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.
Wednesday, November 10, 2010
Sunday, November 7, 2010
Friday, November 5, 2010
Reflecting and Other Stuff
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.
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.
Monday, November 1, 2010
November already?!
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.
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.
Wednesday, October 6, 2010
Clinic October 2010
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.
Monday, October 4, 2010
Update
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.
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.
Saturday, September 4, 2010
MDA Telethon
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.
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
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!
It's time for the Labor Day MDA Telethon! Be sure to watch and donate if you can!
Wednesday, August 4, 2010
MDA Telethon-Be a Star!
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!
If you are interested in donating to the MDA for the Labor Day Telethon, just click the link!
Friday, July 16, 2010
My Comfy Spot
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.
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.
Monday, July 12, 2010
Got my book!
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)
Friday, June 25, 2010
Disability Placard
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.
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.
Thursday, June 24, 2010
Wednesday, June 23, 2010
AWESOME Time at Clinic!
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)
Sunday, June 20, 2010
Clinic Time!
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
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)
Sunday, May 23, 2010
MDA Stride & Ride PICS
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.
Thursday, May 20, 2010
MDA Stride & Ride
Getting ready to leave for guitar classThis 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)
Friday, April 2, 2010
Busyness
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.
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.
Wednesday, March 24, 2010
The Jett Foundation
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.
www.jettfoundation.org
Also, a video they put out that really puts real-life perspective on this horrid disease.
Saturday, March 20, 2010
Peddling ;o)
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!
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!
Wednesday, March 3, 2010
Tuesday, March 2, 2010
Recent News Articles
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.
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.
Monday, March 1, 2010
Wednesday, February 24, 2010
Home!
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.
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).
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)
- 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
- 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.
- Nutrition stuff
- 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.
- 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
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)
Tuesday, February 23, 2010
MDA clinic TOMORROW!
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.
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.
Wednesday, February 17, 2010
Duchenne
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.
#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.
Friday, February 12, 2010
Just some info on Duchenne
DUCHENNE MUSCULAR DYSTROPHY
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.
| 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... |
 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.
Monday, February 8, 2010
Living and Dying With Muscular Dystrophy - ABC News
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!!
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(
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!
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!
Friday, February 5, 2010
And he runs!
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.
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.
Thursday, January 21, 2010
4 days
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.
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.
Monday, January 18, 2010
Deflazacort
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:
The side effects, however, are not great.
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.
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
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.
Friday, January 15, 2010
Monday, January 11, 2010
Sunday, January 3, 2010
Exciting possibilities
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.
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