The past couple of days Skyler has not been feeling very well. At times he seems pale with dark circles under his eyes. He has also been weaker. He started walking all by himself and was getting around really well but the past couple of days I have had to help him or let him use his walker. His temp also went up to 99.8 one night, the highest it has been since we have been home.  I was almost positive he was going to spike a fever landing him inpatient again. I was already planning in my head what I needed to pack, but by morning he was back down to normal. Thank goodness, Im just getting too used to being at home again I don’t want to have to go back to the hospital. Im not quite sure what that was all about but it has me worried. He also has been having extreme acid reflux or heartburn that’s been miserable for him. The medicine our oncologist prescribed for has to be taken orally instead of through his feeding tube and he wont take it because it tastes nasty and when he did try he just threw it back up. And the tums he is taking doesn’t touch it. It gets a lot worse when he lays down, so nights have been really hard for us. He wakes up at least every hour. He also woke up with a big headache today. I hope all of this passes soon and that its just side effects from chemo last week. I just pray he isn’t getting some sort of new infection.
We go back to clinic on Friday. He has to be sedated for a bone marrow aspirate and then back up for some more chemo. When I told him he was going to have to get a back poke again this week he said “That’s ok mom because I like the sleeping medicine and Im super strong so it wont hurt me” He is the bravest person I know. Also he was rubbing his central line yesterday like it was hurting and then asked me “When you were young and sick did your central line hurt too?” I hate the fact that he thinks this is a normal thing that everyone experiences when they are little. I hate that this is his new “normal” I wish he could just run around and play with his friends, and go to preschool. He loves his preschool class and teacher and is sad he cant go this year. I wish I could take him fun places like we used to instead of being couped up in the house all day. Our getting out now is going for rides in the car, but our last two rides he threw up so he doesn’t even like to do that anymore. I know this isn’t going to last forever and I am extremely grateful that we are able to be home, but its just hard sometimes.
　

One of the things that puts a huge smile on my face and makes all the bad go away, is when Skyler makes me surprises. These were my surprises he made for me yesterday….

                                                                     A beautiful flower

An awesome rainbow and heart

Thank you Skyler.  I love you more than you will ever know.  You are my everything and I am so lucky to be your mother.