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 :)

Two Years ago...

Two years ago today, we received the devastating news that our 5 year old son may have Duchenne Muscular Dystrophy. What a shock! You can read about it here. Two years have flown by at break-neck speed! At times, it seems like our son is simply getting better, but inside, we know that he is not. Duchenne is progressive and there is no positive outcome.

Over the last 2 years, I have met many new DMD friends via facebook. I am so thankful to know that there are others that truly share and understand our burdens. They go through many of the same feelings and emotions, have the same fears and doubts. I have met moms with newly diagnosed sons. I have encouraged moms on how to teach their sons how to take a pill. I have read of the struggles of spinal rod fusion surgeries, horrible school situations, picking out a new wheelchair, figuring out insurance and/or medicaid.

I have witnessed heated debates regarding the usage of steroids and the STS/Vecttor treatment. I have cried when another young man or boy has lost their battle with Duchenne. I have tried to offer words of encouragement to hurting families. I pray for those whom I consider my DMD family.

Not too long after our official diagnosis, I spoke with my great-grandmother on the phone. She knows and understands Duchenne due to the fact that in her younger years, she was a caretaker of a young Duchenne boy. She is a sweet Christian lady whom I admire. She told me something that has stuck with me over these last 2 years. Here is what she said, "You have probably asked God, why me? Well, why NOT you?" Not one of us are promised a life without trials or tribulations. As a born-again Christian, I firmly believe that the Lord allows trials in our lives to perfect us, or to mature us. He allows these in our lives perhaps for us to be able to minister to others who have similar needs. James 1:2-4 My brethren, count it all joy when ye fall into divers temptations;Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.

One day, all of us will die. As much as we want to avoid the topic, we all have an appointment with death. There is simply no way to escape it. It would be wise for one to think about it and consider what the Bible says about it. Hebrews 9:27 And as it is appointed unto men once to die, but after this the judgment: One day we will all stand before God to give an account of our life. Considering the fact that all of us are born sinners, this is bad news. Thankfully, God offered a way for us to escape this judgment. He sent His Son, Jesus Christ to die in our place as the ultimate Sacrifice for our sins. All we need to do is simply repent (turn away from our sin) and accept this gift that God has given us. If we accept this gift, God will not see us on judgment day, but He will see His Son because He is standing in our place. This is the gift of salvation.

I felt provoked to once again share my faith in the Lord. Time is too short. I have the assurance from the Bible that one day, I will be in heaven when I die. 1 John 5:13 These things have I written unto you that believe on the name of the Son of God; that ye may know that ye have eternal life, and that ye may believe on the name of the Son of God. When Ben has the understanding that he too is a sinner, he will have the opportunity to be born again. What a blessing to know that this life is not the end of it all, we will one day be in heaven and see our loved ones again, all the while worshiping our Lord.

The diagnosis of Duchenne has changed my perspective on life a little. I no longer ignorantly think that life is generally a bed of roses nor do I take time with my family for granted. Time is simply too short. I am even MORE thankful for my salvation. It gives me joy unspeakable and holds me up when I feel like falling into the despair of a devastating, horrid disease.

Thank you Lord.

Duchenne website

Here is a website that I recently discovered that has a lot of information regarding Duchenne.

Check it out! http://duchenneinfo.com/

Protandim

There is a supplement that I have heard about off and on since we started our DMD journey. It is called Protandim. From what I understand (which isn't much), Protandim is a supplement that you can take alongside the other vitamins and supplements we already take. It is supposed to reduce oxidative stress or neutralize the free-radicals that our bodies produce every day.

From www.Protandim.com:

Protandim provides you with thousands of times more antioxidant power than any food or conventional supplement.* In fact, you would need to consume the antioxidants found in 375 oranges or 87 glasses of red wine or about 120 vitamin C tablets (500mg) a day to neutralize the amount of free radicals your body produces every single day.

Antioxidants are something we should be consuming anyway, they are found in berries, beans and some other foods that are good for us. We cannot consume enough of these foods to get the same benefits as Protandim.

I have heard several testimonies regarding Protandim and Duchenne Muscular Dystrophy. If it can't hurt, and will possibly help, I am DEFINITELY going to give it a try. I ordered a one month supply and will be journaling what I observe in Ben's abilities.

His current abilities:

1. He can walk, but gets tired;
   
2. he can run, more of a waddle run
3. gets sleepy in the early evenings and will sometimes take a nap
4. scoots down the steps of our home
5. walks up our steps on all four's
6. walks up the 2 steps outside into our house holding his thigh

Just a few observations. Our shipment should be here next Tuesday, so his first dose will be Wednesday (clinic day!)
I am eager to get Dr. Flanigan's thoughts on this.

And just for fun...(and because he is so cute)

CaringBridge

We have a CaringBridge page now. Will try to post updates more regularly both here and there too. We have clinic next week and will have an update for sure then. Right now things are the same, only noticing very small changes like scooting down the steps and his hands are beginning to 'claw'. At Occupational Therapy last week, Miss Francis suggested stretching his hands to prevent problems with this. She also said that maybe we could do more of his schoolwork on the computer instead of his workbooks. All in all, he is doing well :)

You can check out his CaringBridge page here.

Library Books

I received my order of books a few weeks ago. I have read some of it but I am just taking my time. I don't want to get overwhelmed with emotions that sometimes feel just below the surface.

These books are just what is needed, whether you've been recently diagnosed or have been living the DMD life for many years. When we were first diagnosed, the first place I looked for information was the internet. Secondly, I checked our local library. The Columbus Metropolitan Library is #1 in the nation and I was sure that I would find a wealth of information there. Wrong. I was surprised that there were not many books on Muscular Dystrophy, let alone Duchenne Muscular Dystrophy. The books that I did check out were a couple of years old, and while I didn't know it then, I now know that a couple of years in the DMD world is a very long time! Research is progressing rapidly, and prayerfully it will be in time to help my son.

When I was asked to participate in this book, I jumped at the chance! Little did I know that it would turn out to be so much more. There are more than 30 parent that made the decision to share their story for the world to see. One of the goals is to educate the world about Duchenne. Now that I have it here in print, I am surprised at how similar our stories are. Many of us experienced the same emotions and feelings, had the same questions in knowing that something was wrong with our son but had no idea what, and I also share my reliance on the Lord for whatever may be in our future.

Tonight, I decided it was time to take 2 of my copies to the library to donate them. I do know that sometimes when books or media is donated, they decided not to shelve it, but donate it to the Friends of the Library program to be sold.

I walked in with my oldest daughter, Kayleigh, and my youngest son, Ben (my son with DMD). Ben and I dropped off our books that were due and Kayleigh and Ben went to pick up our reserves. After I returned our books, I walked to the main librarians' desk to ask how to go about donating books. I explained that I had 2 copies of a book that I wanted to donate, to go into circulation, not sold off. She said that it was the decision of the Main branch and that there are no guarantees; once I give them, I relinquish all rights as to them being shelved or sold. She said that if there were other copies within the Ohio library system, that could help their decision.

I explained that it just came out and it was a self-published book. I proceeded to tell her what it was about; a group of parents with children with Muscular Dystrophy got together to share their story. I shared with her that when we were diagnosed, there wasn't any type of book like this and that it could be a help to someone. She looked it over and told me that her sister had MD! We had ourselves a nice chat. Her sister never had a genetic diagnosis of MD but had a very complicated birth. The umbilical cord was wrapped around her neck and no c-section was performed. The doctors broke both of her legs and one of her arms by the use of forceps during the birthing process. This caused a neurological disorder and was classified as a 'dystrophy' in which the MDA stepped in to help the family. This librarians' sister was on several of the telethons and eventually died at the age of 19 because her lungs did not function well enough to keep her alive.

Wow!

This is what she told me, 'because MD is so near and dear to my heart, I will do everything I can to get these on the shelf'. She also said she was bending the rules and would call me either way- if they shelve them or let them go. She also said that she would get them back for me if they decide no. Another wow! She had me write my name and number down and when she saw my last name, she asked me if I was Kayleigh's mom haha. (She volunteered there this summer).

I am confident they will get out there for people in the Central Ohio area to read. I will keep you posted! Oh, and if you want to order your own copy, just click here ;)

I Know Who Holds Tomorrow

Last week, we went to a friends house for a family game of baseball. We didn't really go by the rules. We let everyone bat until they hit a ball, didn't call fouls-if they hit it, they ran, went through the batting line up once and switched sides. With the mix of ages between our 6 children and their 4, it was the best way to go for a fun, friendly game.

Whenever it was Ben's turn to bat, whoever was pitching made sure to get close so he could hit the ball. As he ran the bases, you could just see the sheer determination in his face as he pushed his legs to go faster and faster. Part of me wanted to tell him to slow down some or take a little break. The other part of me said, just let him enjoy himself, he is having so much fun. I decided to just let it go.

I have noticed in the days following, that he has been a little more tired and having pains in his feet. He fell at the grocery store yesterday. I always question myself, wondering if I made the right choice; even the little ones. Should I have stopped him?

Imagine how he and other DMD boys feel. His mind is so concentrated on making his body do something that it struggles so hard to do. Imagine feeling like you can go faster, stronger, higher, only to have your legs produce a fast walk instead of the sprint your mind is determined to make. Imagine running with 50lb weights inside your shoes. Imagine a gallon of milk being too heavy to carry.

Living for the moment is my motto. I didn't used to be like this and I sometimes feel pulled into different directions. As a Christian, I believe that nothing happens by accident. I want to live in the moment, yet I want to see the bigger picture of it all. I know that our lives are only just a vapour. If you think about it, in light of eternity, we are only on this earth for a speck of time. Eternity is what truly counts. James 4:14 Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away.

I want my son to enjoy life. I also don't want anything holding him back from what the Lord has for him. I want our time, mine and my whole family, count for something. Only the Lord knows all the intricate details for our future. I am continuing to place my trust in Him and have faith that He holds tomorrow in His hands.

New book!

What is Duchenne? Why haven't I heard of it before? This is a new book collaborative to educate the world about Duchenne Muscular Dystrophy. 33 parents have come together to share their stories....I am one of them.

MDA Muscle Walk

We participated in the MDA Muscle Walk this year and raised almost $600! THANK YOU to those who donated, not to just our team, but to MDA! Here are a few photos...

Positive news :)

We had clinic last Wednesday at Nationwide Children's Hospital here in Columbus. We were supposed to see the cardiologist but he was having his own surgery so we saw a nurse practitioner instead. Because of his regular cardiologist not being there, we had a long wait and actually wound up being several hours late for his clinic appointment.

Ben had an EKG and an echocardiogram. DMD boys typically have these tests done yearly unless complications begin. Both of these tests showed that his heart looks exactly the same as last year, praise the Lord! We were told that his ejection fraction is 65%. I had no idea what this meant so I asked what normal is. She told me that anything above 50-55% IS GOOD. His is 65%. Good news :)

His cardio appointment was at 9:30 and clinic was at 10:30. Because of our wait, we didn't make it upstairs for clinic until 12:15. We saw Dr. Flanigan, his neurologist, that we see for every clinic appointment. After the muscle strength tests, he stated that Ben appears to actually be a little stronger than last time. This is NOT the norm. He did state that at the ages of 6-7 (the honeymoon years), the muscles are continuing to grow (and then weaken). He attributed his strength to this period of growth. He stated again that he felt that Ben was on the 'higher end of the spectrum' concerning the Duchenne.

After we saw Dr. Flanigan, a physical therapist came and got Ben to do a few tests with him. He is in a clinical study where they measure his strength, they see how long it takes him to get off the floor, and a timed running test. I was not allowed to go with his to this portion of the visit. He is actually in several clinical studies. I feel that it is a benefit for him and others like him, now and future, to further study the complications of this disease.

A few weeks ago, the seating clinic called me to schedule an appointment. Seating clinic is where you take your child and have them fitted for a wheelchair. I wasn't real surprised, as Ben's physical therapist told me that they would be calling. She had actually made the recommendation. When I shared this with Dr. Flanigan, he said nope, he doesn't need that yet, it is way too soon! Of course, I knew that it was too soon for a wheelchair-he still walks fine. He does get tired on longer outings though. Anyway, I have decided to cancel this appointment for the time being.

All in all, it was a very positive visit. We will go back in 6 months. God is good :)

Passing the time while waiting for cardiology.

Duchenne Therapy Network

Here is a link with info from a physical therapist regarding DMD.