Well, the short answer is everything has been going \u201cOK\u201d recently.\u00a0 Peyton turns 19 this week, and is enjoying the summer by reading a lot, going to movies, baseball games, and getting to hang out with friends and family occasionally.\u00a0 He\u2019s been getting lots of compliments on his new beard as well, although we\u2019ve been trying to get him to shave for the hot summer!\u00a0 He continues to do well on the Cyclodextrin treatments, and endures a lot of physical therapy and workout sessions.<\/p>\nKayla has gotten to go on a couple trips with the youth group, and a special girls trip for her 16th<\/sup>\u00a0birthday.\u00a0 She\u2019s also been swimming, reading, and done some occasional volunteer work.\u00a0 She also continues to do well with the treatments. The only negative with both kids is slight hearing loss in the higher spectrum because of the Cyclodextrin.\u00a0 This is a problematic side effect of the drug that affects maybe half of the patients.\u00a0 We are currently trying to figure out a solution, but no luck so far.\u00a0 If anyone knows any Audiologists that would be willing to help, let us know!\u00a0 The drug is now in phase 2\/3 trial, and continues to show promising results.\u00a0 Hopefully the trial will finish within a year, so they can start the process of getting it FDA approved so ALL NPC kids\/patients can receive treatment\u2026..and of course, we are still funding research to find the \u201cnext\u201d cure!<\/p>\n Speaking of research, Laura has been enjoying working at Sunstone Research for almost a year now.\u00a0 They conduct clinical trials \u00a0for newly developed drugs, so it\u2019s right up her alley.\u00a0 She has recently been excited to be part of a new trial with a drug for Alzheimer\u2019s disease, which was actually looked at for NPC a few years ago!\u00a0 We\u2019re hoping the next trial will be for Niemann Pick!<\/p>\n We hope everyone is doing well, and enjoying the summer.\u00a0 If you are like us, it has already gone by so fast!!<\/p>\n
\nWith Jonah, he\u2019s either working out, reading, or eating!\u00a0 The kid is getting tall, and will be 14 next month.\u00a0 We have no more little kids\u2026.\u00a0L\n