Disability Placard

We got Ben's disability placard today. I had never really thought about it until reading some comments on my Duchenne Muscular Dystrophy MOMS page on facebook. Even though he is not in a wheelchair yet, he does get tired with a lot of walking. It isn't too bad just going to the grocery store; we usually just get one of the car carts and he is fine. I don't plan on using it at the grocery store for that reason, because we don't need it there yet. For now, I just plan on using it when there is a large parking lot and no carts nearby.

I really got to thinking about it because my husband is on vacation from work this week. We have plans on going to several places that require a lot of walking. I saw that someone mentioned, "why waste all his energy in the parking lot?" Good question. I asked our doctor at clinic and he said something like that was up to me for when I felt we were ready for it. He wrote the prescription for it and I took it to the BMV today.

I guess the next step is actually using it.

A very informative video on Duchenne!

AWESOME Time at Clinic!

Ben getting bored waiting. I think he was rolling his eyes at me!

We had great day at clinic today! We met our new neurologist, Dr. Flanigan, and we just love him! We learned new things and had an encouraging appointment.

Our clinic involved seeing the genetic counselor. I let him know that I had received my results of my own DNA test and that it indicated that I am not a carrier. He was pleased to hear this-it significantly lowers the chance of my daughters being carriers.

Next, the neurologist, study coordinator, PT, and several others (I don't know who they were) came in. Ben got a little nervous when the room suddenly got crowded, but Dr. Flanigan totally made him feel at ease. He listened to his heart and lungs and then checked his back (I think for signs of scoliosis-a common problem in DMD kids). Then he let Ben listen to his own heart :o) He enjoyed that part!

His favorite part was getting to run down the hall to check his ability and speed. He ran pretty fast! The doctor then asked me if he had a muscle biopsy. He has not had one of those since he had the DNA test to confirm Duchenne. The doctor was pleased with his running.

There are several ways that they test muscle strength. One is the running. Another is having them lay flat on their back and then lifting up their head to touch their chin to the chest. He did this very well! Dr. Flanigan told me that he is doing better than most 6 year old DMD kids! That was music to my ears!

I had all my questions answered too. I took in my list and went through them one by one. He also explained, along with the PT, how to do his stretches better. We will be getting night splints soon too. Then he said something that was VERY exciting! He made the comment that we need to keep Ben walking because there will be an exon skipping trial in the near future-that will help Ben! Very exciting indeed!

The Lord is so faithful :o)

Clinic Time!

We have another clinic appointment coming up on Wednesday. I'm excited about it (sort of) because I have a better grasp of what we are dealing with and know how to direct my questions. We will be seeing a new doctor, as our neurologist has moved away. I am eager to see who it will be. From the ones that I have met so far, I would be happy with any of them. They are doing tremendous work at Nationwide Children's Hospital in the area of Duchenne Muscular Dystrophy!

Our current medicines & supplements include:

• Deflazacort (steroids)
• flax seed oil (in the capsules)
• multi-vitamin with extra vitamin C
• Calcium chews (600 mg)
• Vitamin D-helps the Calcium absorb better
• Vitamin E
• Selenium-helps the Vit E
• Vitamin C-just added this one last week

I still have much to learn! Ben is doing pretty good right now. We are living normally, just making adjustments as we go. We recently got a wagon for him for when we are places that require a lot of walking. I am also going to be applying for a disability placard for our van after his clinic appointment this week. Since children who have DMD get tired so easily, why waste all their energy in the parking lot and not the intended place??

We took a trip to COSI this past week. It is a hand's on-science museum. They had Big Machine's week and the boys had a blast! Living it up :o)