Boy Blessings

"8" is the Magic Age

2012-02-07T15:54:00.000-08:00

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

2012-01-27T15:13:00.000-08:00

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

2012-01-26T19:58:00.000-08:00

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

2012-01-26T19:39:00.000-08:00

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...

2011-11-27T17:13:00.000-08:00

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

2011-10-11T06:49:00.001-07:00

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

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

Protandim

2011-10-07T11:19:00.000-07:00

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:

He can walk, but gets tired;
he can run, more of a waddle run
gets sleepy in the early evenings and will sometimes take a nap
scoots down the steps of our home
walks up our steps on all four's
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

2011-10-06T11:57:00.001-07:00

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

2011-08-23T17:21:00.000-07:00

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

2011-06-14T06:59:00.000-07:00

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!

2011-04-26T07:42:00.000-07:00

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

2011-04-14T12:38:00.000-07:00

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 :)

2011-04-14T11:53:00.000-07:00

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

2011-02-21T12:06:00.000-08:00

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

Make a Muscle-Make a Difference

2011-02-20T19:45:00.000-08:00

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.

New Clinical Trial

2010-11-10T09:20:00.000-08:00

A representative of Kennedy Krieger Institute has recently informed me of a new clinical trial for boys with Duchenne Muscular Dystrophy. They are checking to see if the drug Revatio (same drug that is in Viagra) would be beneficial as a cardiac drug for DMD patients. They are still recruiting for this trial. They plan to have 30 boys, ages 15 or older, who have been diagnosed with DMD. For more information, or to see if your son qualifies, click here.

I have recently read about the potential benefit of this drug in boys with DMD in a Quest article. I am so thankful for so many researchers trying to help these boys!

About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school‐based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.

Priceless...

2010-11-07T08:26:00.000-08:00

My sister made this for me....I love it :o)

Reflecting and Other Stuff

2010-11-05T16:12:00.000-07:00

I don't know why, but I have been reflecting on Duchenne more lately. Maybe it is because we are coming up on the first anniversary of our diagnosis. Perhaps it is just a time of year where life slows down a little and there is more time to think. Thinking about it too much is rather depressing. Pondering the future and what it may hold for our son and our family is a frightening thing for me.

I have also been reading about other DMD boys and young men on my facebook page. It is just so sad for these boys to have to go through this. Sometimes, if I read too much, it puts me in a melancholy kind of mood.

Benjamin has not started the increased steroids yet. I wonder if this may be why he is walking a little different. Things have settled down into more of a routine this week, so I don't believe that it is due to fatigue. Not that I think about it, he has been sleeping in quite a bit. He stays up late (midnight) and gets up about 9:30am.

I forgot to mention that in mid-October, he showed me a large, black bump on his gums, right above one of his baby teeth. I thought it looked like an asbcess and called the dentist. They got us in later that afternoon. Sure enough, it was an abscess. On the drive to the dentist, it had popped (ewww!). They took an x-ray and thought they saw something odd, so they took another. Sure enough, the strange thing they were seeing on the x-ray was part missing root to his baby tooth. They called it "internal resorption". Apparently, the root reabsorbed into his gum and caused the infection. The scary thing is: Ben said it didn't hurt!! It looked horrible!

The dentist decided to pull the tooth, but then was unable to get the remaining part of the root. She tried and tried and then Ben lost it. He was crying so loud. Even though he was numb, he could still feel the pressure of them digging in the gum for it. She finally stopped and said that now that the tooth was out, the infection could drain naturally and the root would eventually work its way down. We go back to check on it next week.

I wonder if the steroids (which cause bone loss) may have caused it. They said no, but I am not sure. He now has another baby tooth that is loose and has the grown-up tooth growing in behind it. I am going to wait until our appointment and have them pull it while we are there.

I am so thankful that I know the Lord Jesus Christ. I truly find my comfort in Him. I know that He holds our future in His hands and I am so grateful for His grace.

November already?!

2010-11-01T07:31:00.000-07:00

I cannot believe it has been almost a whole year since we have found out about Ben having DMD! Actually, November 28th to be exact. In some ways it still seems so new and that we still have so much to learn. I have gone in spurts in my research over this last year. Right now, I am in the middle of taking a "research break". We've been too busy with other things recently.

This last week, our church had revival. Being the pastor's family, this was a time consuming week! But, oh so wonderful!! We had a great time! I did notice that Ben fell more this week and I wonder if it is because he was tired. We stayed up late, and were busy almost all day, every day. He fell a few times each day :o(

At our last clinic appointment, Dr. Flanigan said that he wanted to increase his steroids from 15 mg per day to 18 mg. He also said to use up what we have and then start it. We still have about 3 weeks' worth left. This increase should alleviate him falling so much again.

Other than the falling this last week, he is pretty much the same. I did notice that he scooted down the stairs a few times instead of walking down them. He has not been real consistent in wearing his night splints. They just don't seem to fit right. Dr. Flanigan said if it continues to be a problem, he will need to be fitted with a different kind, and the new ones would not be adjustable.

That's it for now.

Clinic October 2010

2010-10-06T09:56:00.000-07:00

We had another good visit with Dr. Flanigan today. There is encouraging news coming with these exon skipping trials. Currently they are doing a trial skipping exon 51. (They are still enrolling for this! For more information, click here). So far, so good. If exon 51 goes well and is tolerated, then they will move to exon 44, and after that exon 45 (the one that Ben could benefit from).

He does want Ben to have another echocardiogram. He didn't say why but it looks like we will do that in the near future. His steroid dosage will be upped from 15 to 18mg. Overall, he said that Ben appears to be a less severe DMD boy. That is VERY good news to me. :o)

Here is another link to Dr. Flanigan's podcast. It features authors of publications of recent studies.

Update

2010-10-04T18:11:00.000-07:00

It is hard to believe that it has been one month since I last posted! We have been B.U.S.Y.!

We were supposed to have clinic at the end of September but we were rescheduled. We will be going this week on the 6th. Again, I am excited and nervous at the same time. Excited because our last clinic went so well and nervous, well, just the whole nature of this disease. I still have many questions.

My most recent question is this: Can a boy (or in the rare cases of girls) be diagnosed with Duchenne, and have it progress more along the Becker's line? Becker's Muscular Dystrophy is less severe than Duchenne. From the research that I have done, it is on the same gene but to know for sure if it is one or the other, we would have to have a muscle biopsy. I don't know that I want to put Ben through this unless there was reason to. At our appointment in June, Dr. Flanigan seemed very pleased with Ben and how well he is doing. To quote him, "Ben is doing better than most 6 year olds with this disease". He also said to another doctor in the room something about Becker's. I know it may be wishful thinking, but I don't care. I am going to ask this week if there is a possibility.

Last week, I received a copy of the report that was sent to the pediatrician from our June clinic. It seemed positive overall. I wasn't sure what some of the numbers meant so I asked my DMD moms facebook page. They also said it was a positive report and that it appeared that he is doing good. Very exciting news to me :o)

He is doing so much more since he has been taking the Deflazacort! He has now been on it for 9 months. We do see mood swings, but they are not unbearable. He has not gained much weight. We are making sure that he takes his calcium and Vitamin D (among other supplements) every day. We want to keep him as healthy as we can!

Our family will be getting the flu shot for the very first time ever this year. I got mine this morning (because I was already at the doctor and it was offered) and Ben will get his this week too. The rest of the family will be in the next week or two. It was highly recommended to us that the whole family get this shot. The kids are not excited about it ;o)

That's it for now. I will likely update again after Wednesday's clinic.

MDA Telethon

2010-09-04T08:02:00.000-07:00

This weekend is the annual Jerry Lewis MDA telethon. I remember collecting money in a can when I was little. I honestly never thought about it in my adult life-until it hit home.

I know I will be watching this year. Check out your local TV station and if you are able, make a donation. It supports all kinds of Muscular Dystrophy. Duchenne is what my son has.

We have a clinic appointment coming up at the end of the month. The MDA pays for these clinics! It is a wonderful help to folks dealing with this devastating disease.

WSYX ABC6 On Your Side Top Story - Don't Miss ABC6's MDA Telethon on Monday

2010-09-04T05:22:00.000-07:00

WSYX ABC6 On Your Side Top Story - Don't Miss ABC6's MDA Telethon on Monday

It's time for the Labor Day MDA Telethon! Be sure to watch and donate if you can!

Be A Star: Laura LaPat

2010-08-04T08:13:00.000-07:00

Be A Star: Laura LaPat

MDA Telethon-Be a Star!

2010-08-04T08:04:00.000-07:00

We have signed up to help with the fundraising effort for the MDA. We are huge benefactors of this organization and we want to try to give back a little. The MDA pays for all of Ben's clinic visits, and also provides funds for equipment repair, summer camp, and research.

If you are interested in donating to the MDA for the Labor Day Telethon, just click the link!

My Comfy Spot

2010-07-16T10:43:00.000-07:00

I have been sitting in a comfy spot recently. This comfy spot consists of pretending nothing is wrong with my son. It is so easy to do. It's comfortable. Knowing that he has a fatal disease is always in the back of my mind somewhere but I am not dwelling on it right now. Right now, we are living it up and enjoying life! Plus, the simple fact that I have 6 children keeps me busy enough to not have to think about it all the time.

Today, I made appointments for all my kids' yearly check-ups. I usually try to schedule them 2 at a time so I only have to go 3 times instead of 6; it's just easier that way! This time however, I requested that Ben be seen by himself. I have a lot of questions for our pediatrician that I need to have answered. One of them being, why haven't we heard from him in the 7 months since our diagnosis. I mean, if I was a doctor and had a family that I have been seeing for 15+ years, I think I would call or something after learning one of them has been diagnosed with a life-threatening disease. But I guess that's just me. I am no doctor, just a mom. I was grateful that Ben is also 1st out of my 6 to be seen. This way, I can get it all out in the open before all the other children are seen.

Ben will also go back to the place where we have ordered his night splints in a few weeks. They have been ordered and we will go in for another fitting. We will then begin wearing them each night, all night, to keep his heel cords stretched. This will prevent the need for surgery and will also keep him walking longer.

I made the mistake this morning of reading a thread on facebook from another DMD mom. I have been in my comfy spot for about 2 months, all the while still researching and reading everything I can on DMD. This morning, however, I read someones' status about remembering the life of a loved one, and not their death. Then I read the comments. Bad idea :o( These folks have all lost sons to DMD, and some of them were young. I felt myself slipping away from the comfy spot.

But, I like it there too much and I think I'll just stay for a while.

Got my book!

2010-07-12T16:48:00.000-07:00

I got my book today! I am very excited to read it (maybe a little nervous too). This book was written by a fellow DMD mom, Misty VanderWeele, whose son Luke is 18. You can get a closer look at the book on my sidebar. Thanks Misty, for shedding some light into your life as a DMD mom. :o)

Disability Placard

2010-06-25T17:57:00.000-07:00

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!

2010-06-24T16:41:00.001-07:00

AWESOME Time at Clinic!

2010-06-23T16:59:00.000-07:00

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!

2010-06-20T20:54:00.000-07:00

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)

MDA Stride & Ride PICS

2010-05-23T17:44:00.001-07:00

Yesterday was hard. I thought I would be fine and I guess i didn't really think about it too much. We got there and were told where to go for registration. That part was okay, it took a few minutes registering all the kids. We then walked over to our team's table to get our shirts and badges. Then I actually looked around.

Wham!

Reality set in AGAIN. My son has Duchenne Muscular Dystrophy. Wow. My son will experience the same things as these boys. Power wheelchairs. Not regular wheelchairs...power ones. Their arms aren't strong enough to get them around. The heartbreaking thing I saw was the team that was walking in honor of their loved one who died.

While it was tough, I am so glad I went. I saw a group of people come together for a purpose. That purpose is to help these boys (and girls) by raising awareness and raising funds for research. Out of the 120ish people that were there, more than $12,000 was raised and contributed to the MDA.

God's grace is sufficient. I am trusting in Him. I know that He will not fail me. In whatever may come, He will still be God and he will guide us through this journey.

MDA Stride & Ride

2010-05-20T20:56:00.000-07:00

Getting ready to leave for guitar class

This weekend, we will be participating in our first MDA event. It is the Stride & Ride and it is a fundraiser/awareness-raiser for the many different forms of Muscular Dystrophy. I am looking forward to it for several reasons. One, we will see a family that we have known for a little while and it is nice catching up. Two, we will meet many other families who are dealing with the same issues as we are, and they will be local families. I have really enjoyed getting to "meet" other DMD moms via Facebook but it is also nice to meet people in person too.

Right now, I am in one of the "up" moments with DMD. The ups and downs keep coming and going. Since the beginning of April, our family has been insanely busy, thus the reason for my lack of posts. I will try better to keep current! There really hasn't been a whole lot to report though, which I suppose is a good thing. He is running, peddling, learning to play the guitar, doing his schoolwork, just like a normal 6 year old boy. Sometimes it is easy to forget that he has it. I like forgetting. I am not looking forward to the day that it is in my face (as Misty would say!!) all the time. I am not in denial, just enjoying our time.

During our Mission's Conference, we had one of our missionary families at our house and the wife, who is now my friend :o) wisely told me that his abilities aren't going to all of a sudden stop, they will be gradually slowing and we should be preparing for that in regards to our home and making it wheelchair friendly. Wow, that hit me like a ton of bricks. But she's right. That's exactly what will happen. He won't go from completely walking to completely needing a wheelchair to get around. He will gradually have to use a wheelchair more and more, so we need to prepare for when the gradual need arises. Does that make sense? I am probably rambling...it is late, but it makes sense to me.

I will absolutely post pics of the Stride and Ride event this weekend! Hope you all have a great weekend ;o)

Busyness

2010-04-02T07:14:00.000-07:00

We are having such a busy time right now. Spring seems to be a time of not only the earth waking up, but us too. We will be attending several church meetings this month and also hosting our own. We are having our first Mission's Conference at the church my husband pastors, Old Paths Baptist Church. Our vacation is coming up too. Whew! Makes me tired thinking about it!

In all actuality, I am glad for the busyness. It helps me to put other things out of my mind for a little while. Since Ben is still young and not in need of devices or aids yet, such as a wheelchair, vent, etc, it is easy to forget sometimes that he has MD. In fact, in the 2 1/2 months that he has been on Deflazacort, he has been able to peddle a tricycle, RUN (pretty fast!), not fall as much, and in general he is just doing better all around. So, you see, right now it is somewhat easy to forget. I like not having to think about it. When I sit and truly ponder the future and what it holds for Ben, I get sad, scared, and weepy. It is not good for me or my family.

As for our vacation, we are going to a homeschool conference in Tennessee. It is set up like a ranch/cowboy town. The kids are so excited! (we are too ;o) ) It will be nice to get away for a time and just regroup as a family, while meeting other families too.

Today, we are going to my brother-in-law's house and celebrating my oldest daughters' birthday. She turned 16 this week...where has the time gone? A day of fun for everyone!

I think I'll keep the busyness for now.

The Jett Foundation

2010-03-24T10:04:00.000-07:00

Here is a website that has been created to raise awareness and funds for Duchenne Muscular Dystrophy.

www.jettfoundation.org

Also, a video they put out that really puts real-life perspective on this horrid disease.

Peddling ;o)

2010-03-20T18:20:00.000-07:00

My son rode a tricycle for the first time today!

He has never been able to peddle and since our DMD diagnosis, I never thought he could. He sure proved me wrong today when he spied a friends tricycle and got on. It was a blessing to see!

Animated Video about DMD

2010-03-03T06:01:00.000-08:00

I found this video on a facebook page, dedicated to DMD research.

Recent News Articles

2010-03-02T13:15:00.000-08:00

There are two recent news articles that seem to me to be very promising in the area of research for different forms of Muscular Dystrophy. I am excited about these because it means there could be a cure for my son in the near future.

I have to say that the Lord has been so good to me. When we first got the news of a possible diagnosis for Duchenne, I was absolutely crushed! I mean, who wouldn't be?! It is a horrible disease that robs these precious boys from having a 'normal' life, a life that includes growing up, walking properly, running, climbing trees, doing stuff that boys do! It robs them of a chance to grow up, get married, have children of their own. When the news came, I could literally see our life flash before me and wondered if he will be at all his siblings weddings, be an uncle to his future nieces and nephews, be a married man, a father, a preacher like his daddy, a missionary...

The Lord picked me up and let me know that nothing happened by an accident. He let me know that He will be with me every step of the way.

Me & Ben :o)

2010-03-01T20:06:00.001-08:00

Just wanted to share :o)

Home!

2010-02-24T15:13:00.000-08:00

We had our first MDA clinic yesterday. It was VERY informative! I had my long list of questions, patiently answered by the many doctors we saw. I am encouraged about some things too. I will give a brief breakdown of the appointment.

We are now a part of 2 clinical studies that will not necessarily help Ben immediately, but will help future Duchenne children.

Clinical Study #1: United Dystrophinopathy Project
This study will require us to be seen once per year at Nationwide Children's Hospital for a blood draw, physical therapy/muscle testing, and a questionnaire. Doesn't seem too hard :o)

This study will pinpoint precise mutations (changes) in the dystrophin gene and aims to understand how these mutations determine the symptoms and severity of Duchenne and Becker dystrophies. (taken from the MDA website).

Clinical Study #2: Cardiac Myopathy Project

This one will require us to have an echocardiogram yearly (which he has to do anyway) and when he begins to have problems with his heart function, they will give him a drug that will improve function and possibly help the skeletal muscle.

This study will show the relationship between the mutation in the gene and the muscle strength and heart function-and how they change over time.

A double-blind randomized clinical trial of lisinopril versus losartan is proposed. Both drugs are known to be effective for the treatment of dilated cardiomyopathy. ACEi have both delayed the onset and progression of left ventricle dysfunction in children with DMD. (taken from the Nationwide Children's Hospital website).

Genetics

We saw a genetic counselor because this is a genetic disorder. Even though we aren't having anymore children, they want to see if I am a carrier of this disease. This disease is always passed from a woman to a son, it is an "X" linked gene. They are doing this for several reasons.

If I am a carrier, this means that I have a 20% chance of displaying muscle weakness and having a heart problem myself. Women who are carriers can have sons born with or without the disease, they can have daughters who are or are not carriers of it.
If I am a carrier, then my sister on my mom's side needs to be tested to see if she is also a carrier. My sister on my dad's side does not have to be tested, because we have different mothers.
My daughters all have to be tested, regardless if I am a carrier or not, because they have a sibling with it. They will be tested when they are ready to have children or are age 25, whichever comes first. If any of them are carriers, they too would have the potential of muscle weakness and/or heart issues. Carriers have their hearts checked beginning at age 25 and will continue every 5 years.
If my test is positive for being a carrier, my daughters have a 50% chance of being a carrier. If my test is negative, they have a less than 10% chance of being a carrier themselves.
Since I have 2 other sons who do NOT have Duchenne, my own chance of being a carrier is one third.

Whew! That was genetics 101.

Nutrition stuff

I asked a lot of questions of nutrition, supplements, better food choices, etc. Good nutrition is good for everyone, but, because Ben is on Deflazacort, he has the potential of gaining too much weight. This would obviously make his muscles work harder when they are losing strength. Here is a summary:

We need to limit sodium intake. Fluid retention should be avoided, especially with Deflazacort.
Deflazacort causes weakening of the bones, so I have been giving Ben calcium chews and Danactive (which is also a probiotic) daily. You CAN get too much calcium, so we do need to watch it.
Berries are excellent! Any type of antioxidant are just plain good.
Whole grains good.
I asked about my big Vitamin E question...and got an answer! I am allowed to give him up to 400 mg per day. We will start this today.
Creatine supplements are NOT beneficial. They used to recommend this but do not anymore.
Watch the type of fruit...fruit can have a lot of natural sugar (grapes, bananas). Moderation is key.

So a lot of this stuff we already knew and have been implementing. And it is just plain good healthy eating for THE WHOLE FAMILY!

Appointments

We will go to MDA clinic every 3-4 months.

We will see the cardiologist yearly, until be starts having problems.

We saw the respiratory therapist yesterday and his lung function is excellent! Yay Ben!

Miscellaneous

I also learned the the high level of the CK test does NOT indicated the severity of the disease-one of my questions. That was a relief. We will start some swimming lessons for physical therapy. I don't have to restrict him from playing with his siblings, which was a concern for me. My boys can play, well, like boys lol.

They also had a representative for MDA come and talk to us and explained to us the benefits of becoming a member of their organization. They help financially with equipment, when the need arises, and they help with clinic appointments. I will be getting their quarterly Quest magazine (which you can also read online). I am already a member of MyMDA on the internet--look for me, my name is lapfam8.

Well, that about sums it up. I am still sorting out some info just because there was SO MUCH. He was pretty tired when we got home, understandably so! Here are a few pics from the day.

Ben was tired here...not too happy to have his pic taken!

This was the respiratory therapist's room. He had to "blow out candles" on the computer screen, he liked this part :o)

MDA clinic TOMORROW!

2010-02-23T07:09:00.000-08:00

Tomorrow is Ben's first MDA clinic appointment! It was supposed to have been 2 weeks ago, but they canceled due to the weather. I have been looking forward to this appointment for a long time...since his diagnosis on December 29.

Some things that I am looking forward to are asking my numerous questions! I have learned so much in the last 3 months-more than I would have wanted to know really. But I have questions that are specific to Ben. Today is one of those days where I am optimistic, hopeful that the cure for Duchenne is just around the corner. Not every day is like this, I also have my days where I am just sad, frustrated and overwhelmed. I like days like today.

I am so thankful for the community of DMD folks; for sharing their stories, their information, etc. I have learned so much and still have a lot to go! If we continue to come together, our voice for the need for a cure will be stronger and louder. Are you doing your part? Are you making a difference for your son, nephew, cousin, brother? What about future sons, nephews, cousins, or brothers? Let's do our part in making Duchenne a common household name and therefore putting it out there and letting people know that there still IS NOT a cure.

Duchenne

2010-02-17T07:30:00.000-08:00

I have two main goals of this blog: #1 is pretty simple. I want to keep our family and friends updated about our son, who has Duchenne Muscular Dystrophy.

#2 is to raise awareness of Duchenne. When we were first told at the emergency room about the possibility of Ben having muscular dystrophy, they didn't mention the word "duchenne"; they just said muscular dystrophy. When we got home, around midnight, I googled muscular dystrophy and all kinds of sites came up, but they all talked about varying dystrophies, each with its own set of problems and prognoses. Then I got to one that explained the differences between the 40 different dystrophies, yes FORTY!! There are 9 main ones I guess you could say, but more than 40 all together. The article went on to say that Duchenne is the most common and the most severe. I prayed, Oh Lord, please, if he has to have this, please, don't let it be this one. Well, as you already know, it IS Duchenne.

Everyone needs to know about this horrible disease. It robs our boys of freely running, jumping, climbing trees, riding bikes, and their life. The more people know about it, the more awareness, the more likelihood that there will be a cure in the near future. I want a cure not only for my son, but for other sons as well. For some, it is too late, this disease progresses rapidly. But for others, there is still hope. I believe there is still hope for my son-he has some time on his side...but the effort needs to be NOW.

For those of you who know me in real life, might think I am going a little overboard....but wouldn't you do the same if it was your son?

The Lord is faithful. I will trust Him in whatever comes our way. I am praying that a cure will be found, in time for my son. But if that doesn't happen, i will still trust Him. He has allowed this to happen and I want to glorify him in all that I say and all that I do.

John 9:1-5 says:

1 And as Jesus passed by, he saw a man which was blind from his birth.
2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? 3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him. 4 I must work the works of him that sent me, while it is day: the night cometh, when no man can work. 5 As long as I am in the world, I am the light of the world.

Just some info on Duchenne

2010-02-12T07:13:00.000-08:00

DUCHENNE MUSCULAR DYSTROPHY

Age of onset:	2 to 6 years
Inheritance / gender affected:	X-linked / males
Muscles first affected:	Pelvis, upper arms, upper legs
Progression:	Slow, sometimes with rapid spurts

DUCHENNE muscular dystrophy (DMD) is the most common childhood form of muscular dystrophy. Early signs of Duchenne, which usually occur between the ages of 2 and 6,

Read More:
	Facts about... Duchenne & Becker

include frequent falling, difficulty getting up from a sitting or lying position, and a waddling gait. Another hallmark is the apparent enlargement of the calf and sometimes other muscles, which is really due to an accumulation of fat and connective tissue in the muscle. A blood sample shows a very high level of creatine kinase (CK), an enzyme that leaks out of damaged muscle.

In Duchenne muscular dystrophy, posture changes as the child grows.

Progression varies somewhat from child to child. The use of orthopedic devices and physical therapy can prolong the ability to walk. Frequently, however, a wheelchair will be needed by age 12.

Mild mental retardation has been noted in some (by no means all) boys with Duchenne dystrophy.

Breathing becomes affected during the later stages of Duchenne, leading to respiratory infections. These are often successfully treated with antibiotics and respiratory therapy. Severe respiratory and heart problems mark the disease's final stages, usually in the boy's teens or early 20s.

In 1986, MDA-funded researchers identified the gene that, when defective, is responsible for Duchenne muscular dystrophy. They discovered that the gene's failure to make a working version of the muscle protein dystrophin is the cause of the disease. Most boys with Duchenne have little or no dystrophin in their muscles.

Further research has shown that dystrophin is attached to other proteins at the edge of muscle fibers and that it probably helps anchor the fibers to connective tissue surrounding them.

*This was taken from the MDA website.

Ben's 6th birthday party!

2010-02-08T17:08:00.000-08:00

My "baby" is 6 now!

Living and Dying With Muscular Dystrophy - ABC News

2010-02-08T17:06:00.000-08:00

Living and Dying With Muscular Dystrophy - ABC News

I just came across this article from another Duchenne MD mom I met on Facebook. We need a cure!!

Snow, snow, and more snow :o(

2010-02-08T08:52:00.000-08:00

We received about 9 inches of snow this past Friday and Saturday, and another round coming tomorrow. I normally like snow but don't like driving in it! Our first clinic appointment is Wednesday and I REALLY don't want to miss it!! I am so thankful we live so close to the MDA clinic at Children's Hospital! I just discovered today that there are only 3 MDA clinics in Ohio...and we are practically down the street from one of them ;o).

I am still amazed at how many people are affected by Duchenne. I am still meeting people, mostly online, who have sons, brothers, and husbands with it. Yes, you read that right, some men are into their 20's, 30's and 40's with Duchenne!! It is not common, but it still gives me hope!

And he runs!

2010-02-05T05:44:00.000-08:00

Today is day 18 on Ben's medicine. Two people (a friend and a neighbor) have told me that they see a difference in Ben and his ability to RUN. I did not provoke these conversations--they came to me and said, wow, I have never seen him run like that! Music to my ears :o) I am so glad we decided to go this route. The only side effects that I have seen so far is in the late afternoon/early evening, he gets a little hyper. It is funny in a way because he is usually so laid back. I know we are still at the beginning of all this and that more side effects could come, but for now-it is good.

This past Monday, he turned 6! We are having a very special birthday party for him tomorrow, provided people can get here with the 5-8 inches of snow we are expecting today lol.

Next Wednesday, February 10, we have our very first clinic appointment. I am excited and a little nervous about it. I "met" someone last night on Misty VanderWeele's live tv. Turns out my new friend lives close by-within about an hour and a half or so. We chatted a lot about Duchenne and what I can expect at our first clinic appointment. One of the doctors that Ben will see will be a cardiologist, to do an echocardiogram on his heart. I guess I have this fear that they will see something that isn't good. By God's grace, I will deal with whatever comes.

Misty has a questionaire that I filled out a few weeks ago. One of the questions I continue to ponder. I don't remember the exact wording, but something to the effect of: "What is more important regarding your son's life? The quantity or quality." At face value, this can be a tricky question! I want both! However, I want what is best for my son, so after a few minutes of deep thought, I chose quality.

Something else I have discovered in recent weeks- Muscular Dystrophy is a very broad term for many neuro-muscular disorders. I, myself had never known of there being more than 40 different dysrophies, which each having it's own set of problems. Duchenne is the specific form of dystrophy that my son has. Duchenne is 100% fatal, it is genetic, and it is the most common! 1 in 3,500 boys have it! I was blown away when I heard that!

I guess part of my goal with this blog, aside from keeping family and friends updated about my son, is to raise awareness of DUCHENNE muscular dystrophy. People need to know. I didn't know until I was hit in the face with it. I have been meeting so many great people through this, mothers of sons with DMD, doctors, people with a passion for raising awareness, etc. I want to do my part too.

4 days

2010-01-21T05:20:00.000-08:00

Ben will be taking his 4th dose of his Deflazacort today. So far, so good. We did see what appeared to be a rash on his face on the evening of his 2nd dose. But it went away within about 15 minutes or so and I have seen nothing like it since. I haven't noticed any changes really. (yet) I have been pumping him full of calcium, to try and strengthen his bones while taking the Deflazacort.

I watched a movie called Darius Goes West. When we first heard about the possibility of Ben having MD, I got on the library website and reserved everything that had to do with muscular dystrophy. I find that the more I know, medically speaking, the better I feel about things. I like having a complete understanding so I know what to ask the doctors. But the books that came in that were more biographical in nature, and this movie, I had to put those on hold for a little while. I am okay (for the most part) with the medical knowledge, but am having a hard time reading/seeing someone else's life who is dealing with this same thing. It just hits too close to home. I returned the movie (unwatched) and then kept hearing about it on all the MD websites that I have been getting on. I re-reserved it and actually watched it Monday.

This movie is a documentary about a young man, Darius Weems. He is 15 years old at the time of the filming. From the website:

Accompanied by his eleven best friends, Darius Weems, a fifteen-year-old living with Duchenne Muscular Dystrophy (DMD), leaves home for the first time in his life. The rowdy crew sets a course for California where they hope to convince MTV to customize Darius's wheelchair on the hit show, Pimp My Ride. Darius Goes West been enjoyed by hundreds of thousands of people of all ages all around the world.

Just a note-I do not watch MTV and didn't even know about this particular show. According to the movie, they surveyed people and asked them if they knew who Jerry Lewis was. Most people said NO. People my generation and younger don't know who he is, yet he is the "face" of Muscular Dystrophy, having done the telethon for many years. The goal of going to this MTV show was to tell a new generation about DMD. Before Ben was diagnosed, we knew nothing ourselves, so I do believe that people need to know about this disease. It affects 1 in 3,500 boys and is 100% fatal.

There was another family chronicaled throughout the film. A 5 year old boy (like Ben). I was shocked once again to see another little boy who walks, runs, kicks a ball, etc...just like Ben. Just another reminder that yes, he really does have DMD, it isn't just him being the Baby of the family, it isn't just him walking silly to make us laugh.

Again, taking this one day at a time, and enjoying our time as much as possible.

Deflazacort

2010-01-18T07:45:00.000-08:00

This is the new medicine that Ben's doctor wants him to start. It is similar to Prednisone (steroid) in the fact that they both help with muscle strength. BUT, you cannot buy Deflazacort in the United States because it is not FDA approved. These steroids are used to prolong mobility in children with Duchenne's Muscular Dystrophy.

Some of the benefits of Deflazacort (from the Parent Project MD website) are as follows:

prolonged ambulation (mobility)
improved pulmonary function (Ben does not have a problem with his lungs at this point)
improved upper extremity function
delayed need for spine surgery (scoliosis seems to be a problem with MD kids)
preserved cardiac function (Ben has his echocardiogram in February to see how his heart is doing.)

The side effects, however, are not great.

weight gain
growth in height slowed
cararacts
osteoporosis (I started Ben on calcium supplements to help with this)
gastrointestinal
headaches & mood swings
possible increase of blood pressure
and a few others

I had a really hard time Friday when the medicine came in. It was almost like getting the diagnosis all over again. Now I have the medicine-it means it really is the real deal. I started wavering on even giving it to him because of the side effects, but after reading again about the benefits, I changed my mind. I bought some tic-tacs over the weekend to have him practice taking a pill whole. He actually gets a half a pill of the Deflazacort.

Today was his first dose! I took a tic tac and placed it in a small spoon of ice cream and had him swallow it. I wanted to make sure he couldn't taste the tic tac. He did that fine and so we did the real pill. From what I have read, it has a really bad taste. I don't want him to accidentally taste it and then not want to take it at all. So far, so good. I am eager to see if he truly improves in his muscle strength.

PPMD-Watch this!

2010-01-15T06:33:00.000-08:00

A video to watch

2010-01-11T08:26:00.000-08:00

Exciting possibilities

2010-01-03T17:34:00.000-08:00

My Mom and I have been finding more information to back up what we first found on nutritional therapy. When I first found that website, saying that various supplements can help different aspects of MD, I was hopeful but leery that it was just one source with this information. I have now read the same thing in a book called "Nutrition Almanac" and my Mom found this website that back it up. I am very encouraged by this. At the very least, I think that his overall health can be improved, and the possibility of slowing down his MD symptoms is a good chance. I will be calling his pediatrician tomorrow to set up an appointment and ask about these different vitamins and supplements.

Vitamins

2009-12-31T13:52:00.000-08:00

I am overwhelmed with all the information out there for DMD! There are some very encouraging things going on in the DMD community. I have signed up at the MDA website and everyone is very welcoming and understanding.

There are some specific prayer requests that we have right now.

#1 I have read about several vitamins and supplements that could be beneficial to Ben. These include CoQ10, Vitamin E, Selenium, as well as a few others. There have not been high dollar medical studies to prove these though. I want to be able to give him the very best possible chance at living a full life. Please pray for our wisdom in decided which vitamins/supplements work best for his situation.

#2 That we are able to obtain his new medicine without problems. Many doctors prescribe Prednisone (long term) for MD and there are MANY side effects. There is another steroid that works just as well, Deflazacort, without many of the side effects, but it is not FDA approved and therefore has to be purchased in Canada, Mexico, or the UK. We will be getting ours in the UK. Pray that our first order goes through ok and that we get it in time (his doctor wants him to have been on it for at least 2 weeks before our first MDA clinic appointment (February 10).

All in all, we are doing okay. We have pretty much have had a month preparing for the official news. I want to be positive and stay as upbeat as possible. I think this will benefit us and all of our children. God's grace is sufficient! Hebrews 4:16 tells us "Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." This is what I am doing, going to the throne and finding the grace in this time of need.

Positive

2009-12-29T13:19:00.000-08:00

Ben's test came back today and yes, it is positive. He was officially diagnosed with Duchenne Muscular Dystrophy.

We debated back and forth about whether or not to take all the kids to the appointment. We decided at the last minute to just all go together. We are a family, we'll just deal with it as a family. When we walked into the clinic, there was noone else there; it almost looked like they were only open for us lol. I went to the receptionist desk and told her who we were and who we were supposed to see. The doctor was standing right there and said, "Are these all your children? Did you mean to bring them?" Um, no it was an accident. She said well, we are discussing the results of the test and you can bring them in if you want or they can stay in the waiting area. Right then, I *knew*-she pretty much let it out that the results were bad by the way she said that.

Since we had already prepared ourselves (as much as we could), we weren't too surprised when she said that yes, he did in fact have Duchenne MD. Still with all the information she gave us, it was a little overwhelming.

Praise the Lord that I know Him. Otherwise, I would be a mess right about now. The Lord has given me a calmness and peace about this and I know that He is holding me close. We are beginning a new chapter in this journey-a chapter that will include MDA clinics, cardiologists, respitory therapists, physical therapists,etc... However, with all these new doctors and appointments, we are going to try to live life as normally as possible. We are still going to do school, church, field trips, but will make more of an effort to stop and smell the roses. We want to enjoy life as much as possible and live it up to the fullest.

I will post more about the things discussed at our appointment today in another post soon. Thank you to all who are praying for our family.

Can Nutritional Therapy Help MD? (and other stuff)

2009-12-27T12:38:00.000-08:00

I found this article while browsing and thought it looked interesting. I am still VERY new to MD and there is a ton of information out there. This article on nutritional therapy is something that I am going to ask about at our next visit to the doctor.

Speaking of our next visit, we are going this Tuesday. We received a call on the 23rd that the results of our 2nd blood test are in. They did not tell me over the phone, and from what I understand, they are not allowed (but I asked anyway). They want us to come in and sit down with us to discuss the results. Unfortunately, our neurologist is out of town until January. We are seeing a different doctor at the Neuro-Muscular Disorder clinic at Children's. In the back of my mind, I am still hoping that it is something else....something less severe. The wheelchair part is something that I can handle--the life-expectancy being in the 20's part is not. As I have said before, only the Lord is the One who will see me through this.

The last 2 weeks or so have been a little strange. After the initial shock of it all, after weeping and crying out to the Lord, I have a strange sense of peace. I don't know if the busy-ness of this time of year has taken my mind off of it some or what. I am truly thinking that Lord is just plain giving me comfort, showing me that He is in control and that He will hold us up and that things will all be done according to His timing. That really is comforting. I can feel the prayers and it is so amazing to me.

Neuromuscular Disorders :: Nationwide Children's Hospital

2009-12-27T12:37:00.001-08:00

Neuromuscular Disorders :: Nationwide Children's Hospital

Posted using ShareThis

Ben

2009-12-27T12:21:00.000-08:00

Just had to post this because he is just too cute ;o)

17,771

2009-12-27T12:20:00.000-08:00

We received the results of one of Ben's blood tests a few days ago. Basically it was checking for something called "Creatine Kinase", a CK test. When the muscles break down, CK releases into the bloodstream, so when it is elevated, they know that there is some kind of problem with the muscles. The nurse was not sure what the "normal" range was, but from my findings, it seems to be somewhere in the range of 22 to 198 (some even say up to 400U/L). Ben's is 17,771.

The nurse said that since it is elevated, it indicated that yes, he has a muscle disorder, but the doctor is not saying what yet until that 2nd test comes back (around the 22nd). The 2nd blood test is looking for the specific gene and mutation, which will tell us exactly what he has.

I am surprisingly okay right now. I know that it is in the Lord's hands-as it was before we even knew anything. I also know that many prayers are going up for him and my family. It's funny, people ask me, "how is Ben doing?" Well, he is doing exactly the same as he was before November 28th. He doesn't feel any different and he doesn't really understand what is going on. He just knows he has been to the doctor's a few more times than normal.

He did have a problem the other day, saying the arch of his foot hurt-and he crawled around for a while. Again, this isn't totally abnormal for Ben. He did it a few times in the summer, his leg or foot would hurt and he would crawl or I would carry him (he is still rather small for a 5 year old). I asked the doctor about it at his last check up and at the time, there did not seem to be any concern. Now I am questioning everything!

Thank you again for the prayers, they are truly being felt! I will update again when our next test comes back.

Neurology

2009-12-27T12:19:00.000-08:00

We had our appointment with the neurologist here at Children's Hospital. Have I mentioned how grateful I am that we live so close to Children's?! Anyway, this doctor specialises in MD and has participated in several clinical studies for it. He did a physical exam of Ben and said that his thigh muscles are weak (which we knew) and that he suspected the same as the ER docs, MD.

He did 2 blood tests, the first to check his muscle enzymes (if these are elevated, it is a positive diagnoses), and he order the 2nd test "just in case the first is positive"-this way they won't have to stick him again. The 2nd test checks for a lack of a protein called Dystrophin which will indicate which type of dystrophy he has (again, if the first test is positive). We will find out the results of the first test today (anxiously waiting!) and the other test in early January. He has also sent our information to the MDA clinic at Children's, they should be calling to set up an appointment for us. All that said, right now we are just waiting to hear the results. Thank you to everyone who is praying for us!

We had our appointment with the allergist too. Nothing came up on the testing so they want to draw blood to make sure (I wish we would have known that on Tuesday, when they did the first blood draw!!). He seems to think that it is some kind of nut that he may be allergic to. Who knows??

Originally posted December 10, 2009.

Life

2009-12-27T12:16:00.000-08:00

Life has certainly been keeping me busy!

My kids went to a birthday party this past Saturday and I noticed after being there for about an hour or so that my youngest son started swelling in his face and lips. This happened once before, this past summer (ironically after a birthday party?!). We were told then to just give him Benadryl and watch him closely (they didn't need to see him since he wasn't having any trouble breathing). They did tell us that if it happens again, then we should take him in because a 2nd allergic reaction could be far worse.

So we went home, gave him some Benadryl (which I now carry with me lol) After about 2 hours he didn't look much different so off to Children's Hospital we went.

The Doctor there wanted to look at his stomach and legs to see if he had a rash. It was when she looked at his legs that I realized something else was wrong. She said, "wow, it looks like he has a charlie horse!" Then she noticed his other one looked the same and started asking me questions. I let her know that he has always had some trouble with walking, running, jumping...but we had it checked out when he was almost 2 and the doctor at that time didn't seem concerned....just said that his 5 older siblings needed to stop carrying him around all the time. He didn't crawl until about a year old, walked at 21 months, ran (his way of running) about 3 or 4 and learned how to jump with both feet off the ground this past spring. He is 5 1/2 years old.

The resident doctor rounded up some other doctors and did a few tests on him, such as getting up from a sitting position-he can do it, but he "walks up himself with his hands" instead of just getting up. So basically, with his large calf muscles, difficulty in climbing stairs, "climbing up himself", they have strongly encourages us to see a neurologist. They think our son has Muscular Dystrophy.

Whew! We were shocked. We now have an appointment with the neurologist, and an allergist (the reason we went to the ER anyway). I have done some research on my own and what I am seeing does not look good. But I also know that he has NOT been diagnosed yet. From what I am reading, there are at least 9 different dystrophies: and they range WIDELY in severity. Sadly, the most common one, Duchenne's, is also the most severe.

Only by God's grace am I going to be able to deal with this. I called a family meeting with the children and explained that we will likely be experiencing a new kind of normal. We will still being doing school, many church activities of a pastor's family, and living life as normally as possible, with the addition of new doctor's appointments etc...

We are at the point (most of the time!) that we will just accept whatever the Lord has for him and for us. Not always easy. But His grace is sufficient for me.

Originally posted at www.familiesareablessing.blogspot.com on November 30, 2009.

Welcome :o)

2009-12-27T12:09:00.001-08:00

I have started this new blog to keep friends and family updated on my youngest son, Benjamin. As of today, December 27, 2009, we are in the process of the official diagnosis of Muscular Dystrophy. This will also be a place for other parents of MD children to come and find resources, be encouraged, and connect with one another on this journey.

I will be reposting a few entries from my other blog to this one in order to keep everything in one place :o).