Friday, June 29, 2012

The Cousins are Coming! The Cousins are Coming!





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 another sleeping pill when he awoke at 1:30am one night. The second sleeping pill, Doxepin, combined with the ONFI at night, made for a very different Ben the next day.

For nights when Ben cannot sleep, we may have to ride the wave or risk a drugged-out kid the next day. I will continue to record meds, dosages, moods and sleep schedule. I found patterns in just one week of charting this information. By sending this directly to the doctor, I did not have to relay it to the nurse over the phone who then translated it to the doctor. Inevitably, something is missing from my message by the time it gets to the doctor. Then it takes 1-2 more phone calls to get it straight. I highly recommend the "type it out and fax to the doctor" method.

Ben's handprint on this mug. I am not dure why it is upside down, just happy it is not a big smear.

Sean floating in the "big" pool.
Ben at the sprayground.

Six kids - there's bound to be wrestling.

This may have been the fastest mini-golf game on record. Who knew you could place your ball wherever you wanted? Wait for your turn? That rule is for other families.

Sean took dressing-up to a whole new level at Discovery Place Kids.

Ben's almost as big as Grandma.

And the water fights...

Tuesday, June 26, 2012

Monday, June 25, 2012

Surprise Phone Call

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!

Saturday, June 23, 2012

Drugs and Other Drugs

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 medications and for each one we have tried on Ben, she writes down his reactions/side effects next to its name. We still have several left, luckily.

I asked if managing Ben's seizures would get easier as he gets older with stable weight and brain growth. She said that she did not know because she strongly believes Ben has some sort of syndrome. I had forgotten that at the March appointment she told me about GeneDx Epilepsy Panel - a genetic test for over 100 gene abnormalities. She thought it could help determine more information about Ben's seizures and the best medicines to help his specific disorder. This test was made available recently for a reasonable price for families - typically under $100 after insurance payments.

I was supposed to think about it back in March and get back to her, but it slipped my mind. At this visit, I told her to start the paperwork, we would give it a try. I am doubtful that they will find Ben's syndrome, but if they do, it would be nice to finally have a solid answer to the frequently asked question, "Do you mind if I ask what your son has?"

As an aside, the doctor's first words to us were - "Wow, Ben looks so alert!" For the entire appointment, Ben made noises and smiled at the doctor, trying to prove me wrong about his listlessness. Oh well, call me a liar!

Thursday, June 21, 2012

It's Tough Being a Kid



We visited Ryan's Dad this past weekend. He lives up at Lake Lure (most known for being the set of "Dirty Dancing"). Ben had a great time in the water and especially on the inflatable boat where his brothers did all the rowing. After eating almost 2 hot dogs, homemade ice cream and chips, he found his spot on the pontoon boat and dozed.
Logan loves the look Ben gives him - the look of love. It is easily seen here. Logan tells everyone that Ben loves him best, and then points to me and says, "even more than he loves you." I cannot argue - I do not get that look of adoration.

Wednesday, June 20, 2012

Glimpses of Ben

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 behavior and quirky personality. To get away from her, he crawled onto the couch giggling the whole time.

These glimpses give me hope that the Ben we know is still there, perhaps just hidden by medication and seizures. We see the doctor this week and I hope to get some answers, solutions or at least a strategy to help Ben.

Tuesday, June 19, 2012

Lose the Training Wheels

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 knows, perhaps they will prove us wrong. I will be researching this in the coming future.

If this is something for your child, check it out. They have programs in many states and in Canada as well. It looks like they are expanding their services to gymnastics, swimming and tumbling. I do know that the salesman at the bike shop sang their praises. He looks forward to the summer camp because of all the kids learning to ride.



** After reading this post, Sandie, a mom who writes on the ACC Blog, gave me this link: Wike Large Special Needs Trailer. I am excited to check this out. I am even more hopeful that we will be able to take family bike rides.





Thursday, June 14, 2012

Miracle League

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

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 internationally with more leagues added each year.

Wednesday, June 13, 2012

Wild Wild West

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 hours with their parting words being, "When do we go back?"

Sunday, June 10, 2012

Littlest Brother's Perspective




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

Friday, June 8, 2012

Last Day of School

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 photo of her.

Yesterday, I visited school during a field day the special education teachers planned for the Special Academic Curriculum (SAC) classes. Invited to this all-day event were the peer buddies who have been assigned to work with the SAC class children one-on-one during physical education and the Special Olympics. I was interested to meet Ben's buddy. I asked one little girl if she was Ben's buddy because she was hanging out with him. She answered with a protective attitude, "No, but I am his friend." That is cool on so many different levels.

One thing that had a profound effect on me was how the peer buddies and the special education students interacted seamlessly. Ben's teacher did share one remarkable story with me. There were two students who gave up their recess time every day, all year, to come and help in the SAC classes.

There may be issues to iron out with the school, but how the students treat one another is not one of them.

Happy End-of-School and on to the Crazy Daze of Summer.

Thursday, June 7, 2012

Finding Your Calling

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 month. She asked me if I could take over and continue to teach Ben to swim. I was so honored and told her I would be more than happy to do so. Even though we were sad she was leaving and I was nervous at first, I knew I could handle the job. To this day, I am still teaching Ben to swim.

I guess I can say I found my gift after going to school for five years and working multiple jobs for
the past four years. I started thinking to myself I wanted to do more. I knew I wanted to go back to
school but unsure of what to study. As time with on I knew I had to try to work in the special needs field to see if this was the place for me. So I applied for Exceptional Children position for the Charlotte Mecklenburg Schools. August of 2011, I was offered a position at a High School as an Assistant. It was happening! I was finally setting a goal and felt like this one was the right one. I started seeing progress in children I was working with and knew I needed to learn more about children with disabilities. I did an online search on specialized majors and found what I needed. XX University offered a Masters Program in Disability studies. Wow, this was amazing feeling and I felt like now I can incorporate my Sports Management background, swim instructor experience and educational studies into opening a facility for kids with disabilities.
The main reason why I am choosing to studying Disability Studies at XXU is because I have so
much to offer these special people. I know it took me about four years to realize this dream, but it was meant for me. God knew that I had to go through obstacles and struggles to get where I am today. I am thankful for what God has done for me and he wants me to do more. Yes, it took our Aquatics coordinator leaving so that I could find out what I wanted to do with in a career. Ben is awesome and even though he does not speak to me as you, our connection is so strong that I understand when he is not feeling well, when he doesn’t want to swim and when he wants to jump in the pool. Studying at XXU will help me meet more children like Ben and accomplish my goal in opening my very own facility for kids.

Monday, June 4, 2012

3rd Annual Girls' Weekend


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.