eSpecially Ben

 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

Separately, Ryan and I have been thinking about ways to get Ben on a bike ride with the entire family. Once we realized we both had this fantasy of family bike riding, we discussed what was available for Ben - seats, attachments and carriers. The equipment we have seen are simply too small for Ben since they are made for toddlers and young kids. So when Ryan and I had a few hours on our own and happened to be near our favorite bike shop, we went in and hit the jackpot. We were introduced to a program called, Lose the Training Wheels , soon to be called iCan Shine . This national camp-like program is specifically for children with special needs - physical and/or intellectual. With trained volunteers and parents as part of the process, they have had huge success in teaching children to ride bikes. Ryan and I are not convinced that this will be a program for Ben, but we think they will at least have some ideas on how to find something we can pull along on one of our bikes. But who know

The director at our local YMCA forwarded me information about a Miracle League Field being built at a YMCA just 15 minutes from our house. I was not familiar with the program, but after reading the information and viewing the YouTube Videos from Long Island, Michigan and San Diego, I cleared the tears away and signed us up to receive information. It looks like a great program for all families - whether as a team member, buddy, coach or volunteer. Here are some of the resources I found: General Miracle League Official Website History of Miracle League Videos Long Island, NY Miracle League - Video Tiger Weekly, Michigan - Video San Diego - Video  - This is the most touching one and I offer a "tear-jerker warning" Charlotte, NC Charlotte, NC Miracle League  - They want 40 team members for the opening game - I am hoping Ben will be one of them! Charlotte Observer Article If baseball is your thing, check out if they have a program near you - there are 250 intern

Sean was too young to remember his first visit to Tweetsie Railroad . He made up for any lost memories. They all look scared because this was the Free Fall ride. It was not that bad. This was as bad as it looks. A lot of spinning! Panning for Gold. Bank robbers took over the stagecoach. Someone offered to take the entire family... We spent most of our time at the theme park on these horses. And if this was not all enough, Thomas the Train was here too. Carousel ride for Ben. I had no idea these were the faces they were making.  Ben's driving these two lunatics around. We took the kids to Tweetsie Railroad in Blowing Rock, NC on Sunday. It has a country western theme complete with cowboys, Indians, forts, steam train and plenty of fake horses for the kids to ride on. This may have been our 4th time going - I worried the kids may have outgrown the park, but they proved me wrong. We had a great time and lasted for a record 7 hou

Sean decided to snap a few photos today and he used Ben as his model.

I've worked with your flower, And helped it to grow. I'm returning it now, But I want you to know... This flower is precious, As dear as can be. Love it, take care of it, And you will see... A bright new bloom, With every day. It grew and blossomed In such a wonderful way. In September just a bud, January, a bloom; Now a lovely blossom I'm returning in June. Remember, this flower, As dear as can be, Though rightfully yours, Part will always belong to me! --Author Unknown Ben's teacher sent this poem home, along with a letter describing her experience with our children this first year for her as a teacher. She also included a photo album for Ben filled with pictures from this year. Here are a few of my favorites: I won't include photos of other children from Ben's class, but there were several in there - always with the other classmate giving Ben the biggest hug. I know one little girl includes Ben in her prayers every night. I am glad to have a ph

This is an essay written for a graduate program application by someone who has known Ben for about 4 years. With Nicole's permission, I am posting this. I changed the name of the university. Working for the YMCA of Greater Charlotte exposed me to a lot of children. One of my many jobs at the YMCA is to teach swimming. As a swim instructor, I started teaching three-five years old how to swim. It was an amazing feeling and I enjoyed seeing the big happy smiles on their little faces. The Aquatics Coordinator had one specific child named Ben that she was assigned to instruct. Ben was five years old and has Cerebral Palsy. He does not talk, but makes loud noises in the water, which was a sign of his happiness. As time went on, I would say hello to Ben. I begin meeting his family and I would always give Ben hugs while he would pinch my cheeks and grab my hair. One day the Aquatics Coordinator came up to me and said that she had a new job offer in New York and was leaving in a mont

Three years ago, my sister and I surprised my mom for her "big" birthday (I'd be disowned if I listed which exact big birthday) and whisked her away to celebrate in Washington, DC. We had so much fun that we decided to make it an annual tradition. This year, they visited me in Charlotte and we shopped, ate and worked it all off doing Zumba and Pilates. Next year...perhaps DC again, it is smack in the middle for all of us, making travel plans easy.