January 29, 2006

After taking the weekend off from blogging we have had people inquiring what has been happening and checking to make sure we are all okay here.

There is nothing exciting going on in Denver. We have had a very uneventful weekend at home. I can barely remember Friday night it was so uneventful. We did get Leah's new prescriptions filled so she started new medicines that night. This means 3 new drugs two times each day. UGH! The one medicine is very acidic, but said nothing on the container so we gave it to her like the other medicines-just put it in the dropper and squirted it in. This seemed fine on Friday night, but Saturday when we tried this she threw up everywhere after about 30 minutes. Only then did I question the medicines. At first I thought it was too many things to take all at once, but later I came across the directions that include diluting the one med. in water and then drinking a half a glass of water after finishing the medicine. While I am sure this does make it better, Leah spends hours trying to get the medicine down--5 sips every 5 minutes, or whatever other thing I can think up-and has no desire to drink more water when she finally gets the medicine down. We are trying to work on our evening dose right now and each time there seems to be more resistance.

Leah is very tired this weekend. We go for a finger poke tomorrow and I am certain she needs blood. However, there is no magic number about when she must be transfused and she has been planning on going back to preschool for weeks now. Tomorrow is her friend Connor's birthday that she does not want to miss. I know that if she needed to be at the hospital we would have to go, but want her to get to be "normal" for just a few hours of her day. That means Tuesday we will need blood for sure. I am working on contacting a nurse at Covenant who is able to access ports. Having a transfusion in Waterloo would seem much more convenient than driving to Iowa City a few times a week.

My sister, Suzanne, was back this weekend and spent a large part of yesterday taking care of Chloe and entertaining. Leah and I went to the Sunset Home both yesterday and today to visit GG, and she and Suzanne and Chloe got to the Denver store. Leah's new favorite food is pancakes, so each day we make a new batch. Part of the appeal is that she enjoys mixing them up.

Chloe's excitement of the weekend is that she now has a twin bed in her room. She was using her crib that converted to a daybed, but it was still not conducive to have anyone try to lay in bed with her. The crib mattress is just too small. She is loving having a Dora bed (comforter and sheets) like Leah and did sleep in her own bed last night. I don't think this is a real time saver for me, though. Now I take turns lying down with the girls and go back and forth between rooms to get them to sleep. The one thing I have going for me is that Chloe has not been napping so she is very tired for bedtime and has been falling asleep quickly. Leah, on the other hand, is sleeping so lightly that if I even roll over while lying in bed with her she grabs for me. I am not enjoying these sleeping arrangements, but if I were in her shoes, I would like someone to be with me, too.

This coming weekend is Dance Marathon in Iowa City. We are signed up to attend and will be spending Friday night in a hotel. This is a big fundraiser for children's cancer that many, many families take part in. Leah still does not know what to think of it, but we are looking forward to it.

It is almost bedtime here. I am trying to hold off for a bit so I can see Desperate Housewives. I have missed so many episodes this year that this is a new one to me. Chris also got to attend our church's wild game feed. We joked with Leah that he was going there to eat a dead raccoon and skunk. She thinks this is all pretty funny, and told him not to bring any back for her.

AFP numbers are always at the back of our mind, our at the forefront around 3 AM when I am not sleeping. I have been doing a great deal of praying that the doctors will make good decisions about how to best proceed with treatment and also that her tumor is shrinking. We know that many, many people are praying right along with us and we ask that you continue to do so as Leah's treatments continue. I do plan on posting each day despite my weekend off, so please continue to check our blog.