clinic appointments

We had a couple of trips to primary in the past week. One was last week to the dermetologist, which was a waste of a four hour drive, didn't tell me anything I didn't already know. On tuesday our regular visit went really well. We still have to go down every two weeks until her tapper is over in aug. but she looks awesome. We still put on creams gallor, but tappering so far hasn't caused a flare up. This morning I had a big scare, Rhen had gotten on the table to where chloe had taken her pills, opened them up and ate some prograf (transplant anti-rejection pills) and some acyclophere (an antibiotic). I was crying and so worried, I called poison control and after some checking and giving him the the dosage that he took, he said that he didn't think he took enough to hurt him. Luckily, he took the smaller dose of prograf and not the bigger one. Thank goodness for poison control!! The man was so nice and understanding of my crying on the phone. When they called back two hours later, and he was playing and having fun. He does have major runny poop though. All I can think of is tender mercies!!

love the imagination

Elsie has the biggest imagination I know. Last night when Jake went to tuck her into bed she was kicking back on her bed (well the mattress that is on the floor, for another post) holding a pretend remote for a tv. She was pointing it to her Jesus picture on the wall. When Jake came in the room she hurried and (pretended) to click it. Jake asked what she was doing and she said I was watching tv and it was on an immodest channel so I had to click it back to the Jesus channel.

the tapper is on!!

Hilary (her nurse practitioner nurse) was so glad to see the progression the new cream has had on chloe's rash. So we got the tapper schedule on the Prograff pill (which is an anti-rejection pill) and will be done in the middle of August (we are hoping nothing prevents the taper). So we are hoping school in the fall!! OH MAN, she was so excited about that (prayers are answered)! She will still be on her steroids, but it is such a small dose that is can be tappered off in two weeks. I asked about waiting the few months being off the meds to go to school and it seemed no big deal to him. So I am hoping we don't hear another story when we go next time because we happen to see another doctor. That is one of the frustrating things with this is that one doctor will have an opinion about how we should be cautious and then the next time we see another doctor who doesn't think things are a big deal, example, last visit Jake was told no to camping, today we saw another doctor and he asked if we had plans for this summer and I look at him like, are you really asking me this? I told him that she can't do much, but he seemed to think camping would be fine if we are cautious and have a trailer. So go figure. We will just use our best judgement, I guess. We had a good clinic visit today!!

all boy

Rhen loves to eat markers, baby shampo, toilet cleaner, dirt, chapstick, glue and everytime I go to get it from him he laughs and runs. He has figured out that it is a lot more fun to be outside than inside, here he is at play...

Anything that comes out of Rhen's mouth whether it be comprehensible, or not ends with the word ball. He loves balls and is entertained by them for hours. He has the cutest fish face while he eats the chapstick. He walks around digging his finger in the chapstick sucking on his finger and then walks around with his cheeks sucked in.

He is learning how to drive, his dad wants him to start early so when it comes time to take the fj rock crawling, he is ready!

pinewood durby for girls...sweet!

Addie and Chloe were pretty excited when they were able to participate in the derby in activity days. They had a fun time racing their cars, both chloe and addie won a race or two. Addie got most original, her sweet ballerina shoe, and chloe's was a cute duck! Looks pretty life like!

Chloe update: with the help of prayers and the new creams we got, her rash is 90% gone!!! She looks so smooth and soft!! We are excited to hear in a week or so if she can start her taper!!

the "no" word

Yesterday was a typical clinic day. Chloe's gvhd rash continues. Her creams are now burning her skin, so when I put them on she cries for 20 minutes because it hurts. The docs say that this is normal for the gvhd rash. We are trying a new cream, twice a day and alternating this other cream which has to be put on at different times than the other one. Jake joked that she is going to have to go around naked all day! So there is to be no tapper of her drugs yet. We have a family in our area who gives horse riding lessons and they called to put chloe on the list but of course we have to ask our doctors. They said no, maybe next year. Chloe had to blink away the tears, trying to be strong, and Jake said it was all he could do to not cry as well. We are getting annoyed with the "no" word at our house and shed many tears because of it.
I know that it looks inevitable Chloe won't go to school in the fall, but we started a new prayer in our family to ask specifically that she be able to go as soon as possible. And since we know the power of prayer, we would ask those of you who want to, to pray along with our family that she can return to school next year. I know with the tapper of drugs, she might not start in the fall, we are just hoping it will come soon. This has been really hard on us so we thank you for your care and support.

ronald mcdonald buddies

It has been a year since we busted out of the Ronald McDonald. This is one of my favorite pictures of me and Chloe at the apartment. Lots of times when we go down to clinic we drive past the street where the apt is and I ask chloe if she misses having to live there, and she firmly says no. I am grateful to be able to be home, but I honestly thought she would be further in the healing process. She is so tired of taking her meds twice a day, doing creams, changing dressings, and have a spaceball hooked up everynight and not going to school. She says she is tired of her routine. I don't blame her, because I am too. But I am thankful to Chloe for being such a special girl, I told her that not just anyone can beat cancer twice, and have to stay home all the time and do this crappy routine for four years, yes she is a special girl! I am thankful for my other special girl, Addie, who is a great big sister and who has to give up a lot because of her little sister's health issues. For Elsie who makes us laugh pretty much everyday, Rhen for being able to endure the first six months of his life in caos and having a smile that always melts my heart, for Jake who I could never live without and I am SO thankful not to be in the Ronald Mcdonald apartments. ( I was greatful for it, but don't want to have to go back).

lost and found....again

I think we could fill a whole book of things elsie does and says! This weekend was my turn to go to church and Elsie was really fidegty when we got there. During sacrament, she kept asking me if she could go get a drink and go to the bathroom, stating she had to go really bad. I told her no because being her mom I know when she really has to go or not. So finally it was over and I had Addie take her to the bathroom. Addie came back without Elsie. I asked her where she was and Addie told me when she was going into the bathroom, Elsie laughed and said she really didn't need to go to the bathroom, she just acted like she did, and that she had to get out of the church, and she ran out the door. So again for I don't know how many times we have done this, we go searching for her. She wasn't in her primary class, wasn't outside, wasn't inside. Finally after twice going around the church and outside, then recruiting some young women to help look for her we found her in her class sitting down. I have no idea where she went she just said she was hiding. Well at least in the end she choose to come back to church, right? (haha)

Rhen's lovin' the salsa

chip dippin salsa lover! ditches the chip and grabs his fist full of salsa.

Easter pics

Elsie apparently loves to pose for pictures as you can see in this one above with all my girls.

We had a fun easter. Dinner with Spence, Tal and Avery, nice weather, good company and a good burger, can't get better than that!