyed the morning so much I decided that I wanted to enjoy the rest. So once I got an epidural things went pretty quick. I got the epidural around 4 and went from a 4 to ready to push in an hour. My doctor ran to make it and once she got there, three pushes and little Madie was born! I couldn't have asked for a better labor and delivery. It was perfect and ended with a perfect, sweet little baby girl joining us!

This is the side view the morning of...

The back view...we didn't intentionally get the bathroom in the background.

Little Madie that night.

My doctor with Madie the next morning. I have the best doctor. Monday was her day off and she went ahead and started me so that I would have a little more time to recover before Cailee's stuff on Friday. How sweet is that.

Daddy getting Madie ready to go home!

Madie and I before going home. She's just a sweetie. I just can't get enough of her sweet little cheeks!

Madie and I (sleep deprived) before going home. I was very ready to go home so I could actually get some sleep.

Madison Lee Crossley!!

Madison is here!! She was born this afternoon at 5:15 weighing 6 lbs. 9 oz. and reaching 18 3/4 in. She is just beautiful and so petite! She is such a good baby so far and we just can't get enough of her. Cailee and Abby love her...Brandon we still aren't sure about. He didn't really want much to do with her, minus looking at her a few times. Anyways, I'm a bit tired, so will post the story later, but for now here is our little Madison!

Here is Grandma holding Madison. My Mom got to be there when she was born. I was so happy to have her there! She missed the last three, so this was so exciting!

Madison looking at Daddy. She's very alert and for the first few hours awake and wanting to eat!

Here she is getting weighed. What a cutie pie!

Proud Daddy with his baby girl!

Our little sister! We are so proud.

Just moments after she was born, they handed her to me and she grabbed onto my finger. It was the sweetest thing!

WELCOME TO OUR FAMILY, SWEET LITTLE MADIE!

Angels among us

There are times in our lives when I know there have to be angels among us. There are people here on the earth that in my book can hold the title of angel for the numerous acts of kindness they perform for others. These acts are done without expecting anything in return and most of the time the receiver doesn't even know it was them. The angels have listened to the Spirit our Father in Heaven has sent and act on the promptings they receive. They may not know why they are to be doing what they are doing on that specific day, but follow through anyways.

Our family has been blessed on more than one occasion with these special angels. My heart is so full of gratitude to my Father in Heaven for sending these angels to us. I can't even count the number of times that I have received phone calls on the days that I have been struggling because there has been no change in Cailee's kidney progress or just feel down, when someone shows up on our doorstep and brightens our day or the times when our doorbell has rung and when we open the door we don't find an angel but a package from our anonymous angels.

So to our angels...I know you are out there, you know who you are...I don't know if you will ever read this, but I hope someday that you will know of the gratitude and love my family has for you and what you have done for us. Some how you have known what to do to uplift our hope and spirits. Some days have been so overwhelming that I wonder where that next bit of hope is going to come from and there you are. Thank you from the bottom of my heart.

Those of you who are our family and friends, you are our known angels and I have so much love and appreciation for each of you. Thank you to eveyone who has helped us along our path of life. We may not chose every path our lives take, but I am glad to have my angels along the way.

I hope someday that I can be somebody's angel and pay it forward.

Soon to be four...and update on Cailee

We are soon going to be the parents of four!! We are going to have baby girl on Monday! I am so excited and nervous at the same time. I am hoping that it goes quick since I will be induced. We are going to go in first thing in the morning. They said we need to be there by 8:00 am but could go a little earlier if we wanted. My Mom is going to be coming Sunday and I am so glad she is! She'll help get kids ready and then the kids fairy godmother will be picking them up for the day so my Mom can be there at the hospital with Blake and I. (Thanks fairy godmother for everything!!) I can't wait to see our little angel and hold her in my arms! We don't have a name picked out yet...we are waiting to see her. I am just so excited! Hopefully I'll be able to sleep Sunday night.

My doctor is going to let me be induced on Monday because Cailee will start her IV treatments on Friday and I need to be there for her, I want to be there. I just can't think of not being there with her. Cailee, baby and I will go to the hospital and start the long process. They will start her on the IV, draw blood for some tests and give her a steroid in the IV and Benedryl and Tylenol by mouth so they can tell if she has an allergic reaction to the Rituximab (the cancer medication they are going to be using). Once she's had that in her system for 30 minutes she will be able to start the Rituximab. They start out at a very small dose to make sure her body will be able to handle the meds. Depending on how her body will take to it, they will up the dose by 25 mg every half hour up to a certain dose. We are hoping they are able to so she doesn't have to be there for 11 hours. If she can only take the lowest dose, it will take that long to get all of the medication. Once she's done, she'll have to have her vitals monitored for an additional hour to make sure she's doing okay. Then as long as everything is fine, we will be able to come back home until the next Friday.

We hope and pray that this will put her into remission. We found out today that this is our last option and that if this doesn't work, we will have to watch her kidney function over time and see how long they hold out. I know that Heavenly Father has a plan for her and I have to trust that she will be able to live a long and happy life. I don't think things have really sunk in yet for either Blake or I...I think I have some kind of mental block right now. I just hope I can keep strong for her as she goes through these next four weeks.

That's about it for the update for now. I will post pictures of new baby girl Crossley as soon as I can! Wish us all good luck!

Nephrotic Syndrome-when it all began and now...

Sorry this is a long blog...I'm doing more details for journaling purposes, so please excuse the length.

Some of you know and some don't that my oldest daughter Cailee has a kidney disease called Nephrotic Syndrome. For those who don't, the short definition-this disease is where her kidneys pull a lot of protein out of her blood and she pees it out. We found out just this last June when we took her in to have a urine analysis for a potential UTI. She didn't have an infection, but the doctor found a significant amount of protein in her urine, so we started doing the simple tests to see what might be going on. Well, all the initial tests came back that her body was releasing a large amount all throughout the day, so we started in with the more invasive tests. Since then, she has had a number of blood draws for a lot of tests. We have a specialist in Denver that we are working with, who is so kind to let us be close to home and working with Cailee's pediatrician for most of the treatments, tests, ect.

The first treatment she was on was a steroid that they were hoping would force the filtration system in her kidneys to function properly with the hopes of completely healing them and putting her into remission, but no such luck. We were pretty frustrated that it wasn't working...all we saw was the side effects of the steroid...major mood swings, emotional breakdowns, swelling in her face because of water retention, which this Nephrotic Syndrome does anyways and aggresive behavior. She is still currently on the steroid because it is taking FOREVER to wean her off of them, however, the side effects seem to be lessoned since the dose is a lot lower. She will take her last dose New Years Eve...we will truly celebrate. During the beginning of taking the steroid, we discovered that her blood pressure was really high. We thought it might be because of the steroid, but even as her dose is lessening, it's still a fight to get it lowered. She is taking a high blood pressure medication and that dose has been upped twice since she started taking it. Her blood pressure dropped a bit after the last dose change, but she still fluctuates from Dr. apt to apt.

So onto treatment number two...an organ rejection medication called Prograf. With this medication, it meant that she would have to get her blood drawn weekly until we found the proper dose for her. Thank goodness it only took two blood draws to find the proper dose. When we went to Denver to see the specialist there, she really seemed optomistic about this medication working and gave it a deadline of a month for the protein level in her urine to show signs of dropping (at the doctors office they rate it on a scale of 1+,2+ and 3+ with 3+being very high levels of protein-not good). Well all along Cailee has been at a 3+ and throughout the process of taking the Prograf, she remained at a 3+ indicating that it was not working. This was hard because this medication made her joints hurt and there were so many nights that she would wake up crying because her legs hurt so bad. She started to lose some of her hair also because of this. I have to say I was happy that she no longer has to take this. So onto more tests. She has been a trooper through all the times she's had to have her blood drawn. The first time she had it drawn, it took both Blake and I and two nurses to get her arm out and still. It just broke my heart to have to do it to her. Now when we go, she just asks, "Mom, am I getting my blood drawn today?" like it's no big deal...just another day.

So more tests...ultrasound on the kidneys only confirmed that yes, she has Nephrotic Syndrome and that her kidneys were swollen, due to the disease that we already knew she had. They drew a lot of blood (I felt so bad for her, but she did awesome...the staff who did were so good with her and kept telling her she was so big and brave.) They sent out some of the blood to another lab to perform a genetic/chromisone test to see if there was something there to give us an idea of why this is happening to her and why she's not responding to any of the medications. They also tested at that lab for a number of other things and through all those tests, we still know nothing. We are feeling a little bit discouraged, but are holding onto the faith of family, friends and our wonderful ward in church.

Treatment number three...IV medication. So now we are onto the next treatment that will be a lot more aggresive. It will be taking her to the hospital once a week for four weeks to the pediatric infusion center to have medication given through an IV. We don't know yet how long she will have to be there each time. We should find out Monday all the details. We now are faced with the decision of putting in a pick line (it stays in her arm and goes up the vein closer to her heart) or having the IV put in each time. The risks of the pick line are so scary...infection, possibly getting pulled out, ect. I think we are going to have an IV put in each time since it's for four weeks. It's getting harder and harder to do these things knowing that she is going to be hurting. Her little body has been through so much already, but I know if we don't keep trying that the consequences will be much worse.

If we can't get this in remission, eventually her kidneys will start shutting down and she will have to go on dialysis or possibly have a kidney transplant. It's been so hard to watch my little baby go through this. I am so grateful to my family for standing strong for us through all of this. We have seen so many blessings come during this time...the days that have been the hardest and most disappointing, we've received that phone call that was a pick me up. When we felt so defeated, our Bishop called and asked if we wouldn't mind if our ward devoted the fast to Cailee and even though she hasn't responded yet to anything, it gave us hope when we felt defeated. I can't imagine going through this time without our family and friends backing us up. I can't even count the number of phone calls to my Mom and sister that when I first called felt so afraid and angry that when we were done talking, I felt a sense of comfort. Cailee's little body's immune system is down due to this disease and all the medications that she's on, but one of the greatest blessings is that she hasn't gotten sick through all of this. If she gets sick, she won't be able to fight it off very well, so we know that we have a Father in Heaven watching out for her.

So for now, we are continuing on and praying that this medication works. Stay strong our little Miss Cailee.

Our little trick-or-treaters

This year two of our little goblins weren't with us, but because they have an awesome grandma (Thanks MOM!!), Abby and Brandon still got to go trunk or treating. My Mom said they had a lot of fun and from the looks of the pictures, I'd say they did. I think they scored in the candy area nicely...the loot is a lot, I must say. Can anyone say "Cavities"? This candy will last for a while. In the home front, we took Cailee trunk or treating with our tri-ward trunk or treat party. It was a ton of fun. I stayed at the car and passed out candy to all the other cute little goblins while Blake took her around. She seemed to have a good time!


This year Cailee was a witch-the cutest ever, I might add. Abby was Cinderella-very fitting for a little princess who probably would lose a shoe if she ran too fast! Brandon was our little cowboy this year. There's a little more behind the costume than just him being cute in cowboy clothes...he likes to dress up when the girls play dress up and Blake is always asking me when I'm going to get "boy" dress up stuff so he stops wearing girl clothes. So I thought I'd use Halloween to get some "boy" stuff for him and who doesn't like little cowboy boots (thanks sis) and hat (thanks G&G Crossley)!!

Our little witch at the trunk or treat! G&G Crossley bought her the hat...I think it matches quiet well with the tights! Cailee loved the spider on the top of the hat, although you can't see it in the picture.

Cailee ringing the doorbell at a friends house trick or treating (the only house we actually went to)!

Cinderella Abby and cowboy Brandon posing for the camera before going trick or treating. I don't think I've ever seen a prettier princess or more handsome cowboy!

Dress-check. Crown-check. Halloween bag-check. Cute smile-check. Dog named Skabus-what? Not sure about the dog.

YEE HAW-let's go get that candy!

WHAAHAAHAA

Blake thought it would be funny this year to scare the older kids who are a bit to old to be trick-or-treating, but go anyways. So he got on his grim reaper costume and scary mask and hid in some of the millions of leaves we have next to our buddy, Marcus The Carcus. I couldn't believe how you really couldn't tell he was in the costume! So when the first set of "older" kids came, I couldn't help but keep the door open to see their reaction. When they got a bit past him, he sat up out of the leaves and screamed scary sounds at them. They of course screamed back, while jumping. Once they discovered it was him, they laughed as they walked onto the next house. The best one was a Dad and his teenage daughter. The Dad actually laid down on the leaves next to Blake and "Marcus" just goofing around. When I answered the door, the girl was laughing and showed me where her Dad was. Blake could see he was studying him, but he didn't know he was real. So when they were walking away Blake moved his hand to make the leaves rustle, they looked back, he sat up and screamed and the Dad about jumped out of his M&M costume! We laughed so hard. Later on the Dad came back and said, "Hey Dude, your getting too much sleep out here...have a good night." His daughter said, "That was so not funny." We of course thought it was!

Here is Marcus the Carcus (left) and Blake (right). We covered up his legs so you couldn't see them. I thought it added to the effect!

Just to prove he really is in the costume, I made him sit up for a picture. Cailee made him take off the mask before he could come back in the house!

NOTE: No little children were scared in this process. The suspect in the mask remained perfectly still while the little ones came trick or treating!

"EYE" See You!

Cailee and I decided to do cupcakes for her Kindergarten party and when we were at the store, she saw these chocolate "EYEBALLS" and wanted to have them for the party. She said, "Mom, the kids will be like, wooo, there are eyeballs." She was so excited about them! She put all the eyeballs on the cupcakes...I think she did a good job.

The final product!

When we were all done with the cupcakes, we got a bit silly. Cailee decided to hold up the eyes over hers and we laughed forever about it! I could barely hold still long enough to get the picture I was laughing so hard! What a funny girl.



Here's Cailee eating some of the treats at her Kindergarten Halloween party. At her school, they aren't allowed to wear their costumes, big bummer:( Not sure why...I guess they have their reasons. I was surprised that I was the only Mom who stayed for the party. They rest sent their treats with the kids. I had fun!