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.