I spent today packing to take Josie on a 3 day 2 night trip. I mean that literally, I spent the whole day packing for this. It is just the two of us, but she requires a lot of stuff packed in as little space as possible so I can handle it all plus her by myself. I made a list of things that need put in the medical suitcase that I can't pack yet. I will spend every moment between now and the minute our plane departs worrying I will forget something crucial. I am proud that I have managed to fit it all in two carry ons, a small feeding pump bag, and a small diaper bag. And we have a portable oxygen concentrater that is as big as a carry on. She is strictly g-tube fed and on oxygen and a pulse- ox at night. The oxygen items will be really important because we will be in Utah were the elevation is higher and it is more difficult to breath if you aren't acclimated to it. Josie is participating in a study for kids with congenital myotonic muscular dystrophy. They check year to year how the child is doing. Like many things with Josie, it is a little difficult.  Last year the testers didn't understand CVI at all and tried to get her to visually track and grab objects while I tried to explain that while her eyes work, her brain didn't process what she sees. I have some seen improvements physically and cognitively for for her since last year, but I don't know how much the testers will see. She is so far behind most other kids with this condition. I hope they know what Gray Matter Heterotopia is so I don't have to explain that too much. The thought last year was that she would be vastly improved and maybe somewhat mobile by the time she came back this year. She still isn't holding her head up well, much less mobile. They really stressed the importance of therapies. Josie has 8 therapists, and I work with her extensively every day on our own. I don't think there is any more that we can do, and hopefully it is understood that she will progress in her own way in her own time and not see it as a lack of effort. I am nervous but excited to go.