Sunday, January 20, 2008

I'm really starting to get lazy about this. It seems like when I think about writing I'm frustrated that not a lot has changed and I find myself telling people the same thing over and over again. Elijah is still touchy with his mood, but I think that he might be starting to have more good times than he was. As of this morning he has 10 neutraphils!! YEA!! Ten isn't much, but it's more than O. The goal number is still 500 but this is all about baby steps. His hemoglobin was down today so they had to give him some blood this afternoon and I kept thinking that maybe he would cheer up a little, that still hasn't happened. The "kidney" doctor was in this morning and told us that they are having a hard time reading the ultrasounds and so if his blood pressure continues to stay high over the next couple of days they will plan to do a CT scan which will give them a better look. We hope and pray that everything is normal because if he needs to have any kind of surgery to fix this we would have to go somewhere else. Apparently the resources in Des Moines are not abundant, who would know?? Dr. Al-Zein said that as far as he knew the closest place that there would be a doctor for this is Omaha (Mayo). We do not need to be moved anymore, unless it means we are going home. Today Dr. Al-Zein said that discharge could possibly be on Thursday, but he has his bone morrow and Chemo on Friday so it might make sense to just stay until then. I think he is probably smart because we don't want to finally take Elijah to his home and then turn around and come back the next morning. This morning was the first time that he asked to go home. How sad!!! How does a person explain to a three year old that we are here for another week. I predict that this will get increasingly worse the better he feels. He keeps telling us that his head hurts and Meredith was telling us today that his hair follicles might hurt with his hair falling out. Some things are so hard to know with his age and the amount that he is able to tell us, or even understand himself. My dad and Tess came today and sat with Elijah so we could go to church. It was nice to be able to do that, but it was a little weird that we could just sit there without a squirmy baby or a bored toddler. We finally convinced Elijah to clip his remaining hair. I had mentioned before that he was starting to sleep on his stomach a little bit. There was hair all over his face, in his mouth and his eyes. He said it would be okay to cut it, the surprise came when he saw all of it on the floor. He got really sad and said "my hair runned away". We did not expect this reaction at all. In fact I thought he would be just fine not having to deal with hair washing and putting gel in it. Since we cut his hair he has complained that his head hurts, and so we don't know if it's uncomfortable from it rubbing wrong on his pillow or hurts from it falling out. We have put a stocking hat on him a few times and it seems to help a little, but I think the hat gets annoying too. I'm going too sign off for now. Enjoy some of the new pictures. Love you all!!


Marye said...

Amanda and Levi,
It was really good to see the two of you in Church today. I know it took a lot to come but I know it was meant to be. You are a very strong family.

The Vali's said...

I'm so sorry we haven't been up to visit. I've been traveling for work the last two weeks. I've also been really run down and sniffly and I know you can't take any chances of having anyone around with a cold or anything. But, I've been thinking about you a lot and it's nice to see how everything is going out on this website. Take care. Our thoughts and prayers are with you. Love, Amy & Vik

Anonymous said...

Amanda and Levi,
I'm always very glad to read the blog, whether it be good or bad. It's a nice connection to have. Anyway, we have been fighting head/throat/chest junk for the past weeks and don't want to share. As soon as it gets bearable we will visit.

We love you and pray for you.

Love the Forry Tribe

Leslie said...

You all look great with the shaved heads. Our little guy, Isaac would take part if he had hair! I hope things continue to improve even if it is gradually. Did you get the package we sent? Hopefully I had the correct address. We miss you and are still praying for you. Love, Gary and Leslie

Courtney said...

I think it's great that the guys shaved their heads for Elijah. We are praying for Elijah and your family. Let us know if we can do anything for you.

Doug & Courtney Giles