What a weekend... what a summer! This has been an eventful summer for our little family. We went to Nashville and got good news. Josh and I went to Florida, leaving Ami for the first time for more than 24 hours. And we had another wonderful birthday. Plus a bunch of little firsts. It's been nice to finally have a handle on this disease, and be able to do things because we aren't afraid any more.
Birthday weekend started off with pictures with the wonderful Erica Turner. I'm excited to see what they will look like this year. Saturday was the party at Dan Kinney park. I love that park, and the party went very well. Ami ate a whole slice of pizza, and the icing off a cupcake. It was unbelievable. He got lots of fun toys, some new clothes, some movies, and Mickey Mouse. I got him a giant Mickey Mouse balloon that is taller than he is. That thing goes every where he does. Ami will grab Mickey by the hand and drag it all around the house saying, "Come on, Mickey." Sunday we went to Branson, and walked around the Landing. Then that evening we went to a Springfield Cards ball game. He didn't understand what was going on, but running round in the grass and people watching was great.
I think Ami is starting to recognize when he needs to go potty. Friday he was grunting, so I asked him what he was doing. He told me "Potty" so we went, and he went. Then last night, in the middle of the episode he had, he said potty again and this time he peed! I'm getting excited, but I'm also afraid it's going to be very hard finding underwear small enough for his tiny tushy.
We took the bottle away a week and a half ago. The first three days were the worst, but since then it's been great. Dr. Moore put him on a higher calorie Pediasure, and increased his daily caloric intake. To better manage his calories we started a schedule. His eating, tube times, and naps are all scheduled. It seems to be working out so far. She increased his calories so much that it would be impossible to manage everything without one. Hopefully we will see some more growing.
Last night we had a huge episode. I'm going to call it that because I don't know what else to call it. Ami woke up screaming in a way I have never heard him scream before. He seemed to still be asleep, but he had his eyes open and was semi responsive. Then he would become completely responsive, but then start screaming again and be less responsive. He would stare through you, but also cling onto you like his life depended on it. He was shaking, and crying. It lasted about 10 minutes. I finally turned the hall light on and Josh set him on his feet, and he started calming down. He then said he wanted to go the potty. I wasn't sure if he was going to throw up, or if he wanted to take a shower. Josh set him on the potty and he peed. Then we sat on the couch for 30 minutes and watched a show. He went right to sleep, to wake up again in an hour screaming again. This time it took much less time to calm him. I don't know what was going on, but I hope it never happens again. It was horrible. I was truly scared that something was really wrong, and I don't scare that easy anymore.
I'm sad to say good bye to summer, but this fall is going to be a lot of fun!
