Two Brooke White fans

Well Brooke White got voted off from American Idol, and both Chloe and Addie really liked her a lot, but we didn't know how much until tonight. They are both down stairs sobbing while Jake holds them in his arms. She was a great American Idol, very sweet, grateful and a good example. We told them that we will buy her album when she does one. But I don't think it was much comfort to them. They want to find her email and send her a note. It is a sad time for the girls in the England house.

getting my grove back

Now that I have been home for a week, it has been so great, but I must say it is really hard to settle back into the swing of things like house work. It didn't help that Chloe and Addie wanted to be in the same room so now the girls are all down stairs. We are in a mess moving stuff over, still trying to unpack from all we had at the apartment and loads of DI stuff. I try but who can ever stay on top of the dang laundry, maybe I should simplify in the clothing department. If anyone has tips send them my way because I need all the help I can get.
It is fun to see the great people that I am surrounded by after not seeing them for months.

Clinic

Today went really well, she has a little GVHD but a little bit is good to get her body immune to it. So they are going to watch it and we will get some creams to help, hopefully we won't have to use oral steriods. Cord blood donors usually get a little bit of GVHD or some sort of rashes. We got some good news, her bone marrow test came back at 100% of donor marrow!! There is no sign of her cells, which is good because we don't want any of her cells there to turn into cancer and corrupt the donor cells. So that is great news. She will still be on full dose of meds and not taper off yet because of GVHD but hopefully in a month or so she can start tappering off. Her liver levels are improving which is a good sign for the GVHD, because it isn't effecting her liver, it must just be on the skin. They said the sun effects the rash so we aren't going to be able to keep her from going outside, so she will just have to wear a hat sunscreen and long sleeves and pants for awhile. Well that is our update, we are excited her BMT is finally completed with 100% and she is doing well. It is a relief!

Its a beautiful day

We have been outside enjoying good friends and good weather! Chloe, although she hurt her foot and can barely walk has been riding her bike to get around. She doesn't complain about it hurting until we get inside. So I guess it takes her mind of it. She has her clinic appointment tommorow and it is our family conference. Her bone marrow aspirate results should be back and we will see her progress. I don't know exactly what they go over so we will update tommorow.
Well I guess I am not feeding Rhen enough, his doctor wants me to give him a bit more each feeding. He is 13 pds. Maybe this will help him sleep better. He is such a happy kid but his sleep habits are less than ideal.
I am excited to get out and do some yard work and get dirty.

blessing day

It is so fun to have times like these. The blessing of a new baby in the family. He looked so handsome in white. We are all home and it just feels good.

Blessing day for Rhen...finally

We are excited to be able to finally bless Rhen in the comfort of our home tommorow, but not excited that we can't share it with family and close friends. We really want to have people be there to support us and enjoy the awesomeness of our little Rhen man, but chloe can't go to church or be around groups of people. We hope you all understand, if I could make it different, believe me, I would!

home again, home again, jigity jig

Yes we are home together and it is so stinkin nice!! Even being home one day, I feel that ordeal the past few months was a dream, but unfortunatley it is not, so now other worries begin. Out playing, will she get sick, am I letting her stay out to long, is there any animal poop on the ground, will she fall off her bike and hurt herself? It is a constant worry but I am trying to let her be a little kid. There is not a time when I am not worrying, but I try not to let it show.
We can start taking turns going to church again. We weren't able to go so we are looking forward to switching off every other week. It is fun to be home!

It is almost may and it is snowing and hailing!!

Home

It is so nice to all be at home. Our wonderful neighbors had this huge banner made for Chlo and all of the neighbors and primary kids made cards and attached them to it. Thanks everyone! Too bad it was raining this afternoon, we could only keep it up a short time because it started to get ruined by the rain.

Since December, lying in her hospital bed before transplant Chloe has been dreaming about and asking me if she could have a new bike when she got all done with her treatments. She needed a bigger one anyway and I couldn't let her down.
So i snagged one at Al's the other night and she loves it. As soon as she got out of the car she ran inside so she could get some warmer clothes on and ride. Addie has been such a trooper through all of this, we got her a new bike too. They both rode them all afternoon and are making plans for riding tomorrow. It's Chloe's freedom from IV lines and being couped up I guess.

So Chloe really wanted this marinated steak that they sell at Macey's that is really tender, some of Stacie's home made rolls and some carmel brownies. Macey's was out, so I had the butcher make some up specially for her. Then Stacie went to all the work of making these really yummy carmel brownies and the rolls. Chloe had a couple of bites of each and she was done. Apparently the hard chemo is still in her system making things taste funny or something. She keeps asking for stuff that she really likes, then won't eat it.

Elsie wouldn't get in any of the pictures today, So i threw in a couple of Rhen. First one of Rhen and his Mommy. It was nice to walk into our house and see them sitting on our couch here with us, so I had to take a pic. That, and they are both so cute. This last one reminds me of a song by the Smith's. Yeah, I'm old enough to know who the Smith's are. Actually, I'd bet there are lots of people older than me that don't know who the Smith's are. It's a good pic cause I've always thought that charming men should have slop and drool dripping off their chins - it impresses the ladies.


It's so nice to walk around the house and check on all of my kids before I go to sleep.

going away gift.

Sunday we packed my car full of stuff so that today all Stacie had to do was pack up the portable crib and misc stuff and leave. Just to make life more interesting, someone was watching her load up the car and in between her trips they ransacked it. They stole all the food we had packed, some gas cards, receipts and whatever else we had in the center console or glovebox. All of the compartments were emptied and thrown all over the place in the car. Now we don't have to unpack the food and stuff! Thanks criminal guy.

I'd like to meet the kind of guy that hangs out at the Ronald McDonald House just waiting to steal from it's tennants. He must be a high caliber individual with a lot of compassion and integrity. Probably buddies with the guy that walked through the intensive care unit and stole cameras and purses from parents - parents that were likely in the OR waiting room while doctors were trying to save their child's life. Some people are awesome.

There is no place like home...

Ever since Chloe was a tiny baby she has loved to be home. When I went to several stores after a while she would get pretty fussy, but right when I came through the door of our house she calmed down and was content. She must get that from her dad, cause if anyone knows me I have never liked to stay in the same place for very long. But I am a changed person since these last 3 years. I have had no choice. It has been dificult but you get use to not going places much, especially after 3 years. So this will give everybody an idea of how excited she is to come home. Missing the smell, the sounds of your own creaks, the safe feeling of your own bed and of coarse the sisters who are in it.
Today at clinic she was bouncing around, dancing around, smiling and happy. She knows that tommorow will be the day to come home. The doctors were asking her if she will remember where her room is. She lauged and said, "Yes!" It has been almost a half a year since she has been home so it is no wonder why when you mention going home she beams, bounces up and down, and smiles the biggest smile you have ever seen.
I choose this picture because it reminds of me the relationship my girls have.
It shows how different my girls personality is. Addie wants to be obedient, chloe just is layed back and wants to give some lovin' and elsie well she just wants nothing to do with any of it! Looking back at pictures of when my kids were little is one of my favorite things

so now what?

I've had a few people ask me this now that Chloe is finally able to come home so I thought I'd explain.

As far as treatments go, she gets her last bone marrow sample drawn tomorrow to check it again. She has no more chemo, but will remain on multiple drugs to help her with marrow engraftment and to make sure her kidneys and other organs remain undamaged from what she has gone through. We will still have to take her to SLC weekly for a bit, then monthly probably for the rest of the year.

She can be outside, go places, ride her bike, play on the swingset or whatever, but we still have to be careful for the next 12 months or so. One of the biggest things is just that she is not around a lot people (especially kids) at once or in confined spaces with people - like (unfortunately)school, church and family or neighborhood gatherings. She may not be able to go to school next year either. She was pretty upset about that - she thought she'd be able to start going to school this week when she comes home.

I'm not an oncologist, but I've spoken with several lately so here is my explanation as to why. It takes up to a year after transplant before all of the blood cell levels get where they need to be. Her white blood counts that fight infections are coming back up, but there are other levels that remain low. She could still catch some viruses or bugs from other people - kids especially - that are no big deal to us but can be a big deal for her. So groups of people are less than ideal.

This is a little frustrating because she has been away from home for a long time. We'd like to have party for her or something fun, but we just can't. We need to play it safe. We will even have to limit what we do with our own family and probably should only have one family visiting at a time and only if everyone is healthy. So, if we turn down an invite, reschedule a visit or something - we hope you'll all understand.

We'll still have to watch what she eats or drinks and how it was prepared. No sharing food or drink. No well water unless it's been tested, bottled water when away from home on trips, camping, etc. No contact with streams, lakes, or rivers. No public pools, or any pool occupied by an infant or toddler. And of course, lots of hand washing by everyone. We have sanitizer bottles by every door in our house. Please use them if you swing by. Maybe all this sounds extreme, but we're kind of attached to Chloe so we're just going to have to deal with it for a little while.

Having said all that, she can and really looks forward to playing with her neighbor friends and cousins. We're glad she is coming home as the weather is getting warmer so she can play outside again and see some other faces besides ours. She looks forward to riding her bike again. Chloe called me tonight so I could tell her a story before bedtime. She had just marked off the last couple of days on her 100 day countdown calendar and was so happy. She hasn't been in that good of mood for a long time. She is so excited to get back to a more normal life. She deserves it; and so do her good sisters that have been so grown up and understanding for the past 3 years.

counting down

Today is going to go by very SLOWLY! We are just to excited! We were excited to get a visit from Jerry and Barb Frei yesterday. It was fun to see them and hear about all the warm weather they enjoy in St. George. Thanks so much for stopping by. We enjoyed your visit.
Well I have to clean out the apartment so that will take some time off my hands, I can't think about it to much or I just get to excited and that is all I think about. So the countdown is on. Day +98.

a day out

It was a beautiful day yesterday, a little windy, but we wanted to get out. We decided to go to the Capital, but they closed it for fire tests. The girls, especially chloe was really sad. So we went over to the Pioneer Museum. The girls had fun looking at all the dolls and clothes. It was really dusty in their and that is not good for Chloe so we had to go early, which made the girls sad, but we promised to come back. We have to think totally different than most people. Dust could get into her lungs and cause a fungal infection. It will be a weird day when I don't have to worry in the back of my mind all the things that could make her sick. She had to wear her mask out in the wind, we didn't stay out long because the dust in the air could get her sick. Although we didn't stay out long it was fun for them to run around for a minute. We ran into Julia and Brian Lyman, who were there for the 1/2 marathon. There was a bike race as well and it would have been fun to ride. I can't wait to get on the bike! When we were at the capital we were at the stop sign and saw a guy on his bike from the race. He couldn't get his foot out of his clip and tipped over. Totally biffing it onto his side. He was laughing about it, which made it easier to laugh too. That is one of my fears on my bike. When I started out riding I didn't get the clip in as easy as I thought, so I really felt bad for him because I pictured it being me, cause that is something that would happen to me.
Jake's cruiser is full to the top full of our stuff. We had a lot of stuff here. Infants always have a ton of stuff and I had to have stuff to occupy the girls. I still have a lot more so I hope I can get it all in my car. It feels nice to be getting the apartment empty.
Thanks to all those who helped clean our house for chloe's coming home. We so appreciate the help. With all the we have to go through, the energy just doesn't seem to be there to clean. So thank you, thank you, thank you!

The picture of Chloe is her concentrated face while playing her leapster game. She gets pretty serious about it.

We aren't in charge...

Last weekend was a tough one for me. The lady upstairs whose son got his transplant 5 days before chloe got to go home. I was bummed out because they were leaving before his 100 days were up. I got a little down until we talked to her outside one day and Jake asked her about going home. She said she basically told the doctors they were leaving. He had no signs of GVHD and they were ready to go. I got motivated to ask the doctors if we could go home. I wouldn't be as upfront about it as she was, I am just not that way. The day before her appointment I was sitting on the floor next to her and I knew she was thinking. I told her they get to go home (the people upstairs) because the mom just told the doctor they wanted to go. She looked at me and said, " I think we should wait until the doctors say we can go. I don't want to get sick." She of all people in our family to want to go home says this to me and it struck me, how grown up these past 3 years of undergoing chemo and transplant have made her. She always follows her feelings. The other day we went to a store, it wasn't very crowded, so I told her she didn't have to wear her mask. We were almost inside the store when she said, "I better get my mask, just in case."
There have been many times she has followed her promptings and what an example she is to me. She has not had a break from this place since we got here and wants to go home so badly but will stay because she wants to do what the doctors tell her. So we were both relieved when we asked and the answer was yes with a smile! I can't describe the feeling of coming home and being in my house, in my bed, with my kids, and with my best friend. We joke that we will have to get use to sleeping in the same bed again, cause we both have been using the whole bed while sleeping. But it is a getting used to that I can live with!
Jake and I have realized that we are not in charge of what happens in our life, but it is how we deal with it that matters. We never thought we would go through one of the most dreaded things in life. Cancer, isn't an easy word to hear, but you brave through it and hopefully come out better for doing so. There were times I was running on nothing, my tank was empty, yes I have been mad and wanted things to just go my way. I have been very sad at times but I have also been happy to have the opportunity to grow and have our family get stronger. Prayer has filled me up and given me strength.
Chloe has been a great example to us and hopefully will be done fighting this disease.
We will be home on wednesday! Hooray!

add this to my resume...

Chloe and Jake met Boozer at Primary childrens one day, talked and got super tight with Boozer as Jake puts it. He thought that chloe and jake were so cool he wanted a picture with them. :) The picture was put it in a Utah Health Magazine -thanks Kins for telling us about it! It doesn't mention Chloe or Jake in the article. It is mostly about Boozer and his son that had a BMT. It was fun to see a picture of them in a magazine. We are trying to get a copy of it for her portfolio.

http://www.citihealth.com/provider_article.php?city=ut&hc=0&art=951&pr=8790.

(since I am not as cool as my tecnical advanced husband, I can't figure out how to get a link so you will have to cut and paste to the address bar).

Tagged by the Cochrans

Well Megan, I have alot of time on my hands right now. These seven days are going to go by slooow, so I am happy to have something to do. This tag is to write 8 things about your kids and then tag 3 others to do the same. So here goes:

Adilade
1. we chose the name Adilade and then found out it was Jake's great great grandmother's name and a month after she was born found out that they were born on the same day.
2. She loves to blow her whistle, sorry neighbors
3. wants to be a teacher, but doesn't want to go to college
4. loves to read
5. when she was little she would take off her socks and shoes right when we got home and pick threw her toes for lint.
6. she loves to help, cause she feels grown up, she is a big help with Rhen.
7. she is good at writing stories
8. knew the whole alphabet at 18 months

Chloe
1. hates scary movies, and hates getting poked
2. has a tender heart, and hates when anyone else is sad
3. when she was younger she would run to you and almost tip you over to give you a hug and say I love you
4. Is the toughest seven year old I know, has a great attitude even in her life struggle
5. use to run side ways and run into walls and doors.
6. Saw a girl in lowes once when she was 4 the girl had bright pink hair and said to her after starring a long time "Your hair is so pretty."
7. Had eye surgery at 3 1/2 years old, and took it like a champ even when she had to wear patches.
8. has the sweetest voice you will ever hear. When she says her prayers it would melt your heart, just like her smile does.

Elsie
1. love to color, especially on herself!
2. loves to talk to people
3. has some seroius energy and says the word learry for really
4. doesn't know her abc's yet and when I try to teach her she just says, "I am done now mom." (we only get to the letter D)
5. so stinkin funny, she makes us laugh everyday, so has no guilt. one night she couldn't have any peanut butter cups because she didn't eat her dinner. We put her to bed and went down to watch TV when we came up to check on her she had the whole bag in her room. I said what are you doing? She said, "when you were down stairs and snuck over and got the bag and ate them all, they were gooood.
6. loves to play with cars and everycar she plays with she breaks a wheel on it. I have no idea how she does it.
7. LOVES to give Rhen long kisses.
8. loves to play dress up and put makeup on. One time at 8 in the morning I couldn't find her, finally when I did find her she was outside getting into her play car with only my high heels, underwear and a purse. She loves to be outside.

Rhen
1. Cutest boy we have ever had!
2. Smiles all the time and loves to laugh
3. likes to drive with his dad in the landcruiser
4. loves his mom. He follows me around the room where ever I am he is looking at me.
5. has learry sweaty feet! and they kindof smell.
6. is barely starting to like showers, at first he cried through the whole thing but now he enjoys it.
7. is most likely going to have blue eyes!
8. has a crooked toe

I tag Lena Leak, Kristen Longhurst and Joanna Chase

Homeward Bound!!

At todays' appointment we got the ok to come home next week! Sweet peaches, I am excited!! Most likely wednesday. I was really nervous to ask, thinking they would say no but she said yes, which brought tears to my eyes. Chloe is pretty excited to come home and play with friends, but was dissapointed she can't finish the 1st grade. I guess she forgot that I told her she can't go back most likely until the 3rd grade. So she had a sad cry for a minute but she bounced back pretty fast as usual.
She had her 100 day testing done, hearing test, lung test, and blood test. Her hearing is just fine and she did really well on the blowing air through the tube for her lung test. She thought that one was hard. I wished I had my camera for that one she looked so cute.
We are super excited to be back home together and thank everyone who has helped our family, this has been so hard on us and hopefully this is beat for good!

Over the weekend we wanted to get out of the apt. so we went up to This is the place monument. For the past few weeks when my other half have come to visit, we have taken a drive up the canyon the poineers took to get here. After we told this to our kids Elsie has been looking out the window to find pioneer foot tracks in the snow. And chloe is wanting to hear all the stories about pioneers. So this weekend since it was nice we went up there to read about them. They were disappointed though, the buildings weren't open yet. Not until May 2nd. So we will have to go back then, we got some goods pictures.

Chloe tagged Addie

A. Attached or Single? Single

B. Best Friends? Yes.

C. Cake or Pie? Pie. cherry is my favorite

D. Day of Choice? birthday, and christmas

E. Essential item? my whistle, so I can play school

F. Favorite color? sky blue

G. Greatest accomplishment? stop sucking my thumb

H. Hometown? Providence, UT

I. Indulgences? carmel icecream

J. January or July? July. my birthday

K. Kids? 0

L. Life is incomplete without? Family & Friends.

M. Marriage date? dunno

N. Number of Siblings? 3 + me

O. Oranges or Apples? Apples, they last longer

P. Phobias or fears? scared of doing my front handspring, I try but I keep doing a cartwheel

Q. Quotes? I see your drinking 1% milk, is that cause you think you are fat? Cause you're not you could be drinking whole if you want to. Napoleon Dynamite

R. Reason to smile? good jokes

S. Season? summer, birthday lots of birthdays!

T. Tag three friends? Aubrey, Alyssa Ball, Spencer

U. Unknown Fact About Me? I like to pick the lint between my toes

V. Very Favorite Store? Macy's cause you can buy bubble gum

W. Worst Habit? biting my nails

X. X-ray or Ultrasound? I haven't had either

Y. Your Favorite Food? pasta any kind

Z. Zodiac? don't know

Tag chloe's it

A. Attached or Single? Single

B. Best Friends? Yes.

C. Cake or Pie? Pie! pumpkin...and cherry

D. Day of Choice? christmas! lots of presents

E. Essential item? clothes

F. Favorite color? I like all the colors!

G. Greatest accomplishment? going through 2 rounds of chemo and 1 BMT

H. Hometown? Providence, UT

I. Indulgences? daddies brownies!

J. January or July? July. cause it is summer

K. Kids? what kids? no

L. Life is incomplete without? parents

M. Marriage date? I dunno

N. Number of Siblings? me 2 sisters and 1 cute brother

O. Oranges or Apples? Oranges, I am eating one right now!

P. Phobias or fears? mom: what is your fear chloe, getting poked? chloe: yep

Q. Quotes? I smell cookies. from nacho libre

R. Reason to smile? my daddy

S. Season? winter, because you get to play in the snow and ski, summer because you get to swim

T. Tag three friends? Jessica Clawson, Savanaha Cochran, Addie

U. Unknown Fact About Me? If I want to I can take three of my small pills all at the same time

V. Very Favorite Store? toys stores

W. Worst Habit? sucking my thumb

X. X-ray or Ultrasound? I have had both but I choose xray.

Y. Your Favorite Food? mac n cheese

Z. Zodiac? I don't know, what is that?

three girls and one boy

Chloe's hair is coming in so nicely! Soon I will have to start doing her hair again! She can't wait. To be honest having three girls hair to do say on sunday morning is very time consuming and to have one less to do made it faster, but we say bring on the hair! It is dark and beautiful.

She has a serious case of eczema on her face and head. We have cream for it but I have always felt bad for her. Even when she was Rhens age she had terrible skin, thanks to her dad's gene's .

Elsie did her own hair today. It looks beautiful. She took one of the hats that Kristen L. gave us and took the flower and put it in her hair. She is such a dress up girl! The other day when Julia picked her up from school she wanted some lip stick so Julia got some from the bottom of her purse and Elsie looked at it and said, "I don't wear dirty lipstick." It was at the bottom of the purse so it just had some stuff on the outside of the tube.

I started Rhen on some oatmeal and prunes...yum! He loves it and is sleeping longer naps, yay! After I feed him the oatmeal mix he will sleep for 2 to 3 hours instead of a half hour. He isn't quite 4 months but it is soon and he loves it so I am all for it! He is getting so big and is really the happiest kids. Smiles all the time, he is my first drooler, and we just want to squeeze him all day long!

I got Addie and Elsie's hair cut before we came down to SL. Addie's is really cute it is still the same length it just has layers. She is looking so old. She is a major fan of American Idol and she know all the names at a moments notice. I don't want her to grow up to soon but it is enivitable. Me and Jake watched the movie Dan in real life, and wondered is that going to be us in a few years. Having three teenage girls, man, it will be fun!

Your wish is granted

this is where chloe put her wish in and the wish wizard got it and granted her pop up trailer wish

so this is her star that is up in the Make A Wish ceiling. Her's is the one that doesn't have a gem in the center and is multi-colored pruple. One of the points of the star is white and purple stripped.

The wish place

Yesterday I wanted to let Chloe go to the Make A Wish center down in Murray. She made her wish almost 2 years ago and they let the kids who wish come back and visit the star they made out of glass. She has a special key to get into the wish room. It is a magical room that she put her wish into for the wish wizard. There is a water fall and a glass floor and the room changes colors and very soothing. The girls played there for awhile and Chloe was remembered by the people there because she is on the Make a Wish calendar. They also sent another envelope out with her picture on it to help raise money for wishes.
She has such a fun time there. I asked her if she had fun going to the play where she got her wish, she had a big smile and jumped up and said "YES!"
Make A Wish is an awesome organization, we support them and if any of you want to help kids like Chloe get their wish it is a great place to give a donation.
http://www.wish.org/. This is their website, you can read about kids and what they wished for. It is so neat to read all about the brave kids who get their wishes granted.

the truth comes out

today i ate some lunch that apparently was less than ideal for my stomach. Sorry Kell, but it was from Chipotle. Tonight I wasn't feeling so sweet so I told Chloe i needed to lay down for a sec because I was feeling a bit qweasy. She says, "Just think in your head that you won't throw up. That's what I do all the time and it helps me feel better." I laughed a little, but felt bad for her at the same time. She was right though, it worked.

Then she comes in and says, "Dad, maybe you should take some Bendryl or Atavan. Actually you need Ben-Fen (Benadryl and Fenagren sp?) that works best. Those are all meds they give her in the hospital. She would make a good nurse. She is starting to ask more and more about when she'll be able to go home. She really looks forward to being able to see some friends and neighbors.

because she asked me to.

Chloe took this picture while i was flushing her line and said, "put this on our blog and say, 'this is how we flush my line'". So here it is. Some Saline, tapped not shaken. Chased down with some Heparin, the yellow seringe variety. Must be with a twist of lemon?

So I was downloading the pics and saw all of these that we had taken or Chloe had. So I figured why not document a day in the life of Chlo.

Meds in the morning. A couple of prograf, 3 antibotics, 1 Sirolimus, and a flask of actegol to wash it down. Half of what it used ot be so thats nice.

Then we argue about her eating something that she really loves, but just doesn;t want to eat. Even though she asked for it. She often ends up with a dose of benadryl because her somach hurts her still.


Watch something. Scooby Doo, or Ice Age are her favs. Sometimes she just hangs out next to me while I do some work if she's not feeling so hot. She's a cuddler so she is usually right by my side whatever i am doing, which is fine with me.

Play some games on the computer for a bit. PBSkids, A spelling game, or whatever. She's been learning some big words lately.


Play and be silly while putting away laundry.


Take pictures of her surroundings. She likes to take pictures.


Take other pictures of random things.


Cook some lunch that we will argue about eating. She actually ate well today.

Play with Rhen if he is around. My fuzzy headed buddies. He's at home with Stacie this week, but it was a cute pic so I had to include it.


Hook up her IV backpack and wander around the apartment looking at stuff. Read a book, do a school workbook or make a craft. If it's nice outside we'd go out on the patio for a bit, but its been raining all week down her.


Color for a bit.


Read ours and our family or neighbors blogs. She likes to keep current with the goings on.

Take a random picture of herself.


take more random pictures of her surroundings. yep that's nacho with his pants on fire. I smell cookies.


Ask dad to do something she can take a picture of. Thats all I've got.


Argue about eating more than two bites of dinner.

Hang out with dad doing whatever we feel like. We have lots of options so I just couldn't nail down a single picture to put here. We usually read a book, or just talk about stuff; you know, politics or the health care system. Maybe fold some laundry or play xbox. She just learned how to do a backflip on the motocross game so she's pretty stoked.


Take nightly meds. About the same as the morning, washed down with actegol again.

Then it's off to for teeth brushing, prayers and all that jazz. Then we read the BFG, Charlie and the Chocolate Factory or Alice in Wonderland. Those are her faves these day. Sometimes there are more exciting things like dressing changes or clinic appointments but I didn't have the photos. We had a visit from home health care but i forgot to document that one on film.

I've been missing Addie and Elsie because i'm usually with them, but I love hanging out with Chlo-pants, even if it has to be here. She's a character. As an update on Stacie's post - she hasn;t had a fever and her broviak site doesn't hurt when touched which they usually do if infected so we're praying it's going to get cleared up with the dressing treatment.

Speaking of Heparin - not a good headline to see on MSN when your daughter has taken it:

Clinic today

It sounds like it was a pretty frustrating day at the clinic. Her stinkin dressings don't stay on and I have complained and complained about them falling off but they don't send new ones. So by the end of the appointment greenish puss was coming out of her central line and it was red. So there is an infection in her line. They took some of the puss to culture it. It was pretty much a nightmare getting her dressing changed at the hospital for Jake, chloe likes me to change them and apparently she didn't mind letting all the nurses know that by screaming at the top of her lungs continuously when it was changed. I know how that feels and it is very stressful. (sorry jake) He was pretty frustrated. She hasn't gotten a fever so they just put a disc on her central line that injects antibiotics into the skin to help it heal. I pray that it won't get worse.

It all seems like a dream...

I come home and look into chloe's room and remember 6 months ago chloe being so sick, and since I haven't been home for a while it seems like a dream, and in that sense it is weird being home. I kept thinking it doesn't even feel like I was ever pregnant, waiting so unpatiently to have Rhen. Christmas seems like the best dream ever, my family all together drinking egg nog opening presents. It is really a strange feeling. I wonder if Chloe will feel the same way.

Chloe's last spinal tap is tommorow. She said she was a little sad that is was her last because she likes being put to sleep and have a nap. She doesn't sleep that well at the apt. She prays every night to sleep good, not have bad dreams and not be scared. It is a sweet prayer. She is always looking on the bright side!

First day of the week.

We were pleased this weekend to be together to listen to conference. Over the past few years half of us are usually in the hospital on conference weekend, so this is a welcomed change. Stacie got the girls some conference activity packets which helped them follow along a little better than they usually do. I probably should get an activity packet for myself next time.

We rented Alvin and the Chipmunks for the girls the other night. They loved it and Stacie and I almost fell asleep. We were cuddling on the couch (yeah, we still do that sometimes after 11 yrs) and Chloe came over, moved our arms out of the way and claimed her spot on my lap. She's getting pretty big so it was funny because she had to lay right on top of me. She just moved Stacie out of the way and shoved her fuzzy little head under my chin to push it up out of the way so she could lay on my chest. Of course I didn't mind at all, but we laughed about how she made us less comfortable so she could relax. Any time you can hold and hug your kids is a good time though.

Addie and Elsie are looking more like each other every day. They both grow so fast that it seems like we are always having to replace their clothes because their pants turn into floods. Addie has been a great help to me at home and it's neat to see her helping Elsie understand some things and helping her get ready for school. She is growing up and loves to take care of Rhen when we're here. Elsie has been running around the apt playing with a little doll (she named it Chloe) singing and pretending they are friends. She does it in a very loud fashion which i guess is pretty much normal. She was screaming a song with so much emotion at 7:00 this morning, making her doll dance. I hope the neighbors up and down appreciate her waking them up, we all did.

Chloe's bandages keep coming off her broviak too soon. It's weird because they used to be so hard to remove. Now they come off too soon so they have to be changed after a couple of days instead of once a week. If the site underneath the bandage is exposed it can get infected so we worry about it. Supposedly she should be getting that removed soon so hopefully we can remain infection free until that day. Infections are less than desireable.

Rhen is still the coolest boy we've ever had. He held his bottle by himself this morning, then he decided it's easier if mom holds it for him. So now he won't eat well unless Stacie feeds him.

So happy together...

We were planning to go to the zoo yesterday. She has been wanting to go and I get tired of telling her you can't do that or eat that, but after thinking about it we decided to not go. She isn't suppose to be around animals and although she wouldn't touch the animals we decided to play it safe. Oh well, someday. Our kids want us to switch with each other so this week I will be home until thursday or so. I am excited to come home to take a break, although I wished that I had booked a massage!! I am going to have a whole day spa experience when I get home! Are there any good spa's in Logan that do that? Boy I miss Cancun (huh Jenn J.). Chloe really wants to go to Cancun but that will have to be in few years, but oh she will love it.
It is just a good day hanging out with my family and enjoy being together.

chloe's a character.

Chlo and I had a chat on the webcam this afternoon. She moved the laptop around so i could see Dylan and Kelly who were visiting and then she showed me Stacie and Rhen.

Then she says, "And look over here dad," pointing the camera to her IV pump, "here is my bag of fluids!" She thought she was pretty clever and followed it up with that chuckle that only Chloe has. We both had a good laugh.

Day +80!

20 more days to go until her evaluation. Then hopefully we will get the go ahead to go home. Chloe really is an example to me in many ways and one of them is being happy through trials. I was tired last night, missing my family, having to take care of a baby and do all I have to do for chloe and I was in a bit of a bad mood and wondering how to stay happy in my trials. What made it more frustrating for me was that chloe was in a super good mood. But what I didn't realize until this morning that I can take her example and try more to be happy. She hasn't been home since December, she has to take all the meds and doesn't get to play or go outside much. So I need to learn from her and just try harder to be happy.

20 more days! I it so close I can taste it, I day dream about that day!

Rain, Rain...

It rained last night, so there was water on our car. I had to go and get Rhen some formula and Chloe some cream for her eczema. I put Rhen in the car and was waiting for chloe to get in on the other side. She yelled over to me, "Can I touch rain water? It might be dirty." Man I didn't even think of that. It is crazy to me that a 7 year old has to think that touching rain water might make her sick, let alone know that rain water is dirty. She doesn't even flinch or be sad about it, she just knows some how. She is smart, really smart!

Clinic today

We went up to the hospital today for her check up. She looks good other than some eczema on her face and hands. Dang hard water! We will just get some creme for it. She is excited because she gets to come off two medicines. Her space ball she drags around daily and she is on amoxicillin that she can come off too. Those are big pills so she is glad those are gone. There is a sense of relief coming off pills, it fells more and more like it is coming to an end.
So since today is April Fools day me and chloe thought of something to say to Jake. So we called him up and said he wouldn't believe our luck. Someone ran into our car again at the hospital. We got him good, chloe thought that was real funny.