Ammon gave me the best Mother's day present today, he smiled and laughed. I have not gotten him to laugh for months. Then he smiled a full smile. He does a lot of half, courtesy smiles, but this was a true full smile. That's how I knew I might have a chance at a laugh if I said the right thing or maybe tickled his arm.
I have been staying very busy caring for Ammon. He is still having good days and bad days (too many bad days). This week we went in for a sleep study. I was a little hesitant about going (I've already rescheduled twice) because he still has secretions that need to be suctioned periodically. I wanted to be able to go and have them say, he's doing great and we can discontinue the oxygen. I knew that wasn't going to happen because we have a monitor that beeps at me several times a night to tell me that he needs more oxygen or that his tube is not in his nose. That was the best part of the study. I didn't hear or see alarms the whole night! The respiratory therapist monitored all that--at 6 am I didn't want to leave,we were both sleeping so well. We won't know for a few weeks what the final results are, but his blood gas levels were good, so I think we will be able to formally be discharged from the bipap machine. I am just used to being the one who monitors Ammon's equipment and needs, so I already stopped using it, but the doctors wouldn't give me the okay unless we did the overnight study.
I thought being on maintenance was supposed to be better, but I'm still waiting. The week before last Ammon was throwing up, crying, in pain and I couldn't tell where, had no energy, fell asleep here and there, so then he would be up half the night too. I always pictured going through chemo would be like this, but it hasn't been this bad. Most weeks we have just had the crying and sleeping problems. He did have steroids on top of his once a month chemo, but in April we did the same thing and it wasn't that bad. Now on Thursdays I have to give him an oral chemo and so our weekend nights are horrible. I don't see what all the celebration was about. Maybe the doctors were excited because Ammon survived the first 6 months and so he has a better chance at surviving the rest? I thought we were excited because he was going to finally start feeling better and not have to go in so often. We still have had to go back every two weeks because of sicknesses. I usually don't get frustrated, but I just want the smiles to last. With the warmer weather, it does allow us to do a few normal things, if Ammon is having a good day.
After having a horrible Friday night, Ammon was doing a little better on Saturday so we took him ice skating. Finally a fun outing for him. We joined Hope Kids which is an organization that has several events a month for families with kids who have a life threatening illness. They hosted the event at the Ogden Ice Sheet where we could take him out on the ice in his wheelchair. The cool part about it was that Ammon helped Coleson to ice skate. Coleson pushed Ammon and that way he could stay up on his skates and at the same time do a service for Ammon. It brought tears to my eyes thinking that Coleson could see something that Ammon did for him.
Coleson had a great time making his first Pine Wood Derby car. He won a few heats and made it to the top 6. We figured he got about 4th place. He was so excited. Coleson gave me a cute paper flower basket that he made at school. Each flower had a different chore written on the back that he would do for me throughout the week. After bringing it to me he must have started feeling guilty because he brought me some more flowers which he had pulled out because he had recently already done those chores.
Brynn went to the dentist last week to have a cavity filled. I didn't know how she would do since she gagged and wouldn't open her mouth well just for x-rays a few weeks before. However, I know she can be extremely brave when it comes to shots, so we were going to try it without any nitrous gas. As soon as the TV came on the ceiling, she was fine. She did so good, we went ahead and filled the other cavity on the other side. I could tell she was a little numb from how she talked, but I was so proud of her for not crying, holding still, etc. I went to go pick up Ammon at a friend's house and ended up talking while Brynn went and played. As I went to buckle her in her carseat, I realized she had blood around her mouth mixed with chocolate frosting and a huge chunk bitten out of her lip. I knew I was supposed to watch for that, but after an hour had forgotten. She's the type that bites her hang nails until they blood, so of course she would be the one to chew her lip off. Ahhh! It swelled up about 3 times the size and it looked like a huge pouty lip. The next morning it had turned from bright red to an ugly brown, white, yellow mass. So gross. I think by the end of the week she was tired pf people staring and saying what happened or giving her a grossed out face. Today, it just looks like a big scab, so it's going to be okay. Ammon lost a tooth today and again, I was trying to monitor it but the next thing I know it's gone, he swolled it. That might be a little tricky for the tooth fairy.
That pretty much sums up the Cheney household for last week. I did want to write Happy Mother's Day to all of you. Especially my mother and grandmother's who have richly blessed my life.
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