Sunday, November 27, 2011

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.

Tuesday, October 11, 2011

Duchenne website

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

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

Friday, October 7, 2011

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)

Thursday, October 6, 2011

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.

Tuesday, August 23, 2011

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 ;)

Tuesday, June 14, 2011

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.

Tuesday, April 26, 2011

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.

Thursday, April 14, 2011

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.

Monday, February 21, 2011

Duchenne Therapy Network

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

Sunday, February 20, 2011

Make a Muscle-Make a Difference

Our family will be participating in the MDA Muscle Walk on March 26, 2011. We have also become MDA volunteers for the Shamrocks for Dystrophy program. We feel that since we have benefited from the MDA, it is a little something that we can do to give back.

  • Muscle Walk- We are raising money and awareness for MDA. The actual walk will be March 26. Me, my husband, our 6 children, and our parents will be participating together. You can see our muscle walk page here.
  • Shamrocks for Dystrophy- Have you noticed any stores or restaurants with the little green shamrocks hanging up? This is another fundraiser that helps raise money for clinic visits, the summer camp, and research. The way our family volunteers is that we go to specific stores that participate and simply thank them. We were given fun incentives that we can pass out to the cashiers and other workers. It is nice for these companies to put a face to what they are doing.
I like feeling like we are doing something to help or contribute in some way. There are so many wonderful organizations out there that benefit Muscular Dystrophy in some way, and we are thankful for all of them.