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Rainbow Camp 2014 - Week Ends Too Fast

Ben may have been asleep in the car minutes before he got to camp, but once he awoke and realized where he was, his excitement was visible. Rainbow Camp is part fun, part spiritual activities, but mostly about forming bonds and friendships with other campers, buddies and counselors. Hugs are abundant at this camp. This year, during their week of training, the counselors watched as a few of the parents of the campers talked about their child, the best ways to work with their child and finally, what Rainbow Camp means to their family in a video. Below is the video of me speaking about these things. I was lucky to have some help from Ryan, a family friend. Elizabeth, Ben's former teacher and now our family friend never misses a chance to give Ben a hug. Each day, a team of youth counselors create a puppet show for the group. Singing and dancing are always part of the fun. Play the game, "Where's Ben?"

Scale Shock!

Today we visited Ben's new neurologist, Dr. G. Ben's former neurologist, Dr. N, retired. For eight years, she developed plans for Ben's seizures, sleep issues, genetic testing and then tracked his progress with communication and cognitive abilities. Although she mostly used words that went over my head, she spent time with us, listening about developments and asking questions. We were never rushed and Dr. N was always precise and direct. At times, I wanted to remind her that Ben was not a toddler anymore and baby talk was no longer necessary, but even still, Dr. N was a hard act to follow. As with any doctor visit, the patient must be weighed. This office had a cool roll-on scale for a wheelchair. This saved me the lovely ordeal of holding Ben and getting weighed together, and then stepping back on for a solo weigh. This time, Ben's chair was weighed separately. The scale read 105 lbs for the chair and Ben. This confused me, but I had little time to contemplate beca

The Doctor Is In

When I researched nutrition for the Charlotte Parent article, I interviewed Dr. Sheila Kilbane. The information Dr. Kilbane shared with me helped to transform Ben's diet. Over the past few weeks we have kept in contact through email. She offered to share some of her posts, resources and knowledge with eSpeciallyBen readers.  The title to her first post is misleading - it is not just about pediasure. Take a look at it even if you are not a pediasure user. I promise that you will learn something new. Is there a natural alternative to pediasure? Mini Med School Ask the Doc Anything