Ammon's Progress

I'm glad Brian posts the important things about Ammon, please see the post below. I need to get back into the regular blogging, so I don't leave everyone hanging as to how Ammon is doing. I guess I just needed a break from always talking about Ammon's cancer and treatments.

It's been a hard week. I don't have nurses helping me or a mandatory break twice a day, or Brian's iPad during chemo visits, so at night I am usually just too tired to post. Last Monday Ammon finished his fourth month series of chemo which was every ten days. With each treatment the amount of chemo has been increased, so instead of feeling yucky for 2 or 3 days, it has been 5 or 6 days towards the end of this phase. Then we have about two days of feeling good, with Ammon smiling and responding again. Usually the day before chemo, his oxygen saturation rate increases enough where we sometimes take him off of oxygen, but then the chemo just knocks him down to start over again.

This last week I think he is developing mouth sores in his throat, which he was expected to get with the most recent chemo rounds. It's the only thing we can't cure in the middle of the night. He basically sleeps only for an hour at a time before crying. Then finally settles down around 5 am and sleeps until 11 or noon. After a few days of being sleep deprived I tried to go back to sleep after getting Coleson to school, but I think of too many things to do.

Brynn is also very excited to play with me. She wants to play beauty shop every morning. We have to have pretty lips, brush our hair (she has to put some hair in my face and then pull it back for me very tight until I say it hurts), check our nails to see of they need repainting, and eyeshadow. She usually picks a dark purple and blue eyeshadow for me. We usually don't go anywhere, so I have been letting her do whatever she wants to me. On Friday, we picked Coleson up from school and then I chatted with some neighbors outside while the sun was shining before going back in. When I came in I glanced in the mirror to find my rainbow eyes. The one time I go out in public and I forget to see what I look like. I don't know where she gets it because I really don't put on that much makeup everyday. I hadn't painted my nails for years and now they are always half way done.

"Mom don't drop anything down the brain"


The sleep deprivation has had a positive side. I really have enjoyed the few hours of uninterrupted time with Brynn in the morning. She always has to share her time with Ammon, and Ammon generally comes first. About a month ago she really wanted to sit in the rocking chair with Ammon and I, since that is what we were doing half the time. I told her she couldn't, there just wasn't enough room. She would still try to climb on us and I would really get upset. I tried to find a time when I could rock her and read a book, but it just didn't happen. Then one day I happened to be sitting a little sideways with Ammon in the rocking chair, and Brynn was able to nudge her way into a little corner in the back of the chair with us. She was so excited and with a big smile called it her little spot.

She is so good about helping me with Ammon, probably because if she wants my attention she has to join into what I am doing for him. However, I do think she is at the magic age where she loves to follow me around and do household chores and really mimic what I do. She has learned to pour the soap and start the dishwasher. She is right there helping me change diapers, particularly the blowouts. She still loves to vacuum and sweep. She started cutting Ammon's tape for his feeding tube dressings. She could probably give Ammon his medications if I let her. She gives them to her babies with the syringes pretty well. She asks when she grows up and is 4 can she then give Ammon his medicine.

She makes us laugh. One week Brian was out of town and she asked when Daddy was coming home. I told her he had flown away in an airplane and wasn't coming home for a few days. She then turned to Coleson and with a sincere sense of urgency said "Coleson, we need to turn into monkeys and fly on a balloon and catch Daddy's airplane to see him." It sounded like a Curious George plot. She tells Ammon she loves him and gives him hugs just at the right times. I took the kids to Toys r Us on Saturday and she right away picked out a squishy lizard. "This for Ammon!" I'm glad I had enough sense to stop myself from saying he doesn't need that and let her get that for him. She has been what gets me through everyday.

I don't want to leave Coleson out. He has been amazing at getting himself up and ready this week while I try to get myself out of bed. He continues to excel at school. He was assigned to read a book which he discovered had some swear words in it. He asked his teacher all on his own if he could switch books because he didn't feel comfortable reading it. His teacher let him switch, which also meant he had to read 200 extra pages in a week. He did it.


Thanks again to our neighbors and family who come over to clean, bring meals, and watch Ammon so I can watch Coleson's basketball games. Thanks for the continued prayers. As far as cancer cell counts go, Ammon is beating it (did you ever doubt). We have a week off before we begin steroids again and new chemos. The steroids we already know make him inconsolable for several days. It will be a rough month. So we are going to enjoy this week. We are going to savor every moment.

My parents are coming to visit and help in a few days, and the kids can't wait!

The Cow Who Coudn't Moo...

We'll have a much needed Ammon update out here shortly. I wanted to share with you a fun story that a friend of ours wrote for Ammon. Ben is a good friend of our family and a very good friend to Ammon. He wrote the following story (and even drew the pictures) and presented it to Ammon as his Christmas present. You'll notice that Ben, just like many of us, has frequently seen beyond what our natural eyes show us, and has witnessed Ammon's strong spirit. Ammon's many abilities to inspire good and joy will always outweigh his apparent physical disabilities. Thank you for sharing through this fun story, the strong and brave Hero that we have the opportunity to be near everyday.

If you can't see the words clearly in the pictures below please let me know and I'll type them in.

Video and an Update...

Sorry for the lack of updates over the past few days and to leave some of you hanging as to whether or not Ammon made it home from the hospital. Ammon performed spectacularly and came home Thursday afternoon. Unfortunately, Summer and Ammon returned to a sick husband. Summer apparently wasn't far behind and we've both been sick through New Years. Getting sick for New Years is a sort of common thing for me, but it was a real downer to have all of us sick. Apparently we weren't the only ones, and many family and friends were down with various illnesses as well. Taking care of Ammon with both of us sick proved to be quite the ordeal and hopefully one that will never be repeated. Granted, Coleson and Brynn probably watched more TV and movies over the last several days than they do in a month (at least that part was fun for them). Couple other quick thoughts from the last few days.

Last night, Coleson graduated and became a man. That's right, he watched Star Wars: New Hope for the first time. Awesome, is an understatement! Tomorrow, in order to make Coleson's journey complete, we are watching The Empire Strikes Back and Return of the Jedi. I'm a very proud Dad to say the least, and have loved hamming this up!

Brynn attended Primary for the first time today and just loved it. She knew many of the words to the songs, thanks to Summer. She did such a good job and just loved being with big kids. I stayed home with Ammon today, so I'll have Summer write more in another post. But when Brynn came in the door she confidently proclaimed, "Dad, I sang really loud so that you and Ammon could hear me." Thank you Brynn!

We saw the following short video over the past few days, it's really only a few minutes long. We instantly loved Brady! If you have just a few minutes please click here for the video. Brady has seizures very similar to Ammon, although Ammon's were not near as frequent. Also similar to Ammon, Brady brings an instant feeling of love and joy just by learning about him or being near him. Though Ammon's seizures have reappeared since he's been off the ketogenic diet, he has been blessed with them occurring much less frequently and less severely, then they ever were before (that's another tender mercy for all those keeping count).

The video does end on a sad note, but not entirely when viewed from a gospel eternal perspective and realizing how successfully he miraculously performed his many missions. You'll also see great love and care at certain parts when his father is holding him while he's running, just in case Brady has a seizure he is there to immediately catch him. His father's final thoughts at the end of video speak largely to what we have been feeling and expressing about Ammon for so long. In speaking about Brady, he said, "Our Heavenly Father knows who he is inside and out, and his poor little body is broken, and beat up. But he's whole! I believe Brady's here making us whole." We are so glad to have Ammon with us, and rest assured he will continue to be with us until his hair falls out from old age (not chemo).