eSpecially Ben

tight to your perspective, or try a new one. I was not around when this was taken so when it popped up on the screen when I was downloading photos, I had to stop for a moment to collect myself. Then I noticed the brakes on the big wheels. At first glance it looks like Ben is taking the ride of his life. Brakes or not, isn't he?

As of March 2012, hotels were expected to comply with a set of ADA requirements. The pool and Jacuzzi, as well as bathrooms and other areas must be accessible. Many had a hard time meeting these requirements and a 60-day extension was given to the hotels. I fell into this information after booking a room through Priceline . After I booked online, I noticed the hotel's website mentioned ADA so I called to ask for a room with an accessible bathroom. Usually a handicap room means extra space in the room and bathroom. The hotel staff explained that I was able to get two adjoining rooms for the one price I already paid through Priceline. The room with the king size bed would be equipped with a handicap bathroom. When we arrived at the hotel, the staff was as helpful as they were on the phone. I was worried that this dream was too good to be true. I thought for sure, I was going to get slapped with a bill. However, we received the two rooms without an extra charge. The space was

 My sister, her three kids and my mom came for their annual trip to North Carolina. Whether we were swimming, playing mini-golf or painting pottery, the kids had a blast. Almost 10 days and not one fight among the six kids. Pretty amazing! For the first time, I kept Ben home from camp so he could spend all his time with the cousins. It was the right decision and worked well for this trip. Ben is on his new medicine regimen and I record every pill taken, at what time and Ben's activities and mood for the day on the computer. I faxed my observations to the doctor today and so far we are both happy with the results. Ben is more alert, happier, less sleepy during the daytime and his walking is stronger. I think it will take time and therapy for his walking to be what it was before this all started in March. i think you will even notice these photos show an alert and happy kid. Earlier in the week, two of Ben's drugs interacted to make for a very sleepy Ben. I gave Ben ano

These photos kind of say it all.

The phone rings and the caller ID reads "xxx management company". I pick it up, knowing it must be a telephone solicitor. The man introduces himself as someone representing our health insurance company. This can be nothing good - insurance companies don't call out of the blue for good news. I was wrong. This man was calling to give me his contact information in case I have questions in the future about Ben's claims and services. That was it - no cancellations and no complaints about how many times I call their offices. Just simply, I am reaching out to you for any future questions . Period, that was it. Smile on my face and good Karma sent his way!

Our visit to the neurologist was eventful and helpful. For one thing, she answered the questions about Ben's mobility problems and sleepiness. They are both side effects of the drug Clobazam . In addition, the medication, Doxepin , we are using to help Ben sleep through the night may react with the Clobazam and make him tired during the day. Plan of action - give Ben the Clobazam only at night and give one Doxepin pill, rather than two. If seizures do not occur, we may lower the Clobazam dosage. We also have room to increase Ben's Lamictol , another seizure medication Ben currently takes. We have Plan B, C and D too and they all involve changing doses if Ben has seizures or side effects. I have to keep the doctor informed about his progress. I did bring along my long list of dates with all the changes I saw in Ben since April and she was pleased with all the recording I did. (A star for me.) For the first time, I noticed that the doctor keeps a long list of seizure medication

For the first week out of school, I jam-packed it full of fun stuff to kick-off the summer. For the most part, Ben took all the goings-on in stride, but mostly he looked bored and tired. Finally at the pool, I saw a glimpse of the real Ben,  laughing and giggling. After finishing lunch, Ben kicked Kim (our long-time friend and community helper) and laughed like it was the funniest thing in the world. Once she caught onto his game, she teased him which made him laugh harder. He was trying to kick her and then push himself backwards in his wheelchair. When Ben slowly inched his foot toward Kim's leg, she'd "yell" at him to stop and that would get him laughing harder. Great fun! Later Kim got Ben to kick his feet in the water and then splash his hands too. I am hoping this is just the beginning of getting Ben back to where he was before the recent seizures. Later the same day, Ben had OT with a brand new therapist. She got to see some of his mischievous behavio