Friday, January 27, 2012

MDA MuscleWalk 2012

It's that time of year again! The MDA MuscleWalk! Our family will be walking and raising money to support the MDA. They have been a huge benefit to us since we were diagnosed a little over 2 years ago.

Please consider a donation today, in honor of Benjamin.


http://www.youtube.com/watch?v=BhF7rY16FD8&feature=youtu.be

Thursday, January 26, 2012

Updating

I just realized that I have not posted any updates for a while. Yeah, we've been BUSY.

Ben is close to getting his braces off of his bottom teeth. The orthodontist removed the ones from the top in early December. He should be brace-free in the next 3 weeks or so.

We have removed one of our van seats to accomodate keeping the medical stroller open and ready to use at all times. It has been so much easier than fighting to open and close it each time we use it. It has helped him out tremendously by allowing him to preserve his strength for the fun stuff.

There were some difficult times in December, after getting his Deflazacort from a different manufacturer. Normally, we order his medicine from the U.K. from a company that many Duchenne families use. Someone brought to my attention in November that a company in Canada was having a great deal on various prescriptions for new customers. The 'Black Friday' special meant that we could get a 3 month supply for the cost of shipping. I decided to try it. When it came in the mail, I discovered that I ordered it from Canada, it was made in India, and they shipped it from Barbados?! I knew others family had been long-time users of it so I thought it was fine.

About a week after giving him the new drug (well, same drug, different maker), we experienced what they call 'roid rage. Whew! Angry outbursts, crying, definance, throwing himself down, it was awful. It was so tempting to just take him off drugs altogether. After about 5 or 6 days, he began to level off and is back to himself. Thankfully.

The usage of steroids are controversial amongst Duchenne families. It's a shame that there are not more options out there. Steroids help preserve muscle strength but they also take the Calcium out of the bones. They help, but there are side effects. I make sure that he gets plenty of Calcium supplements and other vitamins to keep him healthy.

He has clinic again in a few weeks. He will be seeing the Cardiologist this time for another echo and EKG. He will also see the eye doctor and the dentist that week too. Busy, busy times.

I will try to be more faithful in updating in the future!

Today's blessing

Back in October, at our regular clinic visit, I asked about Ben getting swim/aqua therapy. Our doctor wrote the prescription and we got put on the waiting list here at Nationwide Children's Hospital. A TWO YEAR waiting list. While I was excited, I knew that he needed to be in a pool now to get the benefits of the water.

I decided to join the local YMCA. I figured we could at lease do something while we waited. Our physical therapist gave me a few ideas to get started. Simple things like walking side to side in the water are a huge benefit.

Today was our second visit. I had 5 of the kids with me to explore the fun of swimming. See, none of my kids have had swimming lessons. Ever. They have been swimming a few times, but are not very comfortable in the water and I want to change that. I grew up in a pool!

When we arrived, we scanned our cards and then I hear someone call my name. I looked and she seemed vaguely familiar. I then I remembered! She was someone who was in my homeschool group a few years ago. We got to talking and catching up while the kids got changed into their swim clothes. I told her about Ben's diagnosis and one of the reasons we were at the Y. She informed me that she is a certified swimming instructor there and that she would be happy to give my kids private lessons every week! I am soooo excited! HUGE blessing :)