Research into Lysosomal Storage Disorders

This article was shared and it sounds as if this discovery my offer some direction for future medicines and therapy for diseases such as Battens. The information in the article is credited to Baylor College of Medicine. Click here to read the article.

DNR Stands for "Do Not Resuscitate" not for "Do Not Relay"

Recently, I was interviewed by a local news station about school policies concerning children with DNR's. Macayla had a DNR while she was going to school. From my understanding at the time of interview, the school district wanted a policy in place that did not allow them to enforce or enact the DNR during a crisis requiring life-saving measures. In other words, they would perform life saving measures until EMS or other medical professional arrived. I later learned that the real story was the school district wanted a policy that they were not responsible if the DNR was not passed on to medical personnel such as EMS. This is another issue entirely.

Augmentative Communication for iPad & iPhone

We really wished we had learned more about aug com (augmentative communication) much sooner with Macayla. It would have helped her put some skills in place earlier while she still could. However, it did not make sense for us to have the very expensive computerized aug com systems with touch screens that was out at the time. Amazingly, Apple's iPad and iPhone have revolutionized the availability of this technology at a fraction of the cost.

iPads have larger and more accessible screens, but iPhones or iPod Touch work for those with the fine motor skills to manipulate items on their screens. (An iPod Touch is just like the iPhone minus the phone capability.) They all have built in cameras. The iPhone and iPad with cellular connectivity have the benefit of not needing a wifi network to access the internet. In other words, you can access the internet anywhere. The iPod needs to be connected to a network wirelessly. For the non-techies out there, this may sound a bit overwhelming, but these devices were designed by Apple to be intuitive and to think like we do. People who have never spent much time on computers figure these things out very quickly. Plus, when they are not in use for aug com, they have all the functions of a laptop. Email, web, word processing, photos, movies, calendar, music, etc.