We made it!

We made it through the month of February without having to go to the hospital! We broke our yearly curse. I know we are not through March yet, but to get past Feb. 15th was wonderful. We have all had our share of sicknesses, but everyone is well right now. No noses to wipe or suction, no coughs in the middle of the night, etc. We are so grateful for everyone who asks and worries about Ammon. He is actually doing really good this week. He has been doing his shout-outs, smiling, rolling over, and an occasional laugh again. It's so nice to hear noise from him. From the time he was sick in January his awareness and abilities started to decline again. I was starting to give up. He couldn't drink, he would barely eat, he would barely smile, he just seemed out of it all the time and his myclonic jerks were happening all the time. I just felt like holding him and saying Ammon Ammon-like when you watch on TV someone loosing consciousness and they say their name over and over and try to get them to snap out of it. I would try to talk to him and he wouldn't respond. A lot of times you could see his eyes light up for a second or two and then drift away. One day when he came home off the bus, the bus driver told me how cute he looked with his glasses on and that he kept them on the whole way. My first thought was what is wrong with him. It should have been -Oh that is great maybe he finally listened to all the times I told him to keep them on so he could see better:)J/K So I knew things were really bad if he wasn't even reaching to pull his glasses off. I feel like he forgets how to do things when his seizures become really bad and that he is just in a daze. His health(not being sick) has been good, so we continue to go through the motions of life even through the seizures.

Well, our neurology appointment finally came the third week in Feb. I was in tears telling the doctor how hard it was to see all of his skills and interactions gone. The more I read about seizures, the more I realize that the cure is trial and error with medications or diet and everyone responds differently, there is not a set cure. This is hard to understand because it's not a disease, I feel like the knowledge of seizures has been around for a long time-there should be a cure. So my crying didn't help and Ammon was put on a new medication. The side effects to this one is still the myclonic jerks, but higher risk to the liver, so we have to get his blood drawn for a few weeks to make sure his platelet counts are still good. Tonight while I was putting his pajamas on, his eyes were getting droopy and I said "Is Ammon getting sleepy, beepy(another phrase that makes him smile occasionally)" and he laughed. I was glad Brian was holding him to witness this. It's a moment we treasure now. He was doing a lot of shout-outs at church (he's the only kid in church that you encourage to talk anytime) and on the phone to family members also tonight. It is wonderful. I hope it will last.


Brynn has been such a joy. She definitely has a purpose here on earth and in our family. She is Ammon's second mother and friend. The first thing she does in the morning is go to Ammon's room, if he's not already up. She has to go out to the bus with him everyday and wave goodbye. She has started to get wipes when he spits up and yells Mom Mom. She gives him a new toy when he has dropped one. At some point during the week we will turn on dance music and I take turns holding her and Ammon and dancing with them. She always starts pointing at Ammon when I'm holding her to let me know it's Ammon's turn. She babbles all the time and tells you everything you ask her. The hard part is you can't understand what she is saying. It might be Russian. I have started using picture cards with her, to try to expand her recognizable vocabulary, so we can understand a few words now. She still signs a lot so I usually always know what she needs. She loves following Coleson around and is just starting to get on his nerves and started to want the same thing and have little fights. I have been lucky in that regard to go all these years without having our own children fight or argue with each other. Even though she knows how to make a good mess, I love this age when they are generally happy all the time and just a silly look can make her laugh. She is full of love.




Coleson is having a great time in school. Playing soccer at recess is still his favorite, but he also likes math and reading. He has always loved books and loved to read, but now he is really bitten by the book bug and will finish a whole book in one night. He has also been such a good help to me with Brynn and Ammon when I need an extra set of hands. I could go on and on about Coleson, I love him so much!