Fall is here!

Fall is my absolute favorite season.  I love the cooler weather, the colorful leaves, the crisp air, making soups and casseroles, fragrant candles, and a cozy home.  For me, it is a time to slow down and get into a routine.

Today, however, in my home state of Ohio, we are experiencing what is called Indian Summer.  Today it is almost 80 degrees.  We have a rule in our home that we can only play in the sprinkler if the outside temperature is 80.  It has been house the rule for years.

Ben was done with school early today and asked me if he could run through the sprinkler since it is sooo hot.  It was 73 when he asked.  I said no.  Pretty much because I just didn't feel like all the after-water-play-clean-up.  I told him, no, it is not 80 so no sprinkler.  Right when the words left my mouth, I realized that this could literally be the last opportunity he has to run though the sprinkler.  We are in Indian summer, the temps will drop again in the next few days and then winter will settle in.  6 months from now, the chances are high that he will not be running anymore.  How on earth could I deny him something so simple, for my own comfort or convenience? 

As I am sitting here, I am hearing laughter and the simple joys of childhood.  He is he trying his hardest and running laboriously through the sprinker; and he just informed me that he is freezing and can I please warm up the water.

Appointment Week

Next week begins a round of appointments that I am not sure if I am ready for!  Ben had been on the waiting list for pool therapy for almost a year and he was recently called to begin.  He starts next Monday.  I have met with his new therapist twice and I think this will be very good for him.  Tuesday, he has his regular physical therapy and Wednesday is his MDA clinic day.  I am always eager for those.  I like hearing that he is NOT progressing in Duchenne and I am hopeful that I will hear the same this time too.  

Thursday he has seating clinic.  He will be fitted for his new wheelchair and we will pick the model we want.  He has test driven a few of them and he want to make sure he gets a blue one!  This appointment will get it all finalized and they will write up the paperwork for the insurance companies.  I am thinking that it will be a long process before we actually get it.  He still does fine walking and when using his medical stroller.  

Now, I need to find a way to squeeze school work in all of this...
 
I will update more as next week progresses.  

Allergies?

Ben has an appointment today with his new allergist. 

A few weeks ago, after eating at Steak n Shake, we noticed his face and lips were swollen.  This is the third time it has happened.  It happens sporadically, and we cannot figure out what causes it.  His pediatrician is concerned that it could be an allergic reaction and he gave us an epi-pen just in case it happens again and he has difficulty breathing.

Actually, the last time it happened was November 28, 2009, when he was first diagnosed with MD.  I took him to the emergency room and the doctor looked at his stomach and legs to see if he had a rash.  He did not.  However, she is the one who noticed his large calf muscles.  This is the day when all the other ER doctors came into our room and we were told that they strongly felt he had Muscular Dystrophy. 

After that episode, we had allergy testing done, along with the genetic testing for DMD.  The allergy testing came back negative.  It is all very confusing.  Now that the swelling has happened again, it is getting very concerning.  We have no idea what could be causing this.  He wasn't on any medication when it happened the first 2 times.  We are praying that they are able to figure this out so that we don't have more severe problems.

Updates

I didn't realize how long it had been since I last posted until my mother-in-law said something about it the other day.  Life has just been so busy! 

Recently, Ben has been having problems with taking his medicine.  Deflazacort tastes HORRIBLE and he accidentally tasted it last week.  He has been refusing to take it since then.  Abruptly stopping this medicine can cause problems with a person's adrenal system.  Thankfully, I was able to speak with his doctor who gave me some different ideas on how to get him to swallow his pills.  Prayerfully, he will begin taking them regularly again!

Ben had an appointment today with his Orthotist.  He has outgrown his night splints and needed to be casted for new ones.  The appointment went smoothly and we should be able to pick them up in a few weeks. 

We had a blessing in the waiting room  before we were called back.  An older gentleman was sitting down waiting for his friend to be done with his appointment.  He struck up a conversation with me about houses, as there was a show on HGTV in the waiting area.  He is a retired realtor and talked about houses he has sold and people he has helped.  I told him we were thinking about either remodeling our home to make it wheelchair accessible or moving to a larger home to do the same.  He asked who the wheelchair was for and I pointed to Ben.  He looked surprised and asked me what was wrong.  I explained that he had Muscular Dystrophy.  He asked me to write a number down.  I thought maybe he was giving me a number of a place to help with remodeling or something.  It was actually HIS phone number and address.  He told me to have my husband call him because he wanted to give us a power wheelchair that he no longer uses.  He said we need to get a battery but that's it.  A great blessing!  Ben has seating clinic in September to be fitted for a power chair but he will not get it for a while.  This chair that the man told me about would be a great in-between.

My husband and I were able to attend a Duchenne conference at Nationwide Children's Hospital in April.  It was very informative!  And overwhelming.  And inspiring.  We met a lot of families and it was very encouraging to meet some of the older boys who are now going to college and basically 'getting on with life'.  I am very thankful for this conference and am looking forward to the next one.

We have been doing a lot of swimming this summer, which is not just fun, but therapeutic for Ben too.  I have been noticing him start to waddle occasionally.  That concerns me.  I mean, I know it is coming that he will lose his ability to walk, but I guess I didn't think about it being any time soon.

I still say, God is good....all the time. 

 

Just for fun :)

Fundraising

As many of you know, we try to participate in some type of fundraising, advocacy, promotion, or bringing some type of awareness to Duchenne. This is the time of year that the shamrocks are appearing in stores and restaurants. Also, it is the time of year for the MDA Muscle Walk!

A friend of mine sells Tupperware and shared with me that they do FUN'raising. They will donate 40% of the proceeds in their Fun'raising booklet to the charity of my choice.

So, if you want some great Tupperware, and want to support a great cause, check out my link here.

http://order.tupperware.com/pls/htprod_www/!twx$eparty_ctl.p_guest_welcome?pv_eparty=6137d11bd4f7882195a25263ebd547b9

"8" is the Magic Age

My baby boy turned 8 last week! Bittersweet.

When we were diagnosed, we were told that 8 is the year that DMD boys begin to decline. Their muscles are not growing anymore, giving the appearance that the DMD might not be as bad as we were told. The ages of 6-7 are considered the honeymoon years, muscles are still growing and it really looks like they may be getting better. I have secretly thought that Ben may have Becker's MD, and not Duchenne. I know that it is wishful thinking. For those who don't know, Becker's Muscular Dystrophy is on the same gene, but is not as severe. Those with Becker MD live well into their mid to late adulthood.

There is some good news though. When we were diagnosed a little over 2 years ago, we were told that survival rate is in the late teens. As of today, that has increased to mid-to late 20's. Progress is being made, and I am thankful but I want more. I want a cure. I pray that it is found in time. So many boys have died waiting for better treatments and a cure to be found and my heart goes out to their families. It is heartbreaking every time I hear of another boy/young man who has lost the battle.

But I am living for today, enjoying our time and keeping those thoughts on the back burner and not the forefront of my mind. I don't want to have any regrets of worry or fear. I am still trusting God. I know that nothing will happen that He doesn't already know about and have complete faith that no matter what happens, God is in control.

Psalm 147: 3 He healeth the broken in heart, and bindeth up their wounds.

Psalm 147:5 Great is our Lord, and of great power: his understanding is infinite.

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

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 :)